When I became a nurse, I told my mother that when she got old or had dementia that I would not be her caregiver but that I would supervise her care. The first thing I told her to do was to get long term health insurance. Then when she was in her seventies, we found a a retirement community that she liked that had independent living, assisted living and a nursing home. When she was in her eighties, she was doing with Parkinson’s and several years later she started showing signs of Parkinson’s dementia. She transitioned to assisted living then to the nursing home. She died five years later. Even with all of this planning, each transition was difficult. There were several years when I had a designated tote bag that had Sal her paperwork that I carried often. The work was exhausting physically, mentally and emotionally. But I am proud of how I cared for her.
@@rebeccarobb4121 , personally and also from participating in a worldwide Alzheimer caregiver support group, long-term health care insurance is often not the greatest deal. When you add up how much you spend monthly, and the guidelines for how many days you have to be hospitalized to rehab to nursing home care - we ended up paying out of pocket $5,000 per month on nursing home care because Dad was booted out of rehab. We asked for hospice, and they dragged their feet. So when I filled out the long-term care paperwork, I found out that he wasn't even eligible for the length of stay. It was only going to pay $100 per week which is really nothing. So be careful. Ask questions and have them be very clear on the amount and frequency of payouts.
@@rebeccarobb4121 I like how you define "care": not the caregiver but the supervisor of that care. I think it is the only way to protect one's own physical, emotional and spiritual health.
I believe you made the right (and kind) decision at not taping your Mom. At this point, helping others is a bonus (which we're getting from your sharing of your experience), but maintaining dignity and allowing that if our loved one's decision-making abilities have been compromised, they could also be compromised in knowing full ramifications once an image is sent into the web. Thank you for loving (and protecting) her.
My Dad was diagnosed with mixed dementia in 2013 and he denied it and fought against it. The battle of the car keys was a major one in which I, as an only child, had to be the ‘bad guy’. My mom had vascular dementia and Dad was convinced he was her carer and needed the car. I lived 3 minutes drive away and could do any shopping or appointments they needed but it was a pride issue for my dad… I won’t go into it all but it brought me to the brink, I refused medication but accepted counselling. I can’t tell you how relieved I was that they moved to assisted living, changed my life from having to be there daily seeing my frail mum being left to my dad’s care and trying to literally save her from his best intentions. They had on site care visits four times daily. Thank god for the UK NHS at least we didn’t have to even think about the cost of doctors and hospital stays (9 for mom in her last year) or the almost weekly ambulance calls for falls to one or other of them. My parents died in 2016 and 2019 respectively. I’m relieved they were spared the Covid years as they would not have understood that I couldn’t visit and would have been very distressed. At least they were spared that. Thank you Jen for sharing your story. It can be very isolating to be in your situation and I think a lot of people will gain comfort in knowing that many other families are facing the same issues with a loved one(s).
I think men, in particular, equate their cars with their freedom. We were unsuccessful in getting Dad to give up his keys even though he lived in a community that provided transportation. One day he lost control on the highway and totaled his car. Miraculously and thanks to airbags, he was shaken but unharmed. His plan was to call the dealership and have a new car delivered and never tell me or my siblings about the crash. Had the police not revoked his driver's license, pending him passing a new driving test, he would have done just that. IMO, he knew he was no longer a safe driver and chose not to reinstate his license rather than being told that he couldn't. I agree that driving is a pride issue, particularly for men.
I’m out doing errands and literally stopped what I was doing to watch this - that’s how important this info is to me. Thank you for caring enough to share your experience.
This really struck home. Mom lost all ability to use the computer, even opening the laptop became too hard...she said it was broken. Last month, she suddenly forgot how to dial a phone. Then the speed dial wouldn't work. The TV has been a problem...if only she had the old one back, she will say. Now, Mom is in her 98th year. So, we care for her, keep her safe. At her age, we won't go to the extent we would if she were younger. She cares for her basic needs, showering, dressing, simple foods that simply require picking up something prepared. Staying ahead of her needs as they crop up, sometimes challenging. I handle finances, etc. Dad died only 3 years ago, and we are all surprised at the rapid decline, but, again at her age...we keep her comfortable. She's blessed with a long life.
Thank you for sharing your story. I’ve been caring for my 86 year old mom with Alzheimer’s for 6+ years, much worse this year and am her full time caregiver. It’s such a heartbreaking disease and is physically, mentally and emotionally exhausting for caregivers with very little support
For what’s it worth, my mom did have cognitive testing which was very grueling. The test occurred somewhat early on when she noticed deficiencies. However, she fell within the “normal” range for her age which is obviously a bigger area than one would think (and you had mentioned). At the time, we were lulled into a sense this was normal aging. Now, only 1 year and 4 months later it’s obvious to everyone, doctor’s included this wasn’t the “normal” aging. The testing for us proved unhelpful. But, I could see having it done at your age to get a baseline could be a wholly different story. I do hope our experience with our mom proves helpful in some small way; I, too, do wish they/we could have known back then and as her caretakers we could have tried to preserve or slowed down the progression, IF that was even possible for her. Jen, Thanks for sharing your story.
I have been nodding along, and commiserating with your videos. In my case, I let my mom be the “mom” too long. I tried to get her to cooperate. It didn’t work out well! She had an ‘incident’. Luckily she lived through it and did not hurt anyone else. I worked with the police to have them officially revoke her license because I just couldn’t convince her that she couldn’t drive. Long story short, it took 3 of us to get her into memory care and we had to lie to her to do it. Two months later she believed that she had made the decision to move into memory care by herself. We went right along with that ;) The journey was traumatic but oh so necessary. She is well cared for. Thank you for putting this information out there into the universe!
We went through this with my dad who has now been gone 3 years. I am now concerned because my mother, who has never been physically healthy, appears to be "slipping." Because of her poor health, I've had a hard to determining what I am experiencing with her. Several things you mentioned hit home. She is 83 and it is so easy to "overlook" things or just say it's her age, but my gut tells me differently. Thank you for sharing your experience.
Thank you for this video. My husband had a hemorrhagic stroke 8 years ago. It’s been such a long journey. He is so lucky to be alive. He can care for himself, but has speech aphasia and cognitive issues. I have noticed things changing, anger, stubbornness and refusal to accept responsibility for his actions. He will be having a cognitive test next week and the neurologist suspects vascular dementia. I’m afraid of the diagnosis, but at least we will know something. Good to know I am not alone ❤
I can’t tell you how much this video has already helped me. My husband was diagnosed with alzheimers and vascular dementia a few years ago. We’ve been managing with him at home, but his physical health has been declining to the point that he’s now in hospital after a fall, and will be transitioning into a nursing home. For about a week after he was admitted to hospital he didn’t recognise me, and that gutted me because I didn’t think he’d come back from that. But apparently there was a massive infection which was also contributing to his level of confusion, and once they got rid of that he knew me again. Naturally this was a huge relief emotionally, but it also brought problems because I then had to explain to him that he was going to be in a nursing home. We’re currently at a bit of an impasse, with him adamant that I’m fully capable of caring for him, and me equally adamant that I’m not. I’m looking forward to your follow-up videos where you speak about that transition.
This series has been extremely helpful to me. I'm walking this journey alone with my Mother. Your blessed to have siblings to help. Thanks for sharing your journey.
Bless you for making this video that will be so helpful to others. For years I kind of bought the story from my parents that everything was fine with my mom until I finally acknowledged that I knew what I was seeing and immediately turned around the way I treated her frustrating behavior, instantly regretting the wasted years. In retrospect I figure my mom suffered from Alzheimer’s twenty years, outliving my dad by nine years. Like you, I was fortunate to have very supportive siblings, but as I lived in the same town as my mom I was the one responsible day to day. I always share with persons going through this two pieces of wisdom, the first a practical bit shared by a friend: You will never win a “battle” with a dementia sufferer. It pays to enter their world. The second was a choice I made especially when Mom was totally in my care: Embrace and appreciate with the loved one you’re caring for just as they are right then each minute of the day (and that can change by the moment), never worrying about what they used to be. (I would always think of her as my “new” mom.) By remembering those two things above all the rest, minor frustrations faded away and I was able to spend my nine years with her living in joy, not grief. The grieving did come months later after she died, but it was wrapped in joy.
