LIVING WITH DEMENTIA EP. 28 | A FOOT IN BOTH WORLDS
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- Опубліковано 29 жов 2023
- LIVING WITH DEMENTIA EP. 28 | A FOOT IN BOTH WORLDS. Today we are talking about the mid stages of dementia, where you have one foot in reality and the other is trapped in the dementia world. It can cause a lot of confusion and misunderstandings. Dementia is one big roller coaster ride, that's for sure!
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You’re giving us caregivers a feeling of not being alone. Nobody gets it until they deal with it daily. ❤
We can relate to things that are important to one person another person can just shake their heads at.
Take spending all that time, money and effort on decorating for holidays.
Man, I'd like to be in your head when you kill a turkey and kill a tree oh and ah over them then throw the bones out on the curb when it's over.
But hey, to each his own.
We're not talking about logic, we're talking about things we love to do, that bring us maybe a break from our everyday.
I was a caregiver. I've paid my dues.
I understand. It's tough but I saw the hurt in his face when you repeated the" in his brain" thing.
Yes, that is so right and it doesn't help us when someone visits with them and they are "showtiming" and the visitor then doesn't believe that there is anything wrong with them. Living with the situation is the only way to truly understand.
That’s for sure. I’ve been taking care of my mom, 86, Alzheimer’s for 5+ years without a single day off ever. It can be physically, mentally and emotionally exhausting and it is like a roller coaster. No one truly gets it unless they do it
@@torontokat54I go through this all the time with my mom
Amen...My mother has the frontal lobe type dementia....she is 82....I live with her...I am almost 60...it does take its toll on you as the caregiver...
I get your feelings at this stage and I’m also a RN and my strong handsome husband is in the same space and I’m reeling to get a grasp on the whole thing. My husband (who has an incredible memory and knows everything about finances) fixates on a particular thing(he’s in an out of confusion and I need to prompt and help him get to that place (that he was so great at). Activities of daily living have lessened and I need to “encouraged “ to shower shave etc and I’m sad for this vibrant man that he was. He’s gets by because of his great social skills just like Jason and to the outside world no one would suspect (other than the physical Parkinson’s) that there is dementia. The social skills get him through daily. It’s us caregivers that suffer quietly, gets angry and frustrated and wonder where that man went. Much love
We’ve been told that loss of sense of humor is a big turning point with dementia. Jason is still witty and can make you laugh💜
I applaud Jason for so easily discussing his issues and especially, realizing that controls are necessary for him in his journey.
I can't wait to spend time with you and Jason when we are all rejoicing together in the presence of our Lord. I think Jason will be so much fun to visit with -- his quick wit makes me smile. I feel such love and closeness to you as my sister and brother in Christ. Continuing to hold you close in my heart and in my prayers. 💙🙏🏻💙
Leslie every time I watch a video I tell myself I am not alone. You talk about things that I go through in silence. Thank you to you and Jason for the voice of this disease. I always thought the worse thing in the world would be when my loved one doesn't remember me but I was wrong. The worse is the journey getting to that point.
I’m with you.
And justifying to others is the most heartbreaking thing for us to deal with apart from the condition.
Your love for Jason is so so palpable!!! I worked in an Alzeheimers facility. Love is key. Warm hugs daily a must. Your journey is not an easy one beautiful lady. GOD hears your prayers and he will hold onto your Jason and you. Bless you both. Jason is so fortunate to have a family who is so willing to hold on to him! I love you both! Continued prayers dear heart ❤❤❤
The uncertainty has to be so grueling along with the anticipation of what each day will hold. As a fellow RN, Leslie, it reminds me of: at the start of each shift, what obstacles will be thrown at you? As much as you may think you’re prepared, something may arise.
Thank you for continuing to share your journey. Praying for peace.
Thank you! You hit the mail on the head with your analogy! ❤️
I cry when I think of all the mistakes I made when caring for my Mother. I appreciate how you’re such an open book and how much you are helping others. 😇
I loved Jason’s analogy using the muggle & wizarding world of Harry Potter to describe his current foothold in dementia. A lovely explanatory comparison from his own perspective. 💜
Yes!! ❤️
My heart goes out to you. I can see how much you have to walk on eggshells choosing everything you say carefully. You're an amazing lady. I hope you're doing okay too.
