Interested in more caregiving tips and support? Check out our Care Course for in-depth guidance and a supportive community. Click here to learn more: careblazers.com/for-families/
After reading the comments, I am glad I was accepted for medicaid and my wife will rec care in a nursing home that loves her as much as I do. Yes,I take a financial hit but this is best course for the 4 children if I was to pass. I visit her daily with a loving heart and not isolation,frustration and guilt. Thank you, you saved this caregiver's life.
For me, care giving Sucks as I am not a caring person by nature. It's just how I am. However, the only way I can make caring for my husband with vascular dementia tolerable is to focus on what I am amazing at and that is "getting it done" when it comes to his meals, meds, scheduling his doctor's appointments, etc., I do not have to "feel" anything (which I don't) in order to do what only I can do, by the Grace of God. Yeah, sounds "hard core" but, it's the only way I can survive the "hell" that is for me, being a care giver. I don't need to "feel" anything, the joy for me is in the doing and the cool people I get to meet along the way. Oh, and by the way, Dr. Natali is one incredible lady both inside and out! Careblaze on, y'all!!
Yes, I've been like you but I found that if I do not allow time for myself, I get irritable with my LO So I take time to exercise and do some activity away from home that I enjoy.
We are who we are….you recognizing that, and adapting is a great example of a successful caregiver. We cannot give more than we have, but you’ve taken what you’ve been given and turned it into a tolerable life. Not a good life I know, and I hope you keep finding little pockets of joy.
Love is not a feeling, but an act of the will… I relate greatly to what you wrote, with very similar strengths. I’ve prayed for help, and I’m seeing answers to prayers. In my situation, I’m looking for ways to improve my gentleness while also having a handicapped child who needs my time, and a house that I hadn’t made a home before my folks needed help desperately by 2018, when I had just purchased the two-bedroom house - and still had to do construction in 2023 for reasonable adaptations, after my dad moved in with me…
Great information! I have no doubt that my 86 year old mom will outlive me and am her caregiver 24/7. I have serious health issues, constantly having to cancel or reschedule my appointments because have no one to be with her and have tried so many times. It’s physically, mentally and emotionally exhausting
Thank you Dr. Natalie for this i feel like number 3 is definitely me ! I struggle with this . I cannot tell my 89 yr old mom with Alzeihmers when i go away for even a day she gets panicked . Even a few hours. I have to make something up. Taking care of myself and my health and my husband and my Mom all is overwhelming. I have to let alot of things go and that’s ok. I do feel guilty when my husband wants to go away for the weekend and it makes it extremely difficult to find someone to care for my mom so we just don’t go anywhere. Then he feels resentful. And it’s hard to find good reliable people. I have no sisters or brothers to help. My brother lives 10 hours away. The burden is all on me i feel bad even saying that. But this is not how I envisioned my 60s 😮! One day at a time .
Guilty of #3. I have to remind myself (daily) that This Is My Life. I don't get to push pause & then start life back up once my HWD passes away. Recently my mom asked me how I wanted to celebrate my milestone birthday. My immediate response was to celebrate a different milestone when I become a widow. I told her the thought of figuring out what to do with my spouse during the celebration was way too much to even contemplate. I'm working to change that misguided mindset.
I feel the same way too. My husband is 25 years my senior. It’s been a tough journey. Trying desperately to keep him at home but it’s getting more and more challenging. I feel for you, but Happy Birthday!!!🎉❤
My health severely declined while taking care of my father. When I really needed help, my family couldn’t step in. After I was hospitalized, everything my dad and I owned of value was sold to put him in care. A lot of the time, we can’t take care of ourselves. There’s no full night’s sleep. There is no one to clean or cook.
My 81 year old husband has been ill since March 2006. It changed my life completely. I have had to give up opportunities to travel or go on vacations. My entire life consists of cooking or foraging for food, washing clothes, washing dishes, emptying urinals, bagging feces, etc, etc, etc. I am so lonely that sometimes I wish that I would go to sleep at night and not awaken the next day. I wonder whether he will live another 20 years and will I still be doing this until I die. Right now, I have no joy in my life, and I’m so sad and depressed.
Thanks to Dr. Natalie I am doing better. I have fully endorsed all three lies and it was killing me. I watch over my mother in law who has never really liked me so I began my journey on a bad note. My MIL has always been reclusive and opinionated so even on a good day she didn’t want to go out around other people or have anyone in her house. She also has etched in stone beliefs about what foods she can eat. Vanilla ice cream is her largest portion of her diet. For Thanksgiving our little town delivers a full turkey dinner with all the fixings to shut ins. She is 83 and lives alone and was absolutely delighted by the horse and buggy delivery of her meal. She eats like a bird but she loved the turkey, dressing, green beans and pumpkin pie. She ate about half a plate and I helped her put the leftovers in the refrigerator. Next day when I arrived to help her reheat the food, I couldn’t find it in the refrigerator but did locate it all in the trash. She didn’t recognize it and forgot how it got there. In her mind it was not safe so she threw it out. I was used to her dumping food but it surely did pull at my heart to see dinner in the trash. But then I think…….there but for the grace of whoever go I and remember that I was able to enjoy my dinner and leftovers. Such an impossible disease to manage. Thanks to all you care blazers who keep me mostly on track!