Bless you. My mom had dementia for thirteen years. She was in assisted living for three years and an Alzheimer's unit for the last five. I am now sixty-nine, and it is my greatest fear.
Oh, Jen, I can't tell you how many times I shook my head in agreement during this video. My sisters and I are on this journey with you. It is one of the hardest things we have ever done. I will pray for you and your family. Hang in there.
My mother-in-law had Alzheimer's and no one suspected for a few years. My heart goes out to you and your family for what you are going through and what you will go through. Do the best you can. It's a horrible disease. I wouldn't wish it on anyone.
LOVE your mom's "Princess Barbara" comment -- it's comforting to know that such a keen observation of self-awareness (i.e., how princesses get taken care of vs. queens taking care of everyone else) is still possible in rare lucid moments.
Thank you so much for your vulnerability in sharing your story with your mom. I can't tell you how helpful it is to me. My sister-in-law has Parkinsons and likely Dementia, but she's fighting getting tested tooth and nail. In the meantime, she's still in control of her finances, her personal care, her driving, and so on, and I'm unable to help until she's declared "incompetent." I fear that if I were to step into that role now, she'd simply remove me from her Trust as her power of attorney, and then she'd have no one. Such a complicated mess of a situation, but your videos do bring me hope and encouragement that we will get through all this. Hoping that your mom is stable and you all have come to a peace of sorts about her care and wellbeing. Thanks again. So very helpful.
Thank you for this content. My father has early onset Alzheimer’s, and it’s brutal to watch a once intelligent and proud man slip away. I wish I had the support system you do. Please continue these videos because they make me feel less alone. ❤
Thank you Jen; another profoundly meaningful video. I agree with your decision not to show footage of your mother. As others have pointed out, she is no longer 100% capable of making this decision for herself. I am walking this same journey with my husband, who was diagnosed with early mixed dementia (vascular/Alzheimers) in late 2023. I feel that even telling people without his consent, or any activity where I feel his consent is no longer informed (even being intimate) seems a bit of a violation or exploitation, as I can’t gauge exactly where he is at cognitively. The diagnosis could have been made so much earlier, but he always found an excuse not to proceed with the recommended testing, esp. during Covid as he is also immune compromised related to transplant immune suppressant medications. I learned recently that the initial symptoms of dementia can present nearly 20 years before it becomes undeniably apparent. Looking back, I can see brief instances or events going back at least 10 years that I dismissed as “one-offs”. I don’t know that things would have changed significantly for us with an earlier diagnosis, although we might have moved into a more simplified living situation. He is now dug in and does not want to move, and I am reluctant to upset his applecart, so we soldier on and try to focus on the many positives.
(Jane) I cried after watching your last video but came away with a better plan and attitude about mine and my parents' journey. Thank you for this video as well-information is power.
Thank you so much for this video. I am in tears as it touches close to home. Not only do I have my elderly mom, my only sibling has suffered from memory issues since a traumatic brain injury in their 20s. It is a tough road. So glad you are bringing light to the process.
I lived in the area you are for 12 years and my father stayed at that assisted living facility for nine years. We found that facility to be very accommodating as his dementia progressed. We have fond memories of his time there. Best wishes to your mom.
I'm so invested in this series, Jen!! My brother and I, along with our spouses (and sadly, our children) are navigating this exact thing with my mother. Our road block is my father. He's not allowing us to to move forward and he won't do what's necessary to get her properly assessed or in a care home. All the things you spoke about!!! The tech issues (she taught programming, now on her fourth phone because of "scammers") the conversations being one sided (always reverting to her family - siblings, parents, the past) and then the driving and getting lost. Luckily, Dad took the keys away. She's an angry person, hyper fixated on the weirdest things (bed bugs are killing all the "females", among other things) and she's frustrating. Our issue too was that she's always been abusive and I'm sort of glad the veil has been lifted and others see it and finally believe me. It's oddly validating?? 🤨 Oh!! How I wish we were closer and could sit down and chat. It's a difficult time. But!!! It's brought my brother and I closer. It's firmed our convictions that we need to take better care of ourselves and purge all the stuff we don't need - Swedish Death Cleaning has helped. Thank you for this!! I hate to know you're going through similar, but it's good to know we're not alone.
Your discussion was like a light switch going on. So many parallels to what we are going through with my 87 yr old sister. Thank you. I really appreciate your telling your story and look forward to the next. And I can say I 100% understand how difficult it is. We are 2 years in of the first glimmer that something was not right, 8 months of being certain and 6 months of having to take control of her living arrangements and care-giving. It’s a lot! A whole lot.
Hugs to you Jen. Coming from a student earning their Psy.D., you explained the things about cognitive assessment so well. Thank you for letting us walk this journey with you.
Jen, I am a new subscriber! I am so impressed with your communication skills! You kept my attention so well. My mother did not have dementia, but she was in a nursing home for 5 long years. I know the stress and frustrations associated with caring for your elderly parent who can no longer care for themselves. It is a real tear jerker at times. I was 60 when my mother passed 13 years ago. I also had a brother and a sister who assisted me with our Mom’s care. I look forward to hearing more of your journey with your mother. Thank you❣️
Hi Jen. Commenting before I watch the entire video to show support and say thank you for sharing your story. Despite the millions of people who need long term care, as a society we are very uncomfortable talking about it. I have been a caregiver for my grandfather with dementia and my severally mentally disabled sister (my sister was going through puberty while my grandfather was going through dementia). So many of us have been there where you are standing. You’re not alone.
Mom is in memory care now. No formal cognitive assessment was ever done. Dad just took care of her. He died in March. She may have what your mom has...both Alzheimers and vascular. We have seen the changes happening over the last 10 years. She is 93 and in poor health. Thank you for addressing this, there are people that need this information.
My father had dementia, he passed in 1997. It was a very difficult time, there is no right way to go, you have to figure it out along the way. Blessings to you and your family.
Jen, this is such an important topic to discuss. Our nation is seeing the start of epidemic levels of dementia in our older population. Sharing your journey is going to give support to so many others. Thank you.
Thank you for being so brave and sharing your story. My mom has dementia and it was about 7 years before we figured it out. She was smart enough to out smart the tests. Some days will be better than others when I get a glimpse of my old mom when she laughs. It’s a hard road to travel that is difficult to understand unless you have been on it. ❤
My mom was diagnosed almost 2 years ago - She was outsmarting her cognitive tests as well. She has declined quite a bit in the last 6 months - seems declines take place almost overnight. At some point her assisted living will do their assessment and I'll be curious to see how she tests next time.
I absolutely agree with your decision to not film your mum. I remember her from your many Christmas videos especially with the advent calendars. Your all doing a great job in a situation that is totally out of your control and comfort zone. My dad is 84 and we have very one sided “ selfish“ conversations he also is profoundly deaf…awaiting medical treatment. This doesn’t help with conversations! Take care Jen especially of yourself,as you need to be well to help with your mum….. Thanks for sharing this very sensitive topic….👍🇬🇧
This is the clearest and most honest account of the dementia journey that I have ever found, anywhere. The details you describe about the difficulties surrounding the stages preceding official diagnosis, cognitive testing, technology use, car driving, finances, the self-centered conversations - all of it - rings so true. I'm the sole carer for my husband and even the next stage - home care, not to mention a move to assisted living - will be very difficult. I live in a European country and therefore the assistance available is low cost and some of it is subsidised or free which helps. Thank you so much for your frankness and humanity.
Honestly that means more to me than I can say. I hoped to make a video that I couldn't find when we were going through it. Hang in there - none of these decisions are easy and it's a heartbreaking season of life.
I feel like your mom’s journey and my mom’s journey and progression of symptoms are almost mirror images. I totally identify with everything you said, I unfortunately don’t have any sibling support. My mom is now in a nursing home and though she still seems happy to see me, she can’t really carry a conversation (aphasia). She was always such a formidable personality, it makes me sad what dementia has done to her.
We had a really good conversation the other day (surprisingly good) and every time that happens I wonder if it's the last time . . .and there's no way to know it could be next week or 3 years from now. I'm so sorry, Kim. Hang in there and I will, too. The grief is not only impossible it's very unfair.
I remember, as a child, my mother going through this with her mom and just how hard it was. As an only child I always worry I may face this with her one day and it be a 1-on-1 fight. I am looking forward to your video on the signs you saw and how you dealt with it.