I know God blesses us caregivers. God has given me so many answered prayers the last several months. My biggest prayer was to have my husband pass peacefully . He answered me, and made losing my husband of 50 years a little easier. He was home and died in my arms. Couldn’t ask for more.
🙏💞😢
Sending a special hug to you, Cathy. What a precious gift you gave your husband - praying for you this evening.
I’m beyond that stage with my loved one. Just take a breath and hang on to it as long as you can. I know it’s rough, I remember. Plain and simple every stage sucks! The illness sucks! I’m just happy that Jason still has insight and can participate. I hope he can always communicate. My time with my loved one is one sided communication. It’s been that way well over a year and it was slipping for a couple years before that. I still talk even though it doesn’t seem to mean anything. Thanks for sharing.
I can tell you're a strong and caring caregiver. Hang in there for the bumps ahead. Life after this earthly one will be smooth and wonderful.
Keep talking. He hears you and he feels the love. Just remember, the person you love is still there, crying to be there with you.❤️❤️❤️
God bless you! I believe your husband hears you. I pray my loved ones will continue to talk to me if I lose my ability to respond. I'm confident they will ❤.
Their soul knows you're there and hears you! They love you for this ❤ God Bless
As a paid caregiver, i notice family members and friends visit the ĺoved one seldom or not at all. They must not want to see the decline, this is so sad because if visits help the patient to get even a tiny bit of connection to their life before dementia it is a blessing.
I'm glad that you addressed this phase. It's one that we hear little of & unless you've lived it, you have no idea about it. I remember my father-in-law, in a good moment, telling me that he felt like a child that was put in the corner for being bad. It made me sad.
It’s a roller coaster for sure. We have been trapped in the same moderate stage for many years. Last spring he had a setback that was so significant I actually went to check out facilities. It literally broke my heart to make that decision to go check out places. For some reason he improved and things got back to where they were before the setback. He has no real insight about his disease. He thinks he’s getting better. That makes it hard for me because I see the truth of the situation. There are bathroom issues which worsened during his setback and the exhaustion that caused me really put it in front of my face,but I deal with this alone. My husband has no desire to purchase things,drive or deal with any sort of what it takes to live and pay for things. The insight simply isn’t there. We are now approaching year 14. On and on it goes and the confusion never ceases. All we do is carry on day after day. I do what I have to do and give it up to the angels. I cannot control this and I accept that. I try to make every day calm and pleasant the best I possibly can. Best of luck to you both in dealing with this devastating disease.
Your journey sounds heartbreaking. I know what it is like to feel burnt out from caregiving with no hope, and to feel guilty and sad thinking about the end. Are there any day programs in your area? Or friends or family to give you a break? I know care facilities are a help, but are also a different kind of hard. I appreciated the breaks I got, but I still had to pitch in and be vigilant to a degree that I was not prepared for. You both matter, and one day at a time, you will know when /if the time is right. Sending you good thoughts. 💜
I am so very sorry for what you are going through. I hope there is someone in your life that can give you a little bit of help and reprieve.
Wish I could give you a big hug. Sounds like you could really use one. 🙏👍🙏👍🙏
Wow! Just Wow!
I am only in year 9 and I am starting to understand why so many of us die before the patient.
Nine years is such a long time! A long time for you to be lonely and exhausted. A long time to grieve and struggle. A long time to be frustrated and worried. I hope you can come to terms with the emotions of letting go of the life you no longer have, and find small moments of joy in your days. I know first hand that it is not easy. What you do for your loved one is a gift that any of us would appreciate. Bless you. @@SamaandBuddy
Thank you so much. Every journey is different; my husband is still at the beginning, but it really helps to know what may (or may not) be coming. I know it costs you and Jason to do this, but let me tell you... It is extremely valuable of us that join you on the road. God bless you; this time, while it seems difficult is a minor blimp on eternity with Jesus!!
I know we don't see the bad side of Jason's issues, but I know your struggle is real. Jason always seems to be a generally happy guy, who is doing his best to navigate this journey. But ,with you by his side,I am positive everything to make his life as easy and comfortable as possible will be done. Watching the way you love him ,reminds me of the 1957 song by Bobby Helms "You Are My Special Angel" . I can almost see you two dancing in your living room to this song. Just the thought makes me cry. Listen to it... by yourself first.