As a caregiver for a company… I encourage my patients husband or wife to relax and take a nap when I come, to go out to lunch with friends and to never feel guilty to get more help when stress levels rise. Because if the caregiving family or spouse gets ill…. Both of you will need a caregiver. Take care of yourself too ❤
Controlling my thoughts is the key to surviving this difficult situation. Now I am getting control of my anger and other negative habits. It’s getting so much better now. Thank you so much.
My husband is in early stage dementia. I no longer feel I can go away overnight so no more solo visits to children which I really miss. I have been working on building in time away at home. I belong to an online writers group that focuses on short fiction. I email and phone friends ( speaker phone means I can chat while I do meal prep). I do crafts and garden and enter things in the local fair. I can knit while I talk with my husband and then feel I accomplished something when I have a new pair of socks. I watch UA-cam videos on travel so I can enjoy other countries from my home. I go to church and a Ladies group and if it gets to the point where I can't leave him for those times, I will hire someone to stay with him so I can keep going. I have hummingbird feeders because the birds are so pretty to watch. I try to make my home a pleasant space. I don't get any emotional support from my husband so I look for it elsewhere. I wouldn't care if he criticized the meal. I would know that I had prepared a healthy meal for him and that's what counts.
Dr. Natali thank you so much for your continued inspiration, education, and heartfelt support during these difficult and challenging times caring for a LOWD🙏🙏🙏
We always ask each other in our care group how each of us how we are doing and what we we have done for ourselves each week so true how we forget to look after ourselves ❤
The Dementia Careblazers group has been so supportive. Also, Dr. Natali's Formula for Change has helped me so much in how I think about and handle situations. It takes some time and effort to understand how to work the formula, but it is worth it. Dr. Natali has other in-depth trainings on the formula, especially in her course. I have used the formula not just for caregiving, but for all other areas of my life. A big thank you to Dr. Natali! ❤
⭐⭐⭐⭐⭐ This video is packed with great information! I struggle with all three lies. I'll have to come back and listen again. Know that I have to be changing my thoughts that are dragging me down! LO is sleeping right now. That's when I can tune into and hear your videos. God bless you there are many stars in your crown!
Yes, self-neglect is real. A Texas-based dementia care channel shared their state's statistic: about 60% of dementia caregivers die before their loved one. This death rate went down only 5% for adult chidren caring for a parent. Chilling.
Dr Natalie, I cannot thank you enough for this video It was so timely!! I was going through his phase where I felt I was not doing enough for my LO and also that I needed to change things to make it better. Your video was so enlightening and took away the guilt I was feeling. Thank You so much Dr. Natalie for what you do. Regina
How incredibly sad. My physician warned me if the same thing and it would be necessary for me to make changes. And that was the big question… what would happen to my husband if I died?
Wow this is so me. All three of these. I am so tired, exhausted I can't think at times. I get no sleep most of the time as my mom is up every hour or so to use the restroom. I feel J need to get up to help her as she uses a walker and is on oxygen. So I need to make sure she does not trip on the cord. I do put off my appointments for the mist part.
Great advice today. Mahalo!I get frustrated I can’t keep my husband buisy and get all the chores ect done. My husband sits with his I pad all day if I don’t take him for a walk, and figure out something else. He has no motivation or stamina. Behavioral frontal temporal lobe dementia. Only 66 ys old. I’m figuring things out with time, and trying your good advice. Thanks again, blessings and Aloha🌺
I would feel like my husband was just having a bad day and didn’t care for the meal he’s always enjoyed. Hard to hear as we do take things personally.❤
Thank you. Yes, my health has suffered now. I'm trying some more care for myself and follow up better with my doctors. My mother has been hospitalized 5 times since March. I live with her and 24/7 care. I'm retired nurse. It's absolutely way to much. I'm 58 and I have been very concerned about making plans about when I'm sick ect. And things being in place for myself and children/ grandchildren. Anyway, it's very hard. She didn't want home care to come. ( to help me) and I sure did not want arguments to break out. My father, is hard of hearing and so it's double. Better sleep and my healthier eating has helped alot. Then, totally relieving stress as best I can. It's gotten a little better. Looking forward to my follow ups with my doctors. I have Leukemia and the stress did kick in on anemia. Then, some BP issues that I haven't had before. Went straight to my doctors when it started. Please 🙏 everyone really take care of your health and needs. Anyway you can do it. ❤ Love to all and thank you for your videos and teaching information. It's a blessing!