I have been watching your channels for many years, I first found you when I was doing DVC research. I’ve enjoyed your travel videos, Disney , and home vlogs. But I have to say your last couple of videos have really touched me. It’s as if you’re speaking directly to me as I am now finding myself in a very similar situation. Thank you, thank you for sharing your experience because you are truly helping others. God Bless to you and your entire family.
Jen, my heart goes out to you and your family for the journey you're on. Hearing these stories makes me eternally grateful to my mother for being self-aware and humble enough to decide she didn't want to live out on the farm alone any more. One day she just called and said she'd put down a deposit at an assisted living facility and could move in any time. A few years after that she decided driving was making her nervous and she asked my brother to help her sell her car. I hope I can have such grace for my kids' sakes when it's my turn.
Thank you for sharing your experiences. My sister and I have been navigating the same with our mother. So much of this echoes my own experiences -- her sudden struggles with technology, her troubles with finances, and my struggles with asking versus directly guiding her to the care she needs.
I thank you for being so open in telling your story which you do in a cohesive and logical manner. My parents did not have dementia, I saw several family and friends deal with their parents who had dementia, but my parents did need to move to assisted living in their final years. While we knew it would be best for our parents, it was still, for all concerned, an emotionally difficult step to take. It required a paradigm shift, and I leaned on a comment from my sister's friend who said it was getting comfortable with loving our parents differently. I hope you are comfortable with your decisions, while they can be difficult to get to, they are for the best. But moreover, I hope you find comfort knowing that your mom is in a living situation where there is community, supervision, emotional support, physical assistance, and care.
I am a year younger than you and unfortunately I have already lost both of my parents to this awful disease. I’m so sorry for what you and your family are going through.
Thanks Jen for sharing this series and your experience with your mother. I'm going through something similar with my mother and it's been so much to try and learn and figure out the system. My mother is also quite bright which does make testing a challenge. She originally told me she had alzheimer's but it turned out it's currently MCI with amnestic presentation. My mother actually wants to go to assisted living, but, physically she's in very good shape and not needing physical assistance. And while her memory has some definite disturbances in that space and time continuum, she seems for now, and according to the doctors to be somewhat stable. As you mentioned the assisted care is sooo expensive. When she sells her house, I'm hopeful the proceeds will pay for at least the two years out of pocket for the assisted care, but my fear is that if things stay stable at this level, she'll spend all her funds before she officially qualifies, and then get kicked out. Somehow we're supposed to plan for the future without knowing what it's going to be and it's so hard to find honest, affordable guidance. Medicare/Medicaid are shrouded in mystery! So helpful to hear your story. Look forward to the following episodes. Thx and best to your and your family!
I’m so glad that I found your video! I am now going through the early stages of vascular dementia with my Mom. She’s 92 and lives in her home alone. I live 45 minutes away and go to see and do for her once a week. Unfortunately it’s only me. I have no siblings and all of Mom’s siblings have passed away. She is now thinking some of her sisters are still around. I have resorted to saying that they no longer live close and they have no phones. She sometimes questions why she can’t remember things and it’s getting worse each day. I haven’t said anything, but do you tell them they have dementia? Three of her sisters also had dementia. It is getting mentally trying on me to the point of my patience wearing thin. I’m having the worse time convincing her she needs to be in assisted living closer to me. I’ll be honest, I don’t know which way to turn! Any directions would be greatly appreciated! .
Hi Jen - so sorry to hear about your mother. My grandmother had alzheimer's and I do worry about this with my own mother, who is in her 70's at this point so, it is very helpful. It must be incredibly challenging so, thank you for sharing your story.
All of these things sound so familiar, I feel for you all. It is so difficult when they’re used to being so independent to then have to convince them that they might need some help. Also when you don’t see them every day it takes a longer time than it should to connect the dots with the different signs. I’m glad she’s now getting the help she needs and will be much safer. ❤
Thank you so much for this content. I am an only child going through this by myself right now and the parallels with your mom and my mom are so familiar This has been so helpful.
Bless you for sharing your journey. We went down that road 16 years ago and there are many things to be learned along the way. I grew up in Crabapple & live about 15 miles to your west. Practically neighbors.
I’m so sorry that you and your family are going through this right now. My mom died from Creutzfeldt-Jakob disease in 2015. She started having memory problems in February 2015, and she passed in April 2015. Watching a loved one slip away is so hard. I’m sending many prayers and hugs to you and your family. ❤
This was very helpful. My father in law at 91 has been in the hospital for treatments the last month. We are seeing signs with my mother in law of something with her brain certainly going on at 86 after his crisis is over all focus will be on her. When people age you expect some things to happen but you said things so clearly on what to look out for that was so helpful. Thank you Jen my heart goes out for you on your journey with your mom.
Thanks for making this series. About a year and a half ago, my grandmother - another Barbara! - passed away after living with vascular dementia for quite some time. My mum and I were living with her when she got diagnosed, and I watched my mom go through pretty much everything you’ve described here, and somewhat had to go through it myself. She subsequently became my grandmother’s primary caregiver when she wasn’t at work. It’s a super hard journey to go on with a loved one, and while I don’t regret the ways in which we walked with her through it, I wish I’d had this video at the time. Coming out on the other side, for all the pain and relief and grief and peace and darkness and light it has brought my family and I, the biggest things I’ve learned is how important it is to lean on your support network, to check in and communicate with the circle helping to care for your loved one, to remember to live your life even though a new impossibly difficult Thing™️ has been added to it, to cherish all the best moments and to not feel guilty when it all just feels like it’s going to hell. Find the humor when you can, but don’t let yourself stop feeling all the other things, too. Most of all, take care of yourself. Best wishes to you, your family, and your mom 💙
Thank you for sharing this. My father has the same issue and I completely understand what you and your family are going through. Wish everyone the best during this time❤
Thank you so much for doing these videos. I too am going through the same thing with my husband who is going to be 75, and was diagnosed 2 years ago. Same identical symptoms ~ TV remote, phone, etc.,which before, was nothing before. Thank God I’m younger than him. Again, I do appreciate your frankness, knowledge and kindness❤️
My big, maybe biggest fear, is that I will either get dementia or that my spouse will. Thank you for sharing. BTW in Canada we also treat our elders terribly. Unless you have a LOT of money, you are basically warehoused in a low staff facility and given minimal care. Best wishes for your mom to live as happy a life as is possible. You and your siblings are doing what we all hope our kids will do, taking great care of your mom.
So sorry you are going through this. I agree with your feelings on the Medicare/Medicaid situation. Went through this with my mother-in-law. Such a difficult time to go through. Your mother is blessed to have such caring children. Best to you and your mom.
What you and your siblings are going through is so hard. It can feel like such a thankless, overwhelming job but in the end you will be so glad that you hung in there and did everything you and each of your siblings knew how to do.
This is so good! I predict many many people will end up realizing their friends or relatives need an assessment. I’m saving the link to share as needed. I’ve dealt with dementia with several relatives and this is spot on!!
Thank you for making this important video series. My mom is 91 and I am starting to have some of the same questions and concerns. God bless you as you go through this journey.
Thank you for video. I just shared this with my brother. Our mother is / has being experiencing some of these similar symptoms, unfortunately my father just thinks its normal aging . We have suggested getting her cognitive tests but he is in denial as well. We know that there will come a time where , something will need to be done. For now they can live independently together but I know it will only continue to get more difficult for them . Thanks again.