The gift card idea is fantastic. It's lovely that Jason still has that freedom, but in the confines of a budget.
Thank you Jason for visiting with us. Leslie you and Jason are always in my prayers. I’m old enough to be your mother and that’s how I relate . I’m a mother hen who wants all her kids to be happy, healthy and safe. Praying for more good days than bad , more smiles than tears. Love you both my friend ❤❤❤🙏🙏🙏🙏
Leslie we had a situation the other day that blew my mind .I lit a candle and placed it on my desk for a person who is very sick.My husband came by later and said I was trying to burn the house down and proceeded to put the candle out .Later as I was moving around in the kitchen I noticed some white stuff down in the sink.He had poured the hot candle wax out into the sink and it had run down the pipe .I pulled out as much as I. Outdoor and then ran hot water down thru the pipe .This was very frustrating and I asked him why .He didn’t know why and didn’t remember doing it .This is an example of things that I deal with every day and he refuses to take any meds for the situation .
Leslie you come across as such a gracious person. Jason is so blessed to have you caring for him every step of the way ❤. And I know you have been blessed by him so many years too. May God continue to give you the needed grace and strength.
My mum was in her bedroom one day and she said to me "I think I'm losing my mind". It broke my heart as I already knew she was, but she wouldn't let me take her to the doctor. Hugs to you and Jason. (My mum passed away in January 2020 from dementia)
I am sorry for your loss. My mom passed in March 2020, also from dementia. Towards the end, my mom would get really mad at herself and say how stupid she was. It would also break my heart. Sending you love & light❤✨
Empathy hugs to you both
My Mama passed April 2019 after about 29 years with dementia. It's tough!!!!
I spent hours reassuring my late partner that he didn't have to worry about anything, I was there to take care of him and barring my death I'd be there for as long as he needed me to be. For three years he realized I was his rock, the last two years I lost a bit of him every day until he didn't realize who I was, but he'd tell his sister that he had a woman who came in to take care of him. I don't know if he knew who his sister was, but he knew she loved him and that was enough. The one person he always remembered was my brother-in-law, he'd call him by name when he didn't call me by my name. The anniversary of his passing was a couple of day ago, I still miss him.
Our latest fixation is the bank closing in town. What great insight Jason. I know it’s a very demanding mentally for these chats but I really appreciate them. My mum is in mid stage Alzheimer’s but she’s 83 but my brother (60) has early onset so I’m experiencing both types. It just sucks. That’s all I can say. Sucks so bad
You have a big challenge, caring for two at once. I hope you have a big support group of friends and family that you can have some breaks with. xo
What can we do but encourage one another. The many emotions we have to bury to try and carry in the burden of care , it is aLot.
Even the comment section of this channel is doing good.
What a great couple these two are
These posts are such a gift! Thank you for so beautifully articulating what so many of us are going through. Your honest heart and transparency lighten the load. EVERY stage of dementia is challenging in its own way, but I always invite God to help me carry this unique burden. I absolutely cannot do this without heavenly help. 🙏🏼🙏🏼🙏🏼
My hubby doesn't have dementia however, after sustaining a traumatic brain injury with skull loss, he has some of same 1/2 and 1/2 symptoms you both describe. At times I would get confused at his odd reasoning and then bam, things would be fairly normal. It definitely is a roller coaster some times- so thank you for both of you and your honesty in your journey. Ours may not be exactly the same but we love both the guy that was and the one that is now. Many blessings to you family.
Thank you so much for sharing this. I'm in this situation myself. People think that dementia only has one stage...the end stage. We are in the early stages and there are times when my husband seems to be aware and able and then boom he isn't. His behavior is so subtle at this point that unless you live with us 24/7 and interact with him consistently you might not realize the truth. Thank you for your videos. You have helped me so much.
Same situation here. Little, subtle changes that go unnoticed unless you live with someone. Confusion with things he used to know how to perform, difficulty following tv program, etc. Won't go for dx because his mom had dementia and rx didn't help her. Reckon he's right....Soldier on!