One thought of “what if something (critical or fatal) happens to me”: Do I already have a terminal diagnosis as my dad does? If the answer is no, I need to maintain my health. The challenge to keep doctor appointments for myself: how do I find an honest aide, when my dad rejects all help from anyone but me?
I should add that my dad is home bound on hospice, and we barely get out to the yard IF the weather is close to or more than 70*. Dragging him to my dental or other appointments during which his care is compromised by my unavailability is definitely NOT an option. I’m figuring that this phase won’t last forever, and I’ll just get my personal de-stress time like this, on UA-cam or in the yard gardening as possible (with a baby monitor), for now.
I'm 56years old, first of the year my Mom moved to my house, me and my husband going through all these 3 lies because we love Mom, the way our life feels like its on hold, even if pay to get little help for trusted caregiver have no experience, but she is family member we get her for 3 days a week that is what we can afford, but she can stay with Mom for limited time that we can go out the house do what we need to do for shopping and other important stuff, the thing is we have no time for our life, it feels we need vocation time just to our self, I'm not sure how that will happened but we try and its the key word, we try to arrange some quality time for us considering Mom's safety. on the other hand my concern if something happened to my Mom through my vocation, i will not forgive my self that i was far away from her, in her condition so far we can do limited things for her close places around the house .
Certainly number 3 is the hardest. There are times when I get low and overtired and react when I shouldn’t. I am human and do have lapses but I try not to punish me just pick myself up and carry on.
There are so many of your tips that I would love to be able to do… and if it were just me and my partner (parkinsons and PDD which is getting worse very quickly), maybe I could. We also have two daughters.. 16 and the other almost 13. Youngest was diagnosed autistic at 6. Eldest was diagnosed autistic/adhd at 12. So both ASD/ADHD with PDA profiles. They are A LOT! And my eldest didn’t cope at all when she started high school. We tried for months, but I had to take her out. Ever since then she’s done high school from home online. So she is ALWAYS here with me too. Her younger sister attends high school but half the time she will refuse to go or there’s issues at school. And they both aren’t keeping up with any school work as it’s a demand on them and that doesn’t work with PDA 😢 So there’s that… then last year I was diagnosed with autism in march myself as well as CPTSD, BPD, MDD, dysthymia, adjustment disorder, anxiety disorder… (some of them we already knew) and then in December I was also diagnosed with ADHD. That one hit hard! But all of my own stuff makes it almost impossible to keep up with anything. Time blindness is a HUGE issue for me 😢 Constant demands from all three of them, (oh and I have a PDA profile too!) and most of the time feel like I’m losing my mind! I’m getting about 3 hrs sleep a night and have for months. Even when he is settled some nights, I have bad insomnia and sleep issues (ppl with ASD and adhd often do) and I have to get up early to do meds and the school run etc. I was hospitalised in June and have needed it again since, but I can no longer go to hospital and get well again and have a break. He has declined very fast in the last month or 2 so getting help for myself is not an option. We have no family or friends nearby who help. My mum lives an hour and half drive away… and she also has Parkinson’s. 😢 My partner is worse at this stage but I can see mum declining too. Just… don’t even know how I’m supposed to do any of this! I don’t ever get to be by myself. So when people tell me I need self care and to take time out for me it makes laugh!! There is none!! Not everyone is that lucky! It’s been like this for years now. And it’s only getting worse. People have no clue how brutal this is!! I can hardly breathe!
Keep in mind, also, Safety and Happiness is a BALANCE. Please don't place safety above happiness. This is very much the common ideology in care homes. "We must keep them safe!" Keeping them safe is how the care homes used to justify tying them down to a wheel chair (and why ERs and hospitals still tie down dementia patients for weeks at a time). Dr. Atul Gawande wrote an EXCELLENT book on this called Being Mortal and it's currently being taught in medical schools. However, the mentality of most doctors, caregivers and nurses is still "Safety First!" I know my Loved One would have rather lived a MUCH shorter life with dementia than lived a long suffering one because we were all being so safe. Yes, take the keys and check book away when it's right. But put a tracker on them if they want to stay in their home... even if there are very hot summer days. Looking back my Loved One would have jumped at the chance to have a heat stroke and had this horrible disease over with fast... And been allowed to stay in his home until the end. So be careful about "Safety First" ideologies. (And as an aside, for the love of God, do not let any doctor talk you into anything that requires anesthesia!! If your loved one needs surgery or will die, even if it's in the early stages of dementia... It's a sad blessing and it's time to say goodbye.)
