Losing Loved Ones to Dementia

Had three cousins taken by Alzheimer's ; my older sisters calls weekly asks "Have you eaten yet?" That is all she says, when I answer her question, she hangs up,
We used to have long enjoyable phone conversations; I miss them.

I used to be a great reader, a poor week if I did not read at least, one book. I'm losing the ability to read a novel, have many college textbook for
202 Lit, lots of short stories, poems...I can read those without difficult (so far).

My brain is a time bomb, I know it's inevitable.
It appears to be a race between my physiological vs. cognition
( a joke I suppose, if I lose my ability to think, remember...will I know it?)
I've been in a lot of nursing homes, I certainly don't want to be in one as a resident.
I've been looking for an assisted living center, haven't found one I can afford.
Your not aware when full blown dementia has taken over; you are aware when the process is active

A scary time...Doc says learn a language, take a trip...so do the articles I've read.
This web site. with it's diverse topics is healthy behavior.
I have one friend, damn it is getting embarrassing to continue to go visit him. He is still working for a living; I feel like a haunt, showing up all the time.
 

My cousin called last night to tell me that my dear 94-year-old aunt is in the hospital right now and being transferred to a home tomorrow. She's been suffering from dementia for a long while but he was still able to care for her at home but he said that she declined in a matter of hours to a point where she was kicking, screaming, spitting, biting, and using foul words he had no idea she'd ever heard much less ever used. Up until then, she'd always been a very proper lady.

The last time I went to see her was last summer because they live four hours south of where I live, and I can no longer make that drive in the very busy interstate traffic, six lanes for most of it. Once off the interstate, it's two-lane rural roads for another 20 miles.

He assured me that it really doesn't matter because she often doesn't recognize him, and if he mentions me, the response is "I don't know who you are talking about."

The only way I can cope with this is to remember her the way she was all my life, a loving aunt. We were very close and except for my cousin, the last link to my mother's side of the family.
 
Linda said:
I felt so sorry for my MIL before she passed. When she was moved out of her bedroom ,at her daughter's ,to a care facility there were notes hidden all over her room. They said "My name is Cowetta *****". She had known for years her memory was getting worse and worse but I guess she always hoped she'd find a note to tell her what her name was. It makes me get tears in my eyes to think about it.
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It does bring tears to your eves. After mum passed while cleaning out her house I found note books filled with pages of the alphabet she practiced as her skills began to leave her. I did spend a lot of time with her, but I somehow now have a feeling of guilt that i did not spend more time with her as she was very lonely after dad passed. :(
 

Daddy Elf hasn't gotten as bad as he will be getting as his advances. He was diagnosed with mild Alzheimer's about 7 years ago. Now he's at the stage where he forgets most things and has a hard time expressing himself. When my mother was in the hospital last month he kept asking me to take him to the jail to get my mother out. And he wanted to know if I had any idea what it would cost to get her out because he didn't have any money. I would tell him that she's in the hospital and we can't be there any earlier than 8:00 which was visiting hours for ICU. "Oh. I knew that. Don't know what I was thinking". Then 30 minutes later, "What time do we have to be at the jail?", or, "When will your mother be back from the store?". He has not mentioned my brother's name since my brother died in December. My sister died in August and he hasn't mentioned her name and doesn't ask where she is. If you mention his only living sibling, he doesn't know who she is or can't place her. I don't think he remembers my name most of the time but I know he feels he can depend on me to take care of him.

One thing that's frustrating is he constantly is thanking me for pouring him a cup of coffee or giving him his medicine, cleaning his bathroom, washing his clothes, cooking his dinner. Just everything. He thanked me for taking him and Mama to my sister's funeral. For taking them to the cemetery to visit their graves. He has to thank me for everything. If I put the margarine back in the refrigerator he thanks me. Don't know what that has to do with anything but I don't do these things just to be nice. After all, I was going to my sister's funeral too. And I wanted to visit their grave sites too. And I want to help and do things that will make him more comfortable and give him less to worry about. He's almost 90 years old. It's time he just relaxed and did what he wants to do. I don't know whether that's an Alzheimer's thing or not but it can get so frustrating.

One thing I do know is that throughout my life the family has said you can't get 2 Johnson's to agree on anything because they always defer to what the other one wants. And Daddy's family is so polite. Think: "Thank you". "No, thank You". "Thank you for thanking me". "No. Thank you for thanking me for thanking you", ad infinitum. It's true! So maybe it's Daddy Elf's upbringing that brings him to always thank me for every little thing. I'm not complaining. The world could use more of that attitude, especially in today's younger people. I guess I should be thankful that's all I get frustrated with in dealing with Daddy. By the way...thank you for listening to me vent! Geez, did I just say that? Thank you? Maybe I'm more like my Daddy than I thought. Well, that's not too bad.
 
The doctors classified my mother's dementia as vascular dementia not Alzheimers. At first I didn't realize she had dementia then I think I was in denial about it. After falling three times at home and due to my own illness (heart condition), her doctor and my mother herself, felt it was best she go into a nursing home. Here are some of the things I experienced:

~Once she had to go to the ER...of course I got there in a hurry. When I walked in she said "How could you show your face?!! You stole my rent money and the landlord was chasing me around the apartment with a gun. After he left...his wife did too". My mother had lived in public housing and no landlord ever came to collect rent. She and I were very close and loving together. She trusted me to take care of all of her business affairs which I did efficiently. I would never mess with her money because I was financially self sufficient. So that outburst shocked me. I moved away from her until they took her in a cubicle so as not to further agitate her.

~She told me she was going to sue me and my son (he was always her heart) for taking her money. In reality, what she had saved went to pay the nursing home for the few months before she had to go on Medicaid.

~At times she thought I was one of her dead sisters.. This was mainly at night when they go into the "sundowning" phase. I would go twice daily unless I was sick. One time I got there about 7 a.m. and she was calling my name; she was lucid. But the during sundowning stage (later in the evening), the dementia gets worse. One night she told my uncle (who visited her every evening at dinnertime) and a cousin from S.C. who went to see her to get out.

~When I took my beautiful little granddaughter to see her (she was about 18 months old), she thought my granddaughter was a doll.

~She told me the story of someone (in the home) coming into her room and chasing her with a knife. There was no room in her room to be chased.

So yes, dementia is so sad. You lose that person in a sense, before they pass away. My D.I.L. and her sisters are going through it now with their mom. My husband and I had gone through it with my co-wife. I had to "teach" him how to respond to her and treat her because he wasn't geting that her brain was no longer functioning like he expected it to. It is something that people can't wrap their heads around. My sister has been exhibiting signs that she is developing dementia. One of my nieces (not her daughter) and I talked about it and my niece thinks her children don't want to deal with it. My sister is very stubborn and has a very strong personality but I hope they do something soon.
 
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I read a paragraph or two, of each post, then scuttle away-too hard, to sad and were all headed there if we live long enough.
 
It's hard for anyone who has a parent (or, in some cases, a child) with a form of dementia. Because they can turn on you and they can be frustrating for many reasons. I refer to my daddy as Daddy Elf because he's not the same person he used to be.

Daddy has always been a wonderful man and father. He still is. Fortunately I don't have to deal with his anger and accusations but with