‘Roller coaster’. Truly a dementia roller coaster of emotions. It’s awful.💔
You are an amazing woman. It’s so special and courageous of you and Jason to share your story with us. I cannot imagine the stress you are under, so I pray for you both. It’s so amazing that Jason is willing to talk to us. Both of you sharing to the public has to be helping many people in this situation. I’m sending you loving hugs and well wishes. Judy
I have good friend who describes it as Swiss cheese. Sometimes they are on the cheese and sometimes they are in the hole! Perfect way to describe it.
I missed you two, and I hope he continues to want to share with us.
Blessings to you both…..
My husband is at the same stage with vascular dementia. and I can relate so well. After 9 years since the 3 strokes I am exhausted beyond belief. And the VA still thinks I don't qualify for respite care. I am so glad you have family to help you. All the best to both of you!
Without someone to help,is the most overwhelming feeling of all. I had no family that would help me. Try to find moments to rest your mind and soul. I’ll keep you in my prayers 🙏🙏🙏
I am sorry to hear that you are understandably so burnt out. People in offices with pens should not be making decisions over people with lived experience! I hope you get your respite care soon.
@@cathythomas298And even with family , unless they have had experience of illness that doesn’t recover they help at the begin and then ent husband commitment wanes😢.
Sending hugs in any case, we need them too❤
@@cathythomas298 not a single day off for me either in over five years, so exhausted
Thank you for being so transparent. I lost my father n law to Alzheimer’s dementia, my mother n law to cardiac arrest, and my Stepfather to ALS all in the last 5 years. I currently care for my mother who has vascular dementia and work full time from home. It is so helpful to hear we are all in it together.❤
Leslie, hang in there girl. I see you and I feel you. Just know, that we know the struggle is real. But, if God puts you to it, God will get you through it.
I have Parkinsonism and Dementia with Lewy Bodies. I am losing my self-awareness of when I my reasoning is "logically illogical", so I understand completely what Jason is saying. My brain fuzzies don't necessarily occur simultaneously with my illogical, irrational, delusional or compulsive thinking/behaviors. Some days, its just hard to think - period. I call those my foggy or fuzzy days. I rarely realize when my thinking is illogical now. I usually catch on though when my family asks me a question about why I've done or said something. Its only then that I am at a loss because I cannot explain why my previous logic seemed so spot on. This is so frustrating, especially because I have always been a very sharp, articulate person 😔. Hugs to you both 💚. I love both of your channels! Keep up the GREAT work!
Hi from another Lewy person. I know what frustration is, I could scream at times.
@@Tatia146 Hi! Don't we "know" each other from the FB LBD Roller Coaster group?
@@miriamowens2491 yes we do! I thought your name sounded familiar. ❤️
I’m so sorry this is happening to you.
@@susanburnett6123 thank you! I still have a lot of life to live so I am doing it 🤗!
What Jason explains is exactly what I experience with my father. There is no logic and no comprehension of the situation that he is in. His cognitive abilities have exited the room. It is a very difficult reality for me as the caregiver because my father doesn't even accept his diagnosis and thinks that there is nothing wrong with him. It is sad and it is frustrating and difficult to deal with.
Y’all are so brave to be sharing this!!
I still prefer to have some moments of reality... oh how much do I cherish these short windows of logic and reason, when I see my beloved's personality shine through... he's my sunshine regardless...
Cutest couple winners. ❤. Thank you for taking us on a journey you didn’t expect or choose. With God’s help you can do all things. Hugs.
I truly appreciate you both using this channel to inform others on the true realities of living with and caring for someone with dementia. My mom suffered with dementia before she left us and it was one of the toughest things we had ever gone through. But I will tell you that now - three years later looking back on that time with her, we made some of the most precious memories ever and I am so happy to have those to think back on now on the days when I am missing her the most. No one knows till they go through it exactly how it is. You channel gives a glimpse into that and I am sure there are people out there who appreciate your transparency. Also - I just want to congratulate you both on the true love you show for each other. You may not say it in words, but the way you talk to each other and the way you look at each other truly shows how deep your love for one another is. That is rare to see these days but so precious and inspiring! We are continuing to keep you both in our prayers! Hugs and positive thoughts and prayer from TN!❤😊
My husband is kind of in that stage, half in and half out of things. He has no clue he has dementia. He is on medication now and it seems to have leveled him off. He is fixated with blowing leaves off the driveway, does it several times a day. Every day is an adventure. Just hope we have more good days. Thank you for sharing🙏🙏
You are both so wonderful. Right now you can't see it but you are helping so many people who struggle with no one to talk to about this.