I’ve heard anesthesia can be bad for them, but the family and Drs will think I’m crazy not doing an important operation. I’m listening. I need to know this! So no colonoscopy ect? ( in your opinion)
@@stacieboucher1570 Yes, I'd say the days of colonoscopies are over, for sure. Do you have a neurologist? They should back you up , especially if they specialize in dementia. If your GP insists or doesn't seem to understand, try to find a new, younger one. The younger ones, fresh from residency, get some training on end of life conditions and issues. But, yes, also to your point about family and medical systems not understanding how to stop prolonging life (even during advanced dementia, even with advanced directives clearly written, even with a POA who doesn't want to prolong life, even with a patient clearly suffering). We all hope we will find a caring medical system that will guide us through the process and advise us on when to stop prolonging ljfe. But, this is only going to happen when it is beyond, by many miserable years, the humane thing to do You have to protect them from this aspect of the system as best you can. IMO, when you get dementia, your best hope is that something else will take you out first. Sometimes, I think so many people think this is only a process of taking care of someone. But I think (my opinion) it's primarily a process of Letting Go of them. The sooner you (and your family) can do it, the better it is for them 😔 Search UA-cam for Being Mortal. They did a documentary on this.
@@stacieboucher1570 I want to tell you a story about what my Loved One's doctor told me about how he and his family handled his own father's death... It is very different than what he was telling his patients to do. He was my Loved One's urologist and he was telling me I had to do a surgery. My loved one was in the early middle stage. After insisting, etc, he walked out and I chased after him, he turned to me in the hallway and he said, "I know what you are thinking. My family is one of all doctors and when my father was terminally ill, he needed this surgery too. But we knew the recovery would be a torture for him. SO, we decided not to get it. I am a urologist and I know how easy this surgery is but I still agreed with this decision. He died without having to go through it. See you next week for surgery!" And he hurried off.
One more thing to note. Just 40 years ago, the average lifespan with dementia was 4 or 5 years. It's now 10 years and growing. Doctors are getting better and better at prolonging life with disease. These aren't good years.
My husband just brought up tonight what would happen if I died, then I watched this video. I think he worries about it a lot. I told him I would write up some instructions for the kids to take care of for him.
I walked three miles home after dropping my car at the garage even though my mom offered to pick me up...she hasn't driven in almost a year...don't want her to drive. I needed the exercise anyways!!!
Dear Dr Natalie, I doubt that the situation with my LOWVD & PARKINSONS-PLUS is totally unique, but I want to share anyway! For as long as I have known my wife, she has always had psychological issues and the old tranquilizers for treatment. As time passed by so she became addicted to many prescription CNS drugs, especially those containing Codeine! Now she is receiving treat for some 22 tablets a day which also affects her cognitive skills. So in short, I am having a struggle with my wife wanting to be knocked out all of the time or I'm the bad guy for not giving in to her!
My husband with dementia is scared that I may die before him (I am 4yrs older) yet is adamant that he won’t go to any residential program. I need to make arrangements for him to go the Veterans Home but how do I get him to agree to go when the time comes?!?
My mom still thinks me and my son has stolei from her she says alot of things are missing and that we should feel ashamed of wanting to do this she thinks we do this to hurt her it me feel sad and upset that she feels this way I told her we would never do anything to harm her because we love her but she don't believe it l live with her but she won't let me clean the clutter so it's hard to find things when she misplace them so then she thinks we stoled them what can I do 😢
Wow this is so me. All three of these. I am so tired, exhausted I can't think at times. I get no sleep most of the time as my mom is up every hour or so to use the restroom. I feel J need to get up to help her as she uses a walker and is on oxygen. So I need to make sure she does not trip on the cord. I do put off my appointments for the mist part.
Interested in more caregiving tips and support? Check out our Care Course for in-depth guidance and a supportive community. Click here to learn more: careblazers.com/for-families/
After reading the comments, I am glad I was accepted for medicaid and my wife will rec care in a nursing home that loves her as much as I do. Yes,I take a financial hit but this is best course for the 4 children if I was to pass. I visit her daily with a loving heart and not isolation,frustration and guilt. Thank you, you saved this caregiver's life.
For me, care giving Sucks as I am not a caring person by nature. It's just how I am. However, the only way I can make caring for my husband with vascular dementia tolerable is to focus on what I am amazing at and that is "getting it done" when it comes to his meals, meds, scheduling his doctor's appointments, etc., I do not have to "feel" anything (which I don't) in order to do what only I can do, by the Grace of God. Yeah, sounds "hard core" but, it's the only way I can survive the "hell" that is for me, being a care giver. I don't need to "feel" anything, the joy for me is in the doing and the cool people I get to meet along the way. Oh, and by the way, Dr. Natali is one incredible lady both inside and out! Careblaze on, y'all!!
Yes, I've been like you but I found that if I do not allow time for myself, I get irritable with my LO So I take time to exercise and do some activity away from home that I enjoy.
We are who we are….you recognizing that, and adapting is a great example of a successful caregiver. We cannot give more than we have, but you’ve taken what you’ve been given and turned it into a tolerable life. Not a good life I know, and I hope you keep finding little pockets of joy.