I can’t believe all of the value I have gotten from your channel since I discovered it a few years ago probably before Covid. Your tone invoice feels like a close friend and I want you to know how much I personally appreciate you sharing your information. My prayers are with you and your family during this difficult time, but as I have seen over the years, you will handle this with Grace and godliness. Once again, thank you ❤🎉
Thank you I am 65, rather a hoarder. I know as a Teenager and young adult my daughter found it very stressful, it hurt me when she threw out things of real value that she didn't understand were valuable like gold silver jewellery and ivory. Also high quality things which cost me a lot of money I couldn't afford to replace, such as linen tea towels, she thought new cheap one would be the same. This was done with the best of intentions as she knew clutter upset me. Some things I would search for for hours wanting to use them not knowing they had been thrown out. I have a tiny income and always subsided things like her love of horses, she didn't understand how I scrimped and saved to make sure she had more than I could really afford. I love her dearly. Now I only have to budget for myself I have a few savings I find I can let things go more easily as I know they can be replaced if essential to do so. I no longer have fear of needing something but have to do without. I also couldn't predict my bills or her desires which might be costly. I now feel safe financially so I can dispose of old stuff more easily. I now have begun to think about death cleaning so I don't leave her a burden as an inheritance. Thank you for giving me a few tips. It's a kindness and responsibility for me to do for her when she has to part with me. I want to make it easier for her. 😢
You are so lucky to have a very supportive family thru this journey. In my case I didn't have support from my sibling 😢 Personally I had more support from our neighbor/tenant thru this journey with my father. Thanks for sharing this journey 🥰 God bless
Currently, I'm undergoing testing for dementia, but I think that I know what the bottom line will be (I'm 65 years old). For me, the first sign was forgetting how to use my car keys. This lasted for about 10 seconds before it came to me. I simply thought that it was a one-off seniors moment (I'm getting old, ha,ha). Two weeks later, I forgot how to lower the passenger window in my car. This lasted for about 10 minutes before it came to me and there has been other episodes that are not the normal part of aging. I have no doubt about what the diagnosis will be and I can accept it. What worries me is what I'll forget to do next. I think that dementia reared it's ugly head before I was 60 and still working. My ability to think outside the box and work the problem was becoming more difficult. This could have been simply old age creeping up on me but it also could be the first signs of dementia that I was having. BTW, I scored quite low in the Montreal and St Louis cognitive tests.
Thank you so much for being vulnerable and sharing. My immediate family knows that my dad is developing dementia, just like his mother, but he does not. We missed all the signs in my grandma until my granddad passed away and we realized the extent of her problems. Hearing the symptoms you described going back years is what we've been noticing for the better part of ten years I'd say. There is no way my dad will agree to testing or admitting he's not fully capable, as we can hardly get him to get routine care unless he is very ill, and that was before the behavioral changes and argumentative nature of dementia. I look forward to the rest of the series. I've had my own battle with memory, at 48 I have already had two rounds of the three hour cognitive testing which shows me with mild cognitive disfunction, but not dementia, thank goodness. I'm glad to have these baselines of my own testing however, so that if it hits three generations in a row in my family, I will be able to be diagnosed and make informed decisions earlier rather than later. Thank you again.
You are doing a great service by talking about this! It sounds like you and your family have had a challenging journey to this point. My Mom passed away 10 years ago at 93 with vascular dementia. As long as my father was alive they managed just fine between the two of them. With adjustments and support we were able to keep Mom living in her home until her last few months which was good because she adamantly refused to move and there were very few options in her geographic area. Vascular dementia is interesting in how it affects some brain functions and not others so you really need to understand what functions are affected to provide the right support. We were fortunate that Mom was clear herself about what she struggled with in daily living.
Dealing with my mom’s vascular dementia as well. We’ve been lucky that for the most part she understood she needed to get out of her house to independent senior living, knew when she needed to stop driving and knew when she needed more help. Unfortunately, she did just fall and break her hip and is in skilled nursing but we are in process of moving her stuff to assisted living for when she is released. So hard to see your parent decline like this. My dad died at 63 which you don’t want either but at least he didn’t have to go through this in his later years.
Thank you so very much for this video; it is so timely and I’m grateful it popped up on my feed! We are in this process right now, and I’m so grateful for you doing this. Thank you so very much. 💐
Totally agree with the way you are sharing Barbara’s story. Some of the channels expect gifts and compensation for sharing. This seems petty and degrading to me. Thank you for allowing us to be part of your journey.
Jen…this video was so valuable to so many, and I can’t even tell you how much I appreciated you sharing your mom’s experience. My parents recently moved into a retirement community, and it has sent my mom into a mental health crisis. We believe she is suffering from debilitating depression and anxiety, but we are also in the process of getting cognitive testing done. It has been a very difficult last few months and while we are hopeful, it is incredibly difficult to see my vibrant 84 year old mom struggle in this way.
My heart goes out to you and your family. My Mother had Alzheimer’s and dimentia. It is devastating for the person and the family. Listening to you is almost identical to my experience with my Mom.
What a great video! My parents are now in an ALF, but due to my Dad’s broken hip (just physical issues) and non-recovery from that. Mom can’t care for him, so they’ve relocated. I’m curious as to how your mom is in an assisted living facility with memory issues? In my state, ALFs are not necessarily locked wards as memory facilities are. Thanks for the very helpful info. You’re making a difference, Jen!
Thank you for sharing your experiences with your situation - my mom was diagnosed with Alzheimer’s Dementia over 5 years ago and your spot on with the signs and symptoms. It’s uncanny that we went thru the same exact problems with mom as you did with your mom. I mean the car battery died - I’m all teared up now. I hope this series helps others as it has been for me. Thank you! ❤
Thank you for sharing your, and your family’s, struggle. I have walked in your shoes and it seems to me that each and every one of us has to reinvent the wheel so to speak, in learning by trial and error how to help our loved ones. My first real inkling of how bad this (journey) was going to be when I watched my mom struggle to turn her phone on after running it dead and then recharging it. She would press the button (flip phone) but she didn’t remember anymore that she had to hold the button down for a few seconds in order for it to turn on. And no amount of help or explanation from me helped her to do it. I was dumbfounded.
DO NOT SHOW a vulnerable person in “for profit” videos or any media without their clear consent given when they were 100% compos mentis. Honorable choice to not show your mom. Thank you for that example. ❤
Hi Jen, thank you so much for sharing your experience. This is so generous of you. I live in a different country to my mum and as I think of how I want to support her one day (she’s well right now but we now age comes to us all!) I found your video and your kind storytelling incredibly helpful. I wish you, your mum and your family all the very best! May the generosity you share here reruns many times to you in Operation Princess Barbara - I love how you guys found a bit of humour to take this forward!
Dear Jen, it is really important to spread the knowledge and share the experience. In many ways it is alike mine and my familys. We had difficulties in my family to realize what was going on with my mom, as we puzzled the pieces together, that it was dementia. We were relatively late to get her diagnosis. That was almost 9 years ago, when she finally agreed to assisted living in a seniors facility, now she is for almost 4 years in the Alzheimers unit. I do believe she feels my hugs, kisses and handholds and the love. I do believe that is was makes us human and what counts. Wish you all the best.
Thank you for this video (series). I am at the beginning of this journey with my mother and trying to figure out if she is just forgetful, or if more is going on. It is a scary path to try and navigate as her only child. I will be watching all the segments💖
To see part 2 of this series, head here: ua-cam.com/video/RNULCS3XGPI/v-deo.html
When I became a nurse, I told my mother that when she got old or had dementia that I would not be her caregiver but that I would supervise her care. The first thing I told her to do was to get long term health insurance. Then when she was in her seventies, we found a a retirement community that she liked that had independent living, assisted living and a nursing home. When she was in her eighties, she was doing with Parkinson’s and several years later she started showing signs of Parkinson’s dementia. She transitioned to assisted living then to the nursing home. She died five years later.
Even with all of this planning, each transition was difficult. There were several years when I had a designated tote bag that had Sal her paperwork that I carried often. The work was exhausting physically, mentally and emotionally. But I am proud of how I cared for her.
@@rebeccarobb4121 , personally and also from participating in a worldwide Alzheimer caregiver support group, long-term health care insurance is often not the greatest deal. When you add up how much you spend monthly, and the guidelines for how many days you have to be hospitalized to rehab to nursing home care - we ended up paying out of pocket $5,000 per month on nursing home care because Dad was booted out of rehab. We asked for hospice, and they dragged their feet. So when I filled out the long-term care paperwork, I found out that he wasn't even eligible for the length of stay. It was only going to pay $100 per week which is really nothing. So be careful. Ask questions and have them be very clear on the amount and frequency of payouts.
@@rebeccarobb4121 I like how you define "care": not the caregiver but the supervisor of that care. I think it is the only way to protect one's own physical, emotional and spiritual health.
I believe you made the right (and kind) decision at not taping your Mom. At this point, helping others is a bonus (which we're getting from your sharing of your experience), but maintaining dignity and allowing that if our loved one's decision-making abilities have been compromised, they could also be compromised in knowing full ramifications once an image is sent into the web. Thank you for loving (and protecting) her.
