1. < Caregivers: Dementia

Everyday Becomes More Difficult

Posted by bernie8841 @bernie8841, Apr 5 12:36pm

We have been snow birds for over 13 years…have been married 53 years. Over the past few years I and my family have noticed some changes in him. Well, this year we did not make it back home to New York. Thankfully we are where my children live. He suddenly got worse and quickly. There was no way we were driving back ever. Our house was sold and cars also that were in New York. We were able to get him to a Neurologist, but that was difficult. That was last May. He has had CAT scan, EEG, MRI and extensive blood work. We see the doctor next month for more testing to see how the progression is. The really hard part is that he has no idea that he has a disease. He hasn’t driven since last May, but continues to fight me on “why he isn’t driving”. He has no idea that his house & car have been sold, and keeps saying he wants to go home. I am running out of excuses to give him. He doesn’t know who I am or his kids and grandkids….asks me if I have seen the other people here (only us here). This is becoming too hard for me to manage. He should be in Memory Care, but the guilt I feel is terrible. Can someone shed some light on my story? This is my first time posting…sorry it is so long. I’m just falling apart, this is so difficult. Thank you.

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casj | @casj | Apr 5 2:34pm

Dear Bernie 8841,
Your story is similar to my own, but your husband's progression has been much more rapid. My husband was showing symptoms ten years ago. Five years ago he was diagnosed with MCI but was already having trouble remembering his meds or even remembering to drink or eat while I was at work all day. I retired earlier than planned, which was a financial hit, and we moved to another state to lower expenses and be near family.
I sympathize with how you must be missing your home and your friends and your plans for your retirement years. And missing the man you married! I don't think my husband remembers exactly who I am. One day he asked if I would be his husband. I said sure, and called my mom to tell her I had a proposal! Like you, we've been married more than 50 years.
He gets confused, bored, stressed, and agitated. I spend all day every day watching over him because he wanders off or gets into mischief. He doesn't drive, but his main interest continues to be cars and he thinks he needs to find one to buy so he can drive. He thinks the neighbors' cars are all for sale and looks in the windows and tries the doors.
A year ago we moved in with our son's family. My husband doesn't really remember who they are, but thinks they're nice. He gets extremely upset if I'm not with him, so even though there are others in the house, including three teens, I can't leave him with anyone. I'd love to travel to see my mother, who is 96, but my daughter -in-law thinks he'd have a psychotic break. I guess I'll stick it out as long as possible.
It definitely helps to have people with whom I can share and laugh.
I think that if I were living with just my husband and could afford to place him in memory care, at this point I would probably do that. It is just too much to handle.
I wish for you hope and love and peace. You can do only as much as you can. Let go of the rest.

REPLY
1 reply
bernie8841 | @bernie8841 | Apr 5 9:17pm
In reply to @casj "Dear Bernie 8841, Your story is similar to my own, but your husband's progression has been..." + (show)
@casj

Dear Bernie 8841,
Your story is similar to my own, but your husband's progression has been much more rapid. My husband was showing symptoms ten years ago. Five years ago he was diagnosed with MCI but was already having trouble remembering his meds or even remembering to drink or eat while I was at work all day. I retired earlier than planned, which was a financial hit, and we moved to another state to lower expenses and be near family.
I sympathize with how you must be missing your home and your friends and your plans for your retirement years. And missing the man you married! I don't think my husband remembers exactly who I am. One day he asked if I would be his husband. I said sure, and called my mom to tell her I had a proposal! Like you, we've been married more than 50 years.
He gets confused, bored, stressed, and agitated. I spend all day every day watching over him because he wanders off or gets into mischief. He doesn't drive, but his main interest continues to be cars and he thinks he needs to find one to buy so he can drive. He thinks the neighbors' cars are all for sale and looks in the windows and tries the doors.
A year ago we moved in with our son's family. My husband doesn't really remember who they are, but thinks they're nice. He gets extremely upset if I'm not with him, so even though there are others in the house, including three teens, I can't leave him with anyone. I'd love to travel to see my mother, who is 96, but my daughter -in-law thinks he'd have a psychotic break. I guess I'll stick it out as long as possible.
It definitely helps to have people with whom I can share and laugh.
I think that if I were living with just my husband and could afford to place him in memory care, at this point I would probably do that. It is just too much to handle.
I wish for you hope and love and peace. You can do only as much as you can. Let go of the rest.