Did I write this? ❤
Love is not a feeling, but an act of the will…
I relate greatly to what you wrote, with very similar strengths.
I’ve prayed for help, and I’m seeing answers to prayers.
In my situation, I’m looking for ways to improve my gentleness while also having a handicapped child who needs my time, and a house that I hadn’t made a home before my folks needed help desperately by 2018, when I had just purchased the two-bedroom house - and still had to do construction in 2023 for reasonable adaptations, after my dad moved in with me…
And it sucks even more when you have lost your home.
Great information! I have no doubt that my 86 year old mom will outlive me and am her caregiver 24/7. I have serious health issues, constantly having to cancel or reschedule my appointments because have no one to be with her and have tried so many times. It’s physically, mentally and emotionally exhausting
Thank you Dr. Natalie for this i feel like number 3 is definitely me ! I struggle with this . I cannot tell my 89 yr old mom with Alzeihmers when i go away for even a day she gets panicked . Even a few hours. I have to make something up. Taking care of myself and my health and my husband and my Mom all is overwhelming. I have to let alot of things go and that’s ok. I do feel guilty when my husband wants to go away for the weekend and it makes it extremely difficult to find someone to care for my mom so we just don’t go anywhere. Then he feels resentful. And it’s hard to find good reliable people. I have no sisters or brothers to help. My brother lives 10 hours away. The burden is all on me i feel bad even saying that. But this is not how I envisioned my 60s 😮! One day at a time .
Guilty of #3. I have to remind myself (daily) that This Is My Life. I don't get to push pause & then start life back up once my HWD passes away.
Recently my mom asked me how I wanted to celebrate my milestone birthday. My immediate response was to celebrate a different milestone when I become a widow. I told her the thought of figuring out what to do with my spouse during the celebration was way too much to even contemplate. I'm working to change that misguided mindset.
I feel the same way too. My husband is 25 years my senior. It’s been a tough journey. Trying desperately to keep him at home but it’s getting more and more challenging. I feel for you, but Happy Birthday!!!🎉❤
My health severely declined while taking care of my father. When I really needed help, my family couldn’t step in. After I was hospitalized, everything my dad and I owned of value was sold to put him in care. A lot of the time, we can’t take care of ourselves. There’s no full night’s sleep. There is no one to clean or cook.
Sounds like exactly what I’m going through with my mom
My 81 year old husband has been ill since March 2006. It changed my life completely. I have had to give up opportunities to travel or go on vacations. My entire life consists of cooking or foraging for food, washing clothes, washing dishes, emptying urinals, bagging feces, etc, etc, etc. I am so lonely that sometimes I wish that I would go to sleep at night and not awaken the next day. I wonder whether he will live another 20 years and will I still be doing this until I die. Right now, I have no joy in my life, and I’m so sad and depressed.
I’m so sorry you are struggling so😢 I’m praying for you this morning! 🙏 This is such a terrible disease!
If you haven’t already, consider joining Careblazers. The support is amazing.
I am in a similar situation, find a Government sponsored daycare program in your area, it will give you a break for atleast a few days a week.
I am so sorry to hear this. Please 🙏🏼 be brave and courageous, God is with you in all of this.
I care for my 89 yr. old Mom , its very difficult.
Got Bless you Jayne ❤
Thanks to Dr. Natalie I am doing better. I have fully endorsed all three lies and it was killing me. I watch over my mother in law who has never really liked me so I began my journey on a bad note. My MIL has always been reclusive and opinionated so even on a good day she didn’t want to go out around other people or have anyone in her house. She also has etched in stone beliefs about what foods she can eat. Vanilla ice cream is her largest portion of her diet. For Thanksgiving our little town delivers a full turkey dinner with all the fixings to shut ins. She is 83 and lives alone and was absolutely delighted by the horse and buggy delivery of her meal. She eats like a bird but she loved the turkey, dressing, green beans and pumpkin pie. She ate about half a plate and I helped her put the leftovers in the refrigerator. Next day when I arrived to help her reheat the food, I couldn’t find it in the refrigerator but did locate it all in the trash. She didn’t recognize it and forgot how it got there. In her mind it was not safe so she threw it out. I was used to her dumping food but it surely did pull at my heart to see dinner in the trash. But then I think…….there but for the grace of whoever go I and remember that I was able to enjoy my dinner and leftovers. Such an impossible disease to manage. Thanks to all you care blazers who keep me mostly on track!
As a caregiver for a company… I encourage my patients husband or wife to relax and take a nap when I come, to go out to lunch with friends and to never feel guilty to get more help when stress levels rise. Because if the caregiving family or spouse gets ill…. Both of you will need a caregiver. Take care of yourself too ❤
Controlling my thoughts is the key to surviving this difficult situation. Now I am getting control of my anger and other negative habits. It’s getting so much better now. Thank you so much.