This exactly. I didn’t feel like she could really give consent (just like in the case of kids)
Well said
My moms going through the same thing
You're lucky to have siblings. I'm it. And going through many many of the same things. Struggling to know when to take action.
@@TheCrabbyCrafterlol Me too. It is hard.
My Dad was diagnosed with mixed dementia in 2013 and he denied it and fought against it. The battle of the car keys was a major one in which I, as an only child, had to be the ‘bad guy’. My mom had vascular dementia and Dad was convinced he was her carer and needed the car. I lived 3 minutes drive away and could do any shopping or appointments they needed but it was a pride issue for my dad…
I won’t go into it all but it brought me to the brink, I refused medication but accepted counselling.
I can’t tell you how relieved I was that they moved to assisted living, changed my life from having to be there daily seeing my frail mum being left to my dad’s care and trying to literally save her from his best intentions. They had on site care visits four times daily.
Thank god for the UK NHS at least we didn’t have to even think about the cost of doctors and hospital stays (9 for mom in her last year) or the almost weekly ambulance calls for falls to one or other of them.
My parents died in 2016 and 2019 respectively. I’m relieved they were spared the Covid years as they would not have understood that I couldn’t visit and would have been very distressed. At least they were spared that.
Thank you Jen for sharing your story. It can be very isolating to be in your situation and I think a lot of people will gain comfort in knowing that many other families are facing the same issues with a loved one(s).
I think men, in particular, equate their cars with their freedom. We were unsuccessful in getting Dad to give up his keys even though he lived in a community that provided transportation. One day he lost control on the highway and totaled his car. Miraculously and thanks to airbags, he was shaken but unharmed. His plan was to call the dealership and have a new car delivered and never tell me or my siblings about the crash. Had the police not revoked his driver's license, pending him passing a new driving test, he would have done just that. IMO, he knew he was no longer a safe driver and chose not to reinstate his license rather than being told that he couldn't. I agree that driving is a pride issue, particularly for men.
I’m out doing errands and literally stopped what I was doing to watch this - that’s how important this info is to me. Thank you for caring enough to share your experience.
Robyn I so hope it was helpful.
This really struck home. Mom lost all ability to use the computer, even opening the laptop became too hard...she said it was broken. Last month, she suddenly forgot how to dial a phone. Then the speed dial wouldn't work. The TV has been a problem...if only she had the old one back, she will say. Now, Mom is in her 98th year. So, we care for her, keep her safe. At her age, we won't go to the extent we would if she were younger. She cares for her basic needs, showering, dressing, simple foods that simply require picking up something prepared. Staying ahead of her needs as they crop up, sometimes challenging. I handle finances, etc. Dad died only 3 years ago, and we are all surprised at the rapid decline, but, again at her age...we keep her comfortable. She's blessed with a long life.
Thank you for sharing your story. I’ve been caring for my 86 year old mom with Alzheimer’s for 6+ years, much worse this year and am her full time caregiver. It’s such a heartbreaking disease and is physically, mentally and emotionally exhausting for caregivers with very little support
For what’s it worth, my mom did have cognitive testing which was very grueling. The test occurred somewhat early on when she noticed deficiencies. However, she fell within the “normal” range for her age which is obviously a bigger area than one would think (and you had mentioned). At the time, we were lulled into a sense this was normal aging. Now, only 1 year and 4 months later it’s obvious to everyone, doctor’s included this wasn’t the “normal” aging. The testing for us proved unhelpful. But, I could see having it done at your age to get a baseline could be a wholly different story.
I do hope our experience with our mom proves helpful in some small way; I, too, do wish they/we could have known back then and as her caretakers we could have tried to preserve or slowed down the progression, IF that was even possible for her.
Jen, Thanks for sharing your story.
I have been nodding along, and commiserating with your videos. In my case, I let my mom be the “mom” too long. I tried to get her to cooperate. It didn’t work out well! She had an ‘incident’. Luckily she lived through it and did not hurt anyone else. I worked with the police to have them officially revoke her license because I just couldn’t convince her that she couldn’t drive. Long story short, it took 3 of us to get her into memory care and we had to lie to her to do it. Two months later she believed that she had made the decision to move into memory care by herself. We went right along with that ;)
The journey was traumatic but oh so necessary. She is well cared for. Thank you for putting this information out there into the universe!
We went through this with my dad who has now been gone 3 years. I am now concerned because my mother, who has never been physically healthy, appears to be "slipping." Because of her poor health, I've had a hard to determining what I am experiencing with her. Several things you mentioned hit home. She is 83 and it is so easy to "overlook" things or just say it's her age, but my gut tells me differently. Thank you for sharing your experience.
Thank you for this video. My husband had a hemorrhagic stroke 8 years ago. It’s been such a long journey. He is so lucky to be alive. He can care for himself, but has speech aphasia and cognitive issues. I have noticed things changing, anger, stubbornness and refusal to accept responsibility for his actions. He will be having a cognitive test next week and the neurologist suspects vascular dementia. I’m afraid of the diagnosis, but at least we will know something. Good to know I am not alone ❤
I can’t tell you how much this video has already helped me. My husband was diagnosed with alzheimers and vascular dementia a few years ago. We’ve been managing with him at home, but his physical health has been declining to the point that he’s now in hospital after a fall, and will be transitioning into a nursing home. For about a week after he was admitted to hospital he didn’t recognise me, and that gutted me because I didn’t think he’d come back from that. But apparently there was a massive infection which was also contributing to his level of confusion, and once they got rid of that he knew me again. Naturally this was a huge relief emotionally, but it also brought problems because I then had to explain to him that he was going to be in a nursing home. We’re currently at a bit of an impasse, with him adamant that I’m fully capable of caring for him, and me equally adamant that I’m not. I’m looking forward to your follow-up videos where you speak about that transition.
Your comment rings so true. Facing exactly the same thing.
This series has been extremely helpful to me. I'm walking this journey alone with my Mother. Your blessed to have siblings to help. Thanks for sharing your journey.
My mother is 85 and we’re on this journey now. Thank you for sharing ♥️
@@deebutler2283 my mom is 86 and on the same journey too for 6+ years💔
Bless you for making this video that will be so helpful to others. For years I kind of bought the story from my parents that everything was fine with my mom until I finally acknowledged that I knew what I was seeing and immediately turned around the way I treated her frustrating behavior, instantly regretting the wasted years. In retrospect I figure my mom suffered from Alzheimer’s twenty years, outliving my dad by nine years. Like you, I was fortunate to have very supportive siblings, but as I lived in the same town as my mom I was the one responsible day to day. I always share with persons going through this two pieces of wisdom, the first a practical bit shared by a friend: You will never win a “battle” with a dementia sufferer. It pays to enter their world. The second was a choice I made especially when Mom was totally in my care: Embrace and appreciate with the loved one you’re caring for just as they are right then each minute of the day (and that can change by the moment), never worrying about what they used to be. (I would always think of her as my “new” mom.) By remembering those two things above all the rest, minor frustrations faded away and I was able to spend my nine years with her living in joy, not grief. The grieving did come months later after she died, but it was wrapped in joy.
Bless you. My mom had dementia for thirteen years. She was in assisted living for three years and an Alzheimer's unit for the last five. I am now sixty-nine, and it is my greatest fear.
I assume you have read the work of Max Lugavere, whose mother died of dementia a few years ago. 😢
Oh, Jen, I can't tell you how many times I shook my head in agreement during this video. My sisters and I are on this journey with you. It is one of the hardest things we have ever done. I will pray for you and your family. Hang in there.
My mother-in-law had Alzheimer's and no one suspected for a few years. My heart goes out to you and your family for what you are going through and what you will go through. Do the best you can. It's a horrible disease. I wouldn't wish it on anyone.
LOVE your mom's "Princess Barbara" comment -- it's comforting to know that such a keen observation of self-awareness (i.e., how princesses get taken care of vs. queens taking care of everyone else) is still possible in rare lucid moments.