My husband's fixation has been our side lawn hedge. He has trimmed it since the Spring. I have bundles of branches all over my lawn. One load went to the dump but there are still mountains. I keep asking him why he is doing it and he said he enjoys it. He comes in exhausted and confused. It has been worrying me a lot but his specialist said it makes him feel useful and busy. So I just keep an eye on him and pray he doesn't get hurt. I have no issues usually with him spending except he wanted to buy a lawn tractor , he already has one that he can't remember how to drive. I couldn't deny him. He was so happy. So we are proud owners of two lawn tractors. Leslie everything you said in this video is exactly where we are now too. I never know if he is grasping what I am saying or if he is off somewhere else. This has been the most difficult thing I have ever experienced, a rollercoaster is exactly what it is. Keep praying for you all!
two lawn tractors ... I can sooo relate to doing what makes them feel accomplished ... like putting up a Christmas tree in March. Also, every day he would fill a bucket with rocks from the rock garden, wash them. then put them back. We had the cleanest rocks in the neighborhood!
@@l.obrien8341 Aww
I went thru this with my mom she passed in March of 2022 with Dementia. No one understand ever until they walk that road. God Bless you and while it can be frustrating enjoy every moment you have because when they don't know you there is such a longing for just one glimmer of something that used to be them. I miss my mom a lot and while it was hard it was the most humbling experience I have ever had.....
I only Hope I could be half the Wife you have been to Jason during these times. I think you're doing an amazing Job! Hats off to you!!!
My frustration is my own anticipation of how bad things are going to get with my husband. He's still having more good days than bad which is wonderful. I am slowly learning to not sweat the small stuff, to not dwell on our small disagreements letting him win more than I used to because life is getting shorter, and trying my hardest not to get on at his grown kids when they pick on him for forgetting things when all I want to say is "leave him alone, he's got dementia!". I know they know, it's just they don't live with him, see him go through the frustrations every day and don't have that urge to want to protect him from everything. They care about him too, it just sometimes feels like I'm going through my own struggles alone because they deal with it all a different, probably easier, way.
So glad you and Jason are back. I miss you and Jason, but I understand you and Jason are going through a rough time . I think of you both often and always say short prayers when thoughts of you both come into my thoughts. I can’t help myself and don’t want to seam that I am not sympathetic to your hard issue but Jason, cracks me up. Hopefully the laughter helps the stressful times. 💕Marilyn from Michigan.
Thank you for the update video. It’s always good to see his cute smiling face and the love between you two. I know it’s so hard to see him changing. You’re in my prayers.
I think the worst heartbreaker is the day they look at you and ask who you are....
Jason, I know it seems to me that it is so uncomfortable to talk about a lot of this. I am grateful that you do. It is hard for us to know how our loved ones are feeling and you have helped in so many ways that you probably do not even understand. What you have done by opening up has given a gift us a little bit of understanding. I love your personality and I know you are still you. Your audience loves you for you. I appreciate even the videos of the rawness of how you are feeling when those are posted as well. These videos will give Leslie many hours of having you back when life gets super rough, I know she will watch these videos and know why she feel in love with you. 😊
Jason, so many people out here adore you! You’re so smart and so funny. It’s obvious to me that you are an amazing man. Thank you from the bottom of my heart for being willing to share your journey with us. You are both in my daily thoughts and prayers. I always look forward to hearing from you! ❤️🤗🙏🏼 Leslie, if I lived near you I would do absolutely anything for you! May God continue to Bless you both!
Thank you, Leslie & Jason, for creating these videos. I’m sure they are difficult to produce and edit, but you are helping so many of us understand this affliction and how to best help our own loved ones.
Oh honey! I understand! Interesting that he can even navigate purchasing things! Everyday is a new day! ❤️
I understand exactly where you are on your journey. Not easy.