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It truly is comforting knowing that there are other care givers in the same situation. It is a heavy load to bear. Our stories are similar. So far he hasn’t wandered, but with this disease it’s just a matter of time. Thank you so much for sharing with me…I really appreciate you taking the time. Hang in there, I know we are doing the best we can. 💕

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boppi | @boppi | Apr 6 8:12am

Oh, dear lady, I am sending you a beautifully woven blanket of support to wrap around your arms in the big hug you deserve and am praying that it keeps your bleeding heart and soul warm with the love of all us caregivers traveling this pit fallen road of grief! You have the strength of Giants to have done all you have in such a short period of time and you need some well deserved respite to breathe deeply to care for yourself as well as carryon as is best for you both.
Everyone on this site is on your side and we are here to help, listen, advise, and cry with you! Vent all you want!!!
I sometimes wonder how I can do this much longer and then I just seem to go on. I have a trusted social worker with whom to talk occasionally and let out all my emotions and worst fears. I seem to feel better after letting it all out to someone who will never relate those thoughts back to a family member…I should go more often☺️.
Last week, my husband and I went to tour a three stage retirement community where we could both move just to get him used to the idea. It was not what we wanted for me but it was a start at orientation for him to move. Many of us have made this heartbreaking decision and as hard as it seems, it is a relief to be able to care for yourself alone and visit your loved one OFTEN, with only loving attention instead of duty. Have hope!!! Do not dwell in misery and drown! Stay in touch here and look differently toward a happy future however you proceed because you deserve it❤️

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bayviewgal | @bayviewgal | Apr 7 12:04pm

@bernie88 I felt like reading your story was me reading my story with my husband who was diagnosed in 2021 with alz caused by dementia. And I thought there was no way that could be right, because he's only 64. This awful disease sure doesn't discriminate. I did as much reading as I could about everything related to alz and thought I can handle this no problem, because it was just him being forgetful and not remembering things from time to time, but boy was I wrong about that after I started researching dementia, and this disease really woke me up and knew my life was going to take on a drastic change. I won't say it hasn't presented many challenges because it has and those challenges make me take a deep breath, step back, and continue loving Tom even if he isn't the same person, because he ISN"T the same.
Does he see a neurologist on a regular basis? We see an Alzheimers Neurologist and I love her. This disease has SOOOO many unknowns but the advise on how to handle certain situations along with meds she gives has been a tremendous help. And i'm always documenting things about his behaviors like hallucinations, sleeping patterns/behaviors, appetite, etc so when we see her, she can do her best with how to handle his distresses and move forward. Sometimes it works and sometimes we need to take a different route. I feel his progression has declined fast as well but maybe its just the nature of the beast. My biggest challenge is his aphasia and it will never get better so we use alot of gestures and do the best we can.
The one piece of advise I can offer is to get involved in support groups to share and listen to others' experiences, trials and tribulations, what works, what should be avoided,, etc. It took my a couple years to get involved, (better late than never), but I am so glad I did because they have been an enormous help and my challenges has been easier to accept and deal with.
I know how hard all of what you're going thru has been but just keep remembering that he isn't the same person, don't take things personal, and that there WILL be moments of lucidity (and you will feel all warm inside when it does) and keep loving him because he IS "in there" .
I wish you much strength, love and hugs

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robertwills | @robertwills | Apr 7 12:47pm

Your story is unfortunately very common. It's difficult for everyone going through dementia with a loved one. It's one of the worst times, if not the worst, in anyone's life. I dreaded assisted living (memory care) but when there was no choice other than 24/7 care they had to go. Within a week I discovered just how wrong I was about assisted living. It was the best for everyone. The quality of life for everyone greatly improved. In my case it seemed to defy the reality of the situation. Dementia is progressive but in my case I have seen it also go back the other way, for a significant time, with the right medication and professional care.

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