Thank you so much for your vulnerability in sharing your story with your mom. I can't tell you how helpful it is to me. My sister-in-law has Parkinsons and likely Dementia, but she's fighting getting tested tooth and nail. In the meantime, she's still in control of her finances, her personal care, her driving, and so on, and I'm unable to help until she's declared "incompetent." I fear that if I were to step into that role now, she'd simply remove me from her Trust as her power of attorney, and then she'd have no one. Such a complicated mess of a situation, but your videos do bring me hope and encouragement that we will get through all this. Hoping that your mom is stable and you all have come to a peace of sorts about her care and wellbeing. Thanks again. So very helpful.
I'm exactly in the same situation. Horrible.
Thank you for this content. My father has early onset Alzheimer’s, and it’s brutal to watch a once intelligent and proud man slip away. I wish I had the support system you do. Please continue these videos because they make me feel less alone. ❤
So many of us are dealing with very similar issues, and so this is beyond helpful! Thanks so much
Thank you Jen; another profoundly meaningful video. I agree with your decision not to show footage of your mother. As others have pointed out, she is no longer 100% capable of making this decision for herself. I am walking this same journey with my husband, who was diagnosed with early mixed dementia (vascular/Alzheimers) in late 2023. I feel that even telling people without his consent, or any activity where I feel his consent is no longer informed (even being intimate) seems a bit of a violation or exploitation, as I can’t gauge exactly where he is at cognitively. The diagnosis could have been made so much earlier, but he always found an excuse not to proceed with the recommended testing, esp. during Covid as he is also immune compromised related to transplant immune suppressant medications. I learned recently that the initial symptoms of dementia can present nearly 20 years before it becomes undeniably apparent. Looking back, I can see brief instances or events going back at least 10 years that I dismissed as “one-offs”. I don’t know that things would have changed significantly for us with an earlier diagnosis, although we might have moved into a more simplified living situation. He is now dug in and does not want to move, and I am reluctant to upset his applecart, so we soldier on and try to focus on the many positives.
(Jane) I cried after watching your last video but came away with a better plan and attitude about mine and my parents' journey. Thank you for this video as well-information is power.
Thank you so much for this video. I am in tears as it touches close to home. Not only do I have my elderly mom, my only sibling has suffered from memory issues since a traumatic brain injury in their 20s. It is a tough road. So glad you are bringing light to the process.
this is so incredibly helpful to me. my husband is in this stage now. thank you for sharing your story.❤
I lived in the area you are for 12 years and my father stayed at that assisted living facility for nine years. We found that facility to be very accommodating as his dementia progressed. We have fond memories of his time there. Best wishes to your mom.
I'm so invested in this series, Jen!! My brother and I, along with our spouses (and sadly, our children) are navigating this exact thing with my mother. Our road block is my father. He's not allowing us to to move forward and he won't do what's necessary to get her properly assessed or in a care home. All the things you spoke about!!! The tech issues (she taught programming, now on her fourth phone because of "scammers") the conversations being one sided (always reverting to her family - siblings, parents, the past) and then the driving and getting lost. Luckily, Dad took the keys away. She's an angry person, hyper fixated on the weirdest things (bed bugs are killing all the "females", among other things) and she's frustrating. Our issue too was that she's always been abusive and I'm sort of glad the veil has been lifted and others see it and finally believe me. It's oddly validating?? 🤨
Oh!! How I wish we were closer and could sit down and chat. It's a difficult time. But!!! It's brought my brother and I closer. It's firmed our convictions that we need to take better care of ourselves and purge all the stuff we don't need - Swedish Death Cleaning has helped.
Thank you for this!! I hate to know you're going through similar, but it's good to know we're not alone.
No alone at all!! And I understand what you’re saying exactly. There’s a lot I’m choosing not to share but I see you!
@@JoyfulLivingwithJenLefforge 🥹 thank you! ❤️
I hear you. When they are often angry, and "progress" into the paranoia and fabulation phases, it's really difficult.
I’m glad you decided not to film your mom. You did a great job talking about it in detail while preserving her dignity. ❤️
Your discussion was like a light switch going on. So many parallels to what we are going through with my 87 yr old sister. Thank you. I really appreciate your telling your story and look forward to the next. And I can say I 100% understand how difficult it is. We are 2 years in of the first glimmer that something was not right, 8 months of being certain and 6 months of having to take control of her living arrangements and care-giving. It’s a lot! A whole lot.
Hugs to you Jen. Coming from a student earning their Psy.D., you explained the things about cognitive assessment so well. Thank you for letting us walk this journey with you.
My dad had dementia. It was difficult but knowing a friend knew what I was going through helped
Jen, I am a new subscriber! I am so impressed with your communication skills! You kept my attention so well. My mother did not have dementia, but she was in a nursing home for 5 long years. I know the stress and frustrations associated with caring for your elderly parent who can no longer care for themselves. It is a real tear jerker at times. I was 60 when my mother passed 13 years ago. I also had a brother and a sister who assisted me with our Mom’s care. I look forward to hearing more of your journey with your mother. Thank you❣️
Hi Jen. Commenting before I watch the entire video to show support and say thank you for sharing your story.
Despite the millions of people who need long term care, as a society we are very uncomfortable talking about it.
I have been a caregiver for my grandfather with dementia and my severally mentally disabled sister (my sister was going through puberty while my grandfather was going through dementia).
So many of us have been there where you are standing. You’re not alone.
Oh Natalie that’s so very difficult. And you’re right we don’t talk about it nearly enough!
Thank you. These videos have been a life line. I’ve learned so much from your generosity. Thank you, thank you, thank you!
Well said! I have been down this road with my Mother and now with my husband.
Mom is in memory care now. No formal cognitive assessment was ever done. Dad just took care of her. He died in March. She may have what your mom has...both Alzheimers and vascular. We have seen the changes happening over the last 10 years. She is 93 and in poor health. Thank you for addressing this, there are people that need this information.
My father had dementia, he passed in 1997. It was a very difficult time, there is no right way to go, you have to figure it out along the way. Blessings to you and your family.
Jen, this is such an important topic to discuss. Our nation is seeing the start of epidemic levels of dementia in our older population. Sharing your journey is going to give support to so many others. Thank you.
Thank you for being so brave and sharing your story. My mom has dementia and it was about 7 years before we figured it out. She was smart enough to out smart the tests. Some days will be better than others when I get a glimpse of my old mom when she laughs. It’s a hard road to travel that is difficult to understand unless you have been on it.
❤
My mom was diagnosed almost 2 years ago - She was outsmarting her cognitive tests as well. She has declined quite a bit in the last 6 months - seems declines take place almost overnight. At some point her assisted living will do their assessment and I'll be curious to see how she tests next time.
I absolutely agree with your decision to not film your mum.
I remember her from your many Christmas videos especially with the advent calendars.
Your all doing a great job in a situation that is totally out of your control and comfort zone.
My dad is 84 and we have very one sided “ selfish“ conversations he also is profoundly deaf…awaiting medical treatment. This doesn’t help with conversations!
Take care Jen especially of yourself,as you need to be well to help with your mum…..
Thanks for sharing this very sensitive topic….👍🇬🇧
This is the clearest and most honest account of the dementia journey that I have ever found, anywhere. The details you describe about the difficulties surrounding the stages preceding official diagnosis, cognitive testing, technology use, car driving, finances, the self-centered conversations - all of it - rings so true. I'm the sole carer for my husband and even the next stage - home care, not to mention a move to assisted living - will be very difficult. I live in a European country and therefore the assistance available is low cost and some of it is subsidised or free which helps. Thank you so much for your frankness and humanity.
Honestly that means more to me than I can say. I hoped to make a video that I couldn't find when we were going through it. Hang in there - none of these decisions are easy and it's a heartbreaking season of life.
I feel like your mom’s journey and my mom’s journey and progression of symptoms are almost mirror images. I totally identify with everything you said, I unfortunately don’t have any sibling support. My mom is now in a nursing home and though she still seems happy to see me, she can’t really carry a conversation (aphasia). She was always such a formidable personality, it makes me sad what dementia has done to her.
We had a really good conversation the other day (surprisingly good) and every time that happens I wonder if it's the last time . . .and there's no way to know it could be next week or 3 years from now. I'm so sorry, Kim. Hang in there and I will, too. The grief is not only impossible it's very unfair.
By you doing this series, you will surely be helping countless families. Blessings always to you and your family ❤❤❤❤
Very helpful video, Jen! We went through this process 20 years ago with my Mom. This would have been a great resource. Keep up the great work!