Oh my goodness, YES to everything you said! Especially the one foot in, one out. That is where we are at with my MIL that is living with us. One day she's got it all figured out, next day, nothing works or can understand what to do. Thank you for the videos. ❤
Wow. I’ve only listened for under 5 mins & you’ve described everything I’m going through😮. I’ve asked some of these so-called social media experts, who roll out tons of videos, to please please focus more on the middle stages, yet I never get a response. I realized the middle is so hard that no one wants to talk about it. It’s a constant guessing game, day to day, minute to minute, what reality are we in? God bless you both for sharing ❤🙏🏻
Happy to see Jason! My former boss, my sister and a good friends husband are unfortunately all experiencing a different level of dementia. I watch over my sister who is still able to take care of herself with home care. I sit with my former boss 2 days a week so her husband can do errands, etc. She is in control during the day but nights are very difficult. My friends husband is in his early 50's. He unfortunately not able to drive any longer. Thanks for keeping us updated! ♥️🙂
❤️ 💙 💜 💖 💗 💘 ❤️ 💙 💜 praying for peace and comfort for you both. 🙏
You two both demonstrate the love of Jesus by sharing your story with brutal honesty. And you’ve also shown us how to love in His strength and not your own. We recently moved to a new, small neighborhood where one resident has LBD. I go out of my way to speak with him and his family. You’ve helped me understand the disease process while also remembering the person and family facing this every minute. Praying for you and your family and those watching and affected.
That gift card idea is awesome! So glad it's working for you guys. xo
Leslie, thank you for continuing to be brave enough to let us in and to share your journey with us. You will never know how much you have helped others… Your impact is tremendous… Never forget that. ♥️
My husband gets fixated also. It’s so frustrating. He also has had problems with the jerking getting worse. Like Jason, he just gets thru it, accepts it as part of Lewy, and just keeps going. It is affecting his walking because it knocks him off balance. I appreciate Jason’s personality. He seems to try to stay positive. Reminds me of my guy. Love and prayers for you both.
Leslie you put into words exactly what I felt when one minute my husband seemed normal, next minute he wasn’t. I went though this journey for 10 years til he passed 2 years ago. Thank you again for this wonderful thing you and Jason are doing to help both Caregivers and their loved ones. Also love your other channel of uplifting decor, cooking etc. Happy Thanksgiving🦃💕
No matter how much experience one may have, it is always difficult because it is always different. However, being in a support group and listening to each other's situation is helpful to stay safe, alert and when to take time for yourselves as caregivers.
Leslie, thank you for the love, and for caring enough to take this time to reach out to others.
My prayers are with you and Jason in this painful and exhausting journey. God bless.
ILOVEYOUTWO! Was that too loud! Thank you for sharing your lives with us. Praying God's grace and provision for You and Family............Continued Blessings!!!
🙏 my partner is now stage 5 parkinson and dementia . Thank you so much for what you do .
Be still my heart. With all he has going on he still can promote your craft channel. 🥰
Just signing in today, Sunday at 2:50 pm. We've been on vacation, (to Sandals, Montego Bay...) so my YT watching is all out of whack! Looking forward to catching up!
I am one of the caregivers for my mother in law and I just found your channel…I am so thankful to have found you. We are at the part that we have stepped over the threshold- it is only the dementia world mostly now…it is so hard but also still so evident that God’s Grace is Enough and there will be more for tomorrow when we need it even more…
I love you guys! Love the updates!!
So good to see you!❤
Thank you for the update! Great job Jason
Nice to see you guys again!
Thank you. We love to see you.
It’s always great to see you both❤️
Thanks for sharing your journey with us!
Sending you so much love!! Both of you!!
Thank you for this up date. God Bless
Great analogy Jason!
Hugs!
Appreciate both of your vulnerability with us.
Danya
You two are the best!
Thank you for sharing. Hugs to you & Jason.
Thank you, Jason! Prayers for you both. 💖
Thank you for being so brave and thoughtful in your sharing. My beloved husband’s decline was agonizing and incredibly sad. He was the most intelligent, caring, funny, loving man. But at the end he was angry, scared, combative, and utterly lost. I am so blessed to have had him as my husband and best friend and to have been holding his hand when he passed. May you continue to ask for the loving support you need and know you are not alone in those darkest moments and we are holding you dear.