I have been waiting for change 😢
My husband is in early stage dementia. I no longer feel I can go away overnight so no more solo visits to children which I really miss. I have been working on building in time away at home. I belong to an online writers group that focuses on short fiction. I email and phone friends ( speaker phone means I can chat while I do meal prep). I do crafts and garden and enter things in the local fair. I can knit while I talk with my husband and then feel I accomplished something when I have a new pair of socks. I watch UA-cam videos on travel so I can enjoy other countries from my home. I go to church and a Ladies group and if it gets to the point where I can't leave him for those times, I will hire someone to stay with him so I can keep going. I have hummingbird feeders because the birds are so pretty to watch. I try to make my home a pleasant space. I don't get any emotional support from my husband so I look for it elsewhere. I wouldn't care if he criticized the meal. I would know that I had prepared a healthy meal for him and that's what counts.
Thank you! My guilt level dropped during this video
I am focusing on giving my husband a better quality of life also by putting his needs ahead of my wants.
Dr. Natali thank you so much for your continued inspiration, education, and heartfelt support during these difficult and challenging times caring for a LOWD🙏🙏🙏
Number 3 - so important. Thanks for that.
Feel angry and sad when they don't like the meal. And then I started to understand that it's the dementia and I have to not take it to heart.
I feel like you are talking directly to me Dr Natali. I definitely have to stop believing those lies!! and take care of me
Please do!
We always ask each other in our care group how each of us how we are doing and what we we have done for ourselves each week so true how we forget to look after ourselves ❤
The Dementia Careblazers group has been so supportive. Also, Dr. Natali's Formula for Change has helped me so much in how I think about and handle situations. It takes some time and effort to understand how to work the formula, but it is worth it. Dr. Natali has other in-depth trainings on the formula, especially in her course. I have used the formula not just for caregiving, but for all other areas of my life. A big thank you to Dr. Natali! ❤
⭐⭐⭐⭐⭐ This video is packed with great information! I struggle with all three lies. I'll have to come back and listen again. Know that I have to be changing my thoughts that are dragging me down! LO is sleeping right now. That's when I can tune into and hear your videos. God bless you there are many stars in your crown!
Yes, self-neglect is real. A Texas-based dementia care channel shared their state's statistic: about 60% of dementia caregivers die before their loved one. This death rate went down only 5% for adult chidren caring for a parent. Chilling.
Dr Natalie, I cannot thank you enough for this video It was so timely!! I was going through his phase where I felt I was not doing enough for my LO and also that I needed to change things to make it better. Your video was so enlightening and took away the guilt I was feeling. Thank You so much Dr. Natalie for what you do.
Regina
How incredibly sad. My physician warned me if the same thing and it would be necessary for me to make changes. And that was the big question… what would happen to my husband if I died?
What would we do without you, Dr Natali?
Thank you for educating us, guiding us and supporting us through this journey.
Wow this is so me. All three of these. I am so tired, exhausted I can't think at times. I get no sleep most of the time as my mom is up every hour or so to use the restroom. I feel J need to get up to help her as she uses a walker and is on oxygen. So I need to make sure she does not trip on the cord. I do put off my appointments for the mist part.
Me too and exhausted!
Great advice today. Mahalo!I get frustrated I can’t keep my husband buisy and get all the chores ect done. My husband sits with his I pad all day if I don’t take him for a walk, and figure out something else. He has no motivation or stamina. Behavioral frontal temporal lobe dementia. Only 66 ys old. I’m figuring things out with time, and trying your good advice. Thanks again, blessings and Aloha🌺
This is amazing. I have just discovered your channel, thank you so much. Yes I am a caregiver and yes, believed all of these.
Welcome to the channel. So glad you found us.
Me too!
I would feel like my husband was just having a bad day and didn’t care for the meal he’s always enjoyed. Hard to hear as we do take things personally.❤
If my mom told me she didn't like the dinner. I would tell her that I would not make that dish again. I wouldn't take it personally.
Thank you. Yes, my health has suffered now. I'm trying some more care for myself and follow up better with my doctors. My mother has been hospitalized 5 times since March. I live with her and 24/7 care. I'm retired nurse. It's absolutely way to much. I'm 58 and I have been very concerned about making plans about when I'm sick ect. And things being in place for myself and children/ grandchildren. Anyway, it's very hard. She didn't want home care to come. ( to help me) and I sure did not want arguments to break out. My father, is hard of hearing and so it's double. Better sleep and my healthier eating has helped alot. Then, totally relieving stress as best I can. It's gotten a little better. Looking forward to my follow ups with my doctors. I have Leukemia and the stress did kick in on anemia. Then, some BP issues that I haven't had before. Went straight to my doctors when it started. Please 🙏 everyone really take care of your health and needs. Anyway you can do it. ❤ Love to all and thank you for your videos and teaching information. It's a blessing!