I remember, as a child, my mother going through this with her mom and just how hard it was. As an only child I always worry I may face this with her one day and it be a 1-on-1 fight. I am looking forward to your video on the signs you saw and how you dealt with it.
I couldn't "like" anything less, I'm so sorry, but thank you so much for your openness and honesty in this painful matter!
I have been watching your channels for many years, I first found you when I was doing DVC research. I’ve enjoyed your travel videos, Disney , and home vlogs. But I have to say your last couple of videos have really touched me. It’s as if you’re speaking directly to me as I am now finding myself in a very similar situation. Thank you, thank you for sharing your experience because you are truly helping others. God Bless to you and your entire family.
Great information!
Glad it was helpful!
Your mom is from the Silent Generation: Born 1928 to 1945, not the Lost Generation. These are very insightful and helpful videos. Thank you.
Jen, my heart goes out to you and your family for the journey you're on. Hearing these stories makes me eternally grateful to my mother for being self-aware and humble enough to decide she didn't want to live out on the farm alone any more. One day she just called and said she'd put down a deposit at an assisted living facility and could move in any time. A few years after that she decided driving was making her nervous and she asked my brother to help her sell her car. I hope I can have such grace for my kids' sakes when it's my turn.
Thank you for sharing your experiences. My sister and I have been navigating the same with our mother. So much of this echoes my own experiences -- her sudden struggles with technology, her troubles with finances, and my struggles with asking versus directly guiding her to the care she needs.
I thank you for being so open in telling your story which you do in a cohesive and logical manner. My parents did not have dementia, I saw several family and friends deal with their parents who had dementia, but my parents did need to move to assisted living in their final years. While we knew it would be best for our parents, it was still, for all concerned, an emotionally difficult step to take. It required a paradigm shift, and I leaned on a comment from my sister's friend who said it was getting comfortable with loving our parents differently. I hope you are comfortable with your decisions, while they can be difficult to get to, they are for the best. But moreover, I hope you find comfort knowing that your mom is in a living situation where there is community, supervision, emotional support, physical assistance, and care.
I am a year younger than you and unfortunately I have already lost both of my parents to this awful disease. I’m so sorry for what you and your family are going through.
My sister and I are going thru this now with our mom. Thanks for putting this out there. This is exactly what we are going thru.
Thanks Jen for sharing this series and your experience with your mother. I'm going through something similar with my mother and it's been so much to try and learn and figure out the system. My mother is also quite bright which does make testing a challenge. She originally told me she had alzheimer's but it turned out it's currently MCI with amnestic presentation. My mother actually wants to go to assisted living, but, physically she's in very good shape and not needing physical assistance. And while her memory has some definite disturbances in that space and time continuum, she seems for now, and according to the doctors to be somewhat stable. As you mentioned the assisted care is sooo expensive. When she sells her house, I'm hopeful the proceeds will pay for at least the two years out of pocket for the assisted care, but my fear is that if things stay stable at this level, she'll spend all her funds before she officially qualifies, and then get kicked out. Somehow we're supposed to plan for the future without knowing what it's going to be and it's so hard to find honest, affordable guidance. Medicare/Medicaid are shrouded in mystery! So helpful to hear your story. Look forward to the following episodes. Thx and best to your and your family!
My husband has something going on but has not been diagnosed. Good information
I’m so glad that I found your video! I am now going through the early stages of vascular dementia with my Mom. She’s 92 and lives in her home alone. I live 45 minutes away and go to see and do for her once a week. Unfortunately it’s only me. I have no siblings and all of Mom’s siblings have passed away. She is now thinking some of her sisters are still around. I have resorted to saying that they no longer live close and they have no phones. She sometimes questions why she can’t remember things and it’s getting worse each day. I haven’t said anything, but do you tell them they have dementia? Three of her sisters also had dementia. It is getting mentally trying on me to the point of my patience wearing thin. I’m having the worse time convincing her she needs to be in assisted living closer to me. I’ll be honest, I don’t know which way to turn! Any directions would be greatly appreciated!
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Hi Jen - so sorry to hear about your mother. My grandmother had alzheimer's and I do worry about this with my own mother, who is in her 70's at this point so, it is very helpful. It must be incredibly challenging so, thank you for sharing your story.
All of these things sound so familiar, I feel for you all. It is so difficult when they’re used to being so independent to then have to convince them that they might need some help. Also when you don’t see them every day it takes a longer time than it should to connect the dots with the different signs.
I’m glad she’s now getting the help she needs and will be much safer. ❤
It's really difficult to convince them that you can't do all the helping and you have also to see to your own well-being!
Thank you so much for this content. I am an only child going through this by myself right now and the parallels with your mom and my mom are so familiar This has been so helpful.
Bless you for sharing your journey. We went down that road 16 years ago and there are many things to be learned along the way.
I grew up in Crabapple & live about 15 miles to your west. Practically neighbors.
I’m so sorry that you and your family are going through this right now. My mom died from Creutzfeldt-Jakob disease in 2015. She started having memory problems in February 2015, and she passed in April 2015. Watching a loved one slip away is so hard. I’m sending many prayers and hugs to you and your family. ❤
My dad died of the same disease at age 50.
Thank you for sharing. May God bless you, your siblings and most importantly your beautiful princess mom on this journey. 🙏🏻
This was very helpful. My father in law at 91 has been in the hospital for treatments the last month. We are seeing signs with my mother in law of something with her brain certainly going on at 86 after his crisis is over all focus will be on her. When people age you expect some things to happen but you said things so clearly on what to look out for that was so helpful. Thank you Jen my heart goes out for you on your journey with your mom.
Thanks for making this series. About a year and a half ago, my grandmother - another Barbara! - passed away after living with vascular dementia for quite some time. My mum and I were living with her when she got diagnosed, and I watched my mom go through pretty much everything you’ve described here, and somewhat had to go through it myself. She subsequently became my grandmother’s primary caregiver when she wasn’t at work. It’s a super hard journey to go on with a loved one, and while I don’t regret the ways in which we walked with her through it, I wish I’d had this video at the time. Coming out on the other side, for all the pain and relief and grief and peace and darkness and light it has brought my family and I, the biggest things I’ve learned is how important it is to lean on your support network, to check in and communicate with the circle helping to care for your loved one, to remember to live your life even though a new impossibly difficult Thing™️ has been added to it, to cherish all the best moments and to not feel guilty when it all just feels like it’s going to hell. Find the humor when you can, but don’t let yourself stop feeling all the other things, too. Most of all, take care of yourself.
Best wishes to you, your family, and your mom 💙
Thank you for sharing this. My father has the same issue and I completely understand what you and your family are going through. Wish everyone the best during this time❤
It’s so hard! The biggest struggle is keeping them safe while preserving their dignity and it’s tough. Thank you for understanding!
Thank you so much for doing these videos. I too am going through the same thing with my husband who is going to be 75, and was diagnosed 2 years ago. Same identical symptoms ~ TV remote, phone, etc.,which before, was nothing before. Thank God I’m younger than him. Again, I do appreciate your frankness, knowledge and kindness❤️
The Sherzai’s are the national brain experts on avoiding dementia. They have books and videos. ❤❤❤❤
My big, maybe biggest fear, is that I will either get dementia or that my spouse will. Thank you for sharing. BTW in Canada we also treat our elders terribly. Unless you have a LOT of money, you are basically warehoused in a low staff facility and given minimal care. Best wishes for your mom to live as happy a life as is possible. You and your siblings are doing what we all hope our kids will do, taking great care of your mom.
So sorry you are going through this. I agree with your feelings on the Medicare/Medicaid situation. Went through this with my mother-in-law. Such a difficult time to go through. Your mother is blessed to have such caring children. Best to you and your mom.
I am not walking this path currently but my thoughts and prayers are with you and your family. Thank you for sharing your story.
What you and your siblings are going through is so hard. It can feel like such a thankless, overwhelming job but in the end you will be so glad that you hung in there and did everything you and each of your siblings knew how to do.
This is so good! I predict many many people will end up realizing their friends or relatives need an assessment. I’m saving the link to share as needed. I’ve dealt with dementia with several relatives and this is spot on!!