Bless your heart Leslie. My MIL was like a box of chocolates. I never knew what I would get when I came to take care of her. Moderate stage is so fluid it can change on a dime. I feel like I lived in reactionary mode. I can’t imagine caring for a spouse. Praying for you 💕
Your videos are incredible! Actually, both of you are incredible. You consistently smile and laugh even as you're discussing things that have to be so painful. I have to remind myself of the overall sadness of your situation. You're both a source of joy and education for more people than you probably even realize. Thank you!
Oh my gosh, how well I remember this roller coaster..... prayers.....
I felt this when I needed to go to the store.... knowing I needed to get us groceries... but would he be okay to be left alone for an hour...
Then I would come home and find him lying on the floor... Dementia is such a cruel disease.
Thanks so much for the update. Is great to see your both hanging in their. We appreciate seeing both of you. And happy holidays. 😊 ❤
Well said. The awkward stage of still being somewhat independent but not totally responsible presents it's unique challenges for a caregiver, and can be distressing to the person with dementia. As the caregiver for my husband, I find it to be a bit like parenting a headstrong teenager. The next stage, as I went through it with my mom, was more like having a willful toddler.
My mom's shopping habits in the early days were way out of control. New clothes, home decor, eating out, gifts... Not large purchases, but so many things that no one needed, they really added up. I found her worst symptoms were often an exaggeration of her normal traits. She always used to loved to shop, give gifts, and have a nice meal, but in moderation.
Later her own body image issues turned into insulting people around her (fat shaming). Her strong independence became defiance. Her tendency toward anxiety became paranoia. Her desire to help others made her bossy and intrusive. It was always helpful to know where she was coming from so I could redirect her more successfully with consideration for her 'original' intention /state of mind.
My husband was very intelligent and held a very responsible position of authority. Now he functions well (if quirky) in some people's eyes, but we who are closest see a huge change in reasoning, prioritizing, task completion, reading the room, and emotional management - to name a few. This, on top of the memory issues makes daily life tricky. We have a number of strategies that we employ, but it is exhausting and frustrating for both of us at times.
For the fixations - would a shift in the environment help? I am imagining a ride in the car to get out of the house, or playing favourite music at top volume and dancing around and singing, or having an important time sensitive task to do - 'I really need you to... set the table, help me change the bed, make some cookies...'
No matter what, I do think your positive attitude, sense of humour and openness will be helpful for you both on your journey. xo
I think this phase is the worst. I call it ‘silos’. When by dad stays in a silo, he’s normal but then he jumps to another. Compassionate lying is my best friend.
So helpful to hear Jason's perspective. Thank you both!💕🙏🙏🙏
You and Jason are a blessing. May God richly bless you.
Thank you so much for sharing❤
You are so very helpful. Thank you and God Bless you both! ❤
TY for sharing this. I totally understand what you are saying. My husband had a stroke 4 years ago, which I believe has affected him cognitively. Sometimes he's in reality and sometimes he's not. So I want to be able to have a healthy discussion or even what would be a normal argument, or get him to admit that he is mistaken about something, but then I realize that he is not able to.
Thank you!!! You are both soo loved❣️❣️❣️ Daily prayers🙏🙏🙏🙏🙏
You are both doing an excellent job. God is with you both, always.
After I listened to this I shared with my husband as I always do. It gives us both some sense of peace knowing we’re not alone. Thanks you both! Love and prayers
You guys are so cute! Inspiring in your honesty and willingness to share.
Thank you so much for this video. Always waiting for the shoe to drop, the sadness is overwhelming ❤️
Wow, this is a great video! My life with my much loved husband sounds a lot like this, he did have one foot in both worlds, reality and his fuzzy world. His spending was an issue, you folks solved it very well. We lived in love every single day and every day was a good day! And I always treated myself so I felt special too. This is important. I miss him so much, our love deepened and it was mostly a joy to take care of him. Lots of laughs. Thank you for this video! I dislike the "101 signs of dementia " videos! This should stop, serves no purpose.