New subscriber & caregiver (agency & private in home care). 😊 enjoying your content.
One thought of “what if something (critical or fatal) happens to me”:
Do I already have a terminal diagnosis as my dad does?
If the answer is no, I need to maintain my health.
The challenge to keep doctor appointments for myself:
how do I find an honest aide, when my dad rejects all help from anyone but me?
I should add that my dad is home bound on hospice, and we barely get out to the yard IF the weather is close to or more than 70*.
Dragging him to my dental or other appointments during which his care is compromised by my unavailability is definitely NOT an option.
I’m figuring that this phase won’t last forever, and I’ll just get my personal de-stress time like this, on UA-cam or in the yard gardening as possible (with a baby monitor), for now.
Thank you.
🙏
I love your content.
I'm 56years old, first of the year my Mom moved to my house, me and my husband going through all these 3 lies because we love Mom, the way our life feels like its on hold, even if pay to get little help for trusted caregiver have no experience, but she is family member we get her for 3 days a week that is what we can afford, but she can stay with Mom for limited time that we can go out the house do what we need to do for shopping and other important stuff, the thing is we have no time for our life, it feels we need vocation time just to our self, I'm not sure how that will happened but we try and its the key word, we try to arrange some quality time for us considering Mom's safety. on the other
hand my concern if something happened to my Mom through my vocation, i will not forgive my self that i was far away from her, in her condition so far we can do limited things for her close places around the house .
Certainly number 3 is the hardest. There are times when I get low and overtired and react when I shouldn’t. I am human and do have lapses but I try not to punish me just pick myself up and carry on.
Thank you.
Excellent, thank you.
The loved ones isn't going to change, caregivers have to adapt and put their lives on hold.
Changing your thoughts changes your feelings. I’ve had it backwards my whole life.
Brilliant - thankyou!
There are so many of your tips that I would love to be able to do… and if it were just me and my partner (parkinsons and PDD which is getting worse very quickly), maybe I could. We also have two daughters.. 16 and the other almost 13. Youngest was diagnosed autistic at 6. Eldest was diagnosed autistic/adhd at 12. So both ASD/ADHD with PDA profiles. They are A LOT! And my eldest didn’t cope at all when she started high school. We tried for months, but I had to take her out. Ever since then she’s done high school from home online. So she is ALWAYS here with me too. Her younger sister attends high school but half the time she will refuse to go or there’s issues at school. And they both aren’t keeping up with any school work as it’s a demand on them and that doesn’t work with PDA 😢
So there’s that… then last year I was diagnosed with autism in march myself as well as CPTSD, BPD, MDD, dysthymia, adjustment disorder, anxiety disorder… (some of them we already knew) and then in December I was also diagnosed with ADHD. That one hit hard! But all of my own stuff makes it almost impossible to keep up with anything. Time blindness is a HUGE issue for me 😢 Constant demands from all three of them, (oh and I have a PDA profile too!) and most of the time feel like I’m losing my mind! I’m getting about 3 hrs sleep a night and have for months. Even when he is settled some nights, I have bad insomnia and sleep issues (ppl with ASD and adhd often do) and I have to get up early to do meds and the school run etc. I was hospitalised in June and have needed it again since, but I can no longer go to hospital and get well again and have a break. He has declined very fast in the last month or 2 so getting help for myself is not an option. We have no family or friends nearby who help. My mum lives an hour and half drive away… and she also has Parkinson’s. 😢 My partner is worse at this stage but I can see mum declining too.
Just… don’t even know how I’m supposed to do any of this! I don’t ever get to be by myself. So when people tell me I need self care and to take time out for me it makes laugh!! There is none!! Not everyone is that lucky! It’s been like this for years now. And it’s only getting worse. People have no clue how brutal this is!! I can hardly breathe!
Keep in mind, also, Safety and Happiness is a BALANCE. Please don't place safety above happiness. This is very much the common ideology in care homes. "We must keep them safe!" Keeping them safe is how the care homes used to justify tying them down to a wheel chair (and why ERs and hospitals still tie down dementia patients for weeks at a time). Dr. Atul Gawande wrote an EXCELLENT book on this called Being Mortal and it's currently being taught in medical schools. However, the mentality of most doctors, caregivers and nurses is still "Safety First!" I know my Loved One would have rather lived a MUCH shorter life with dementia than lived a long suffering one because we were all being so safe. Yes, take the keys and check book away when it's right. But put a tracker on them if they want to stay in their home... even if there are very hot summer days. Looking back my Loved One would have jumped at the chance to have a heat stroke and had this horrible disease over with fast... And been allowed to stay in his home until the end. So be careful about "Safety First" ideologies. (And as an aside, for the love of God, do not let any doctor talk you into anything that requires anesthesia!! If your loved one needs surgery or will die, even if it's in the early stages of dementia... It's a sad blessing and it's time to say goodbye.)