Thank you for making this important video series. My mom is 91 and I am starting to have some of the same questions and concerns. God bless you as you go through this journey.
Thank you for video. I just shared this with my brother. Our mother is / has being experiencing some of these similar symptoms, unfortunately my father just thinks its normal aging . We have suggested getting her cognitive tests but he is in denial as well. We know that there will come a time where , something will need to be done. For now they can live independently together but I know it will only continue to get more difficult for them . Thanks again.
I can’t believe all of the value I have gotten from your channel since I discovered it a few years ago probably before Covid. Your tone invoice feels like a close friend and I want you to know how much I personally appreciate you sharing your information. My prayers are with you and your family during this difficult time, but as I have seen over the years, you will handle this with Grace and godliness. Once again, thank you ❤🎉
Thank you I am 65, rather a hoarder. I know as a Teenager and young adult my daughter found it very stressful, it hurt me when she threw out things of real value that she didn't understand were valuable like gold silver jewellery and ivory. Also high quality things which cost me a lot of money I couldn't afford to replace, such as linen tea towels, she thought new cheap one would be the same. This was done with the best of intentions as she knew clutter upset me. Some things I would search for for hours wanting to use them not knowing they had been thrown out. I have a tiny income and always subsided things like her love of horses, she didn't understand how I scrimped and saved to make sure she had more than I could really afford. I love her dearly. Now I only have to budget for myself I have a few savings I find I can let things go more easily as I know they can be replaced if essential to do so. I no longer have fear of needing something but have to do without. I also couldn't predict my bills or her desires which might be costly. I now feel safe financially so I can dispose of old stuff more easily. I now have begun to think about death cleaning so I don't leave her a burden as an inheritance. Thank you for giving me a few tips. It's a kindness and responsibility for me to do for her when she has to part with me. I want to make it easier for her. 😢
You are so lucky to have a very supportive family thru this journey. In my case I didn't have support from my sibling 😢 Personally I had more support from our neighbor/tenant thru this journey with my father. Thanks for sharing this journey 🥰 God bless
Currently, I'm undergoing testing for dementia, but I think that I know what the bottom line will be (I'm 65 years old). For me, the first sign was forgetting how to use my car keys. This lasted for about 10 seconds before it came to me. I simply thought that it was a one-off seniors moment (I'm getting old, ha,ha). Two weeks later, I forgot how to lower the passenger window in my car. This lasted for about 10 minutes before it came to me and there has been other episodes that are not the normal part of aging. I have no doubt about what the diagnosis will be and I can accept it. What worries me is what I'll forget to do next. I think that dementia reared it's ugly head before I was 60 and still working. My ability to think outside the box and work the problem was becoming more difficult. This could have been simply old age creeping up on me but it also could be the first signs of dementia that I was having.
BTW, I scored quite low in the Montreal and St Louis cognitive tests.
Thinking of you and your family on your Mums difficult journey. ❤
Thank you so much for being vulnerable and sharing. My immediate family knows that my dad is developing dementia, just like his mother, but he does not. We missed all the signs in my grandma until my granddad passed away and we realized the extent of her problems. Hearing the symptoms you described going back years is what we've been noticing for the better part of ten years I'd say. There is no way my dad will agree to testing or admitting he's not fully capable, as we can hardly get him to get routine care unless he is very ill, and that was before the behavioral changes and argumentative nature of dementia. I look forward to the rest of the series. I've had my own battle with memory, at 48 I have already had two rounds of the three hour cognitive testing which shows me with mild cognitive disfunction, but not dementia, thank goodness. I'm glad to have these baselines of my own testing however, so that if it hits three generations in a row in my family, I will be able to be diagnosed and make informed decisions earlier rather than later. Thank you again.
You are doing a great service by talking about this! It sounds like you and your family have had a challenging journey to this point.
My Mom passed away 10 years ago at 93 with vascular dementia. As long as my father was alive they managed just fine between the two of them. With adjustments and support we were able to keep Mom living in her home until her last few months which was good because she adamantly refused to move and there were very few options in her geographic area. Vascular dementia is interesting in how it affects some brain functions and not others so you really need to understand what functions are affected to provide the right support. We were fortunate that Mom was clear herself about what she struggled with in daily living.
My prayers are with you on this unwanted journey.
Dealing with my mom’s vascular dementia as well. We’ve been lucky that for the most part she understood she needed to get out of her house to independent senior living, knew when she needed to stop driving and knew when she needed more help. Unfortunately, she did just fall and break her hip and is in skilled nursing but we are in process of moving her stuff to assisted living for when she is released. So hard to see your parent decline like this. My dad died at 63 which you don’t want either but at least he didn’t have to go through this in his later years.
Thank you so very much for this video; it is so timely and I’m grateful it popped up on my feed! We are in this process right now, and I’m so grateful for you doing this. Thank you so very much. 💐
Totally agree with the way you are sharing Barbara’s story. Some of the channels expect gifts and compensation for sharing. This seems petty and degrading to me. Thank you for allowing us to be part of your journey.
Jen…this video was so valuable to so many, and I can’t even tell you how much I appreciated you sharing your mom’s experience. My parents recently moved into a retirement community, and it has sent my mom into a mental health crisis. We believe she is suffering from debilitating depression and anxiety, but we are also in the process of getting cognitive testing done. It has been a very difficult last few months and while we are hopeful, it is incredibly difficult to see my vibrant 84 year old mom struggle in this way.
My heart goes out to you and your family. My Mother had Alzheimer’s and dimentia. It is devastating for the person and the family. Listening to you is almost identical to my experience with my Mom.
Hi Jen. What a great thing to do for us. I can’t imagine how hard this has been to see happen. Thanks for sharing here and Threads.
What a great video!
My parents are now in an ALF, but due to my Dad’s broken hip (just physical issues) and non-recovery from that. Mom can’t care for him, so they’ve relocated.
I’m curious as to how your mom is in an assisted living facility with memory issues? In my state, ALFs are not necessarily locked wards as memory facilities are.
Thanks for the very helpful info. You’re making a difference, Jen!
Thank you for sharing your experiences with your situation - my mom was diagnosed with Alzheimer’s Dementia over 5 years ago and your spot on with the signs and symptoms. It’s uncanny that we went thru the same exact problems with mom as you did with your mom. I mean the car battery died - I’m all teared up now. I hope this series helps others as it has been for me. Thank you! ❤
Thank you for sharing your, and your family’s, struggle. I have walked in your shoes and it seems to me that each and every one of us has to reinvent the wheel so to speak, in learning by trial and error how to help our loved ones. My first real inkling of how bad this (journey) was going to be when I watched my mom struggle to turn her phone on after running it dead and then recharging it. She would press the button (flip phone) but she didn’t remember anymore that she had to hold the button down for a few seconds in order for it to turn on. And no amount of help or explanation from me helped her to do it. I was dumbfounded.
DO NOT SHOW a vulnerable person in “for profit” videos or any media without their clear consent given when they were 100% compos mentis. Honorable choice to not show your mom. Thank you for that example. ❤
🌹 Thank you so much for providing examples of the warning signs. This video was so helpful.
Hi Jen, thank you so much for sharing your experience. This is so generous of you. I live in a different country to my mum and as I think of how I want to support her one day (she’s well right now but we now age comes to us all!) I found your video and your kind storytelling incredibly helpful.
I wish you, your mum and your family all the very best! May the generosity you share here reruns many times to you in Operation Princess Barbara - I love how you guys found a bit of humour to take this forward!
Dear Jen, it is really important to spread the knowledge and share the experience. In many ways it is alike mine and my familys. We had difficulties in my family to realize what was going on with my mom, as we puzzled the pieces together, that it was dementia. We were relatively late to get her diagnosis. That was almost 9 years ago, when she finally agreed to assisted living in a seniors facility, now she is for almost 4 years in the Alzheimers unit. I do believe she feels my hugs, kisses and handholds and the love. I do believe that is was makes us human and what counts. Wish you all the best.
Thank you for this video (series). I am at the beginning of this journey with my mother and trying to figure out if she is just forgetful, or if more is going on. It is a scary path to try and navigate as her only child. I will be watching all the segments💖
Jen, thank you for sharing this experience ❤️ Thinking of you and your mom today
Thank you so much, Tammy! Taking it a day at a time. Some days are better than others so we just celebrate the wins.