I’ve heard anesthesia can be bad for them, but the family and Drs will think I’m crazy not doing an important operation. I’m listening. I need to know this! So no colonoscopy ect? ( in your opinion)
Oops, ended up with other comments, sorry!
@@stacieboucher1570 Yes, I'd say the days of colonoscopies are over, for sure. Do you have a neurologist? They should back you up , especially if they specialize in dementia. If your GP insists or doesn't seem to understand, try to find a new, younger one. The younger ones, fresh from residency, get some training on end of life conditions and issues. But, yes, also to your point about family and medical systems not understanding how to stop prolonging life (even during advanced dementia, even with advanced directives clearly written, even with a POA who doesn't want to prolong life, even with a patient clearly suffering). We all hope we will find a caring medical system that will guide us through the process and advise us on when to stop prolonging ljfe. But, this is only going to happen when it is beyond, by many miserable years, the humane thing to do You have to protect them from this aspect of the system as best you can. IMO, when you get dementia, your best hope is that something else will take you out first. Sometimes, I think so many people think this is only a process of taking care of someone. But I think (my opinion) it's primarily a process of Letting Go of them. The sooner you (and your family) can do it, the better it is for them 😔 Search UA-cam for Being Mortal. They did a documentary on this.
@@stacieboucher1570 I want to tell you a story about what my Loved One's doctor told me about how he and his family handled his own father's death... It is very different than what he was telling his patients to do.
He was my Loved One's urologist and he was telling me I had to do a surgery. My loved one was in the early middle stage. After insisting, etc, he walked out and I chased after him, he turned to me in the hallway and he said, "I know what you are thinking. My family is one of all doctors and when my father was terminally ill, he needed this surgery too. But we knew the recovery would be a torture for him. SO, we decided not to get it. I am a urologist and I know how easy this surgery is but I still agreed with this decision. He died without having to go through it. See you next week for surgery!" And he hurried off.
One more thing to note. Just 40 years ago, the average lifespan with dementia was 4 or 5 years. It's now 10 years and growing. Doctors are getting better and better at prolonging life with disease. These aren't good years.
My husband just brought up tonight what would happen if I died, then I watched this video. I think he worries about it a lot. I told him I would write up some instructions for the kids to take care of for him.
I’m not sure if you meant this as a joke but I took the last sentence as being pretty darn funny 😂!
@@paulabirmingham5526I edited it for clarity.
I walked three miles home after dropping my car at the garage even though my mom offered to pick me up...she hasn't driven in almost a year...don't want her to drive. I needed the exercise anyways!!!
I have FTD and aphasia, are there any specific things on Me, that can be good and healthy for me and my caregiver.
TRY to ignore the comment. Remember that the meal was absolutely fine. So hard not to react. Try to let go.
😢😢im still in the angry stage.
Dear Dr Natalie,
I doubt that the situation with my LOWVD & PARKINSONS-PLUS is totally unique, but I want to share anyway!
For as long as I have known my wife, she has always had psychological issues and the old tranquilizers for treatment.
As time passed by so she became addicted to many prescription CNS drugs, especially those containing Codeine!
Now she is receiving treat for some 22 tablets a day which also affects her cognitive skills. So in short, I am having a struggle with my wife wanting to be knocked out all of the time or I'm the bad guy for not giving in to her!
I just went day to day
Hi, today is 3-3-2024. Also, my loved one may love something one day and hate it the next day.
I feel my survival action is to be more like a mother & him the child.
My husband with dementia is scared that I may die before him (I am 4yrs older) yet is adamant that he won’t go to any residential program. I need to make arrangements for him to go the Veterans Home but how do I get him to agree to go when the time comes?!?
About that meal…Hmm. Was my cooking that bad?
Lie #3, I get pissy!!!
My mom still thinks me and my son has stolei from her she says alot of things are missing and that we should feel ashamed of wanting to do this she thinks we do this to hurt her it me feel sad and upset that she feels this way I told her we would never do anything to harm her because we love her but she don't believe it l live with her but she won't let me clean the clutter so it's hard to find things when she misplace them so then she thinks we stoled them what can I do 😢
Sad
Adult day cares are wonderful
I thought so too, but all my LO does is go there and sleep! I can have someone sit home with him to do the same thing for much less mon ey!!
Mad Medicare helps so little
Frustrated
❤❤❤
sad
Unappreciated 😊
Edition. Edition. Edition. Not eddition.
Hurt
Wow this is so me. All three of these. I am so tired, exhausted I can't think at times. I get no sleep most of the time as my mom is up every hour or so to use the restroom. I feel J need to get up to help her as she uses a walker and is on oxygen. So I need to make sure she does not trip on the cord. I do put off my appointments for the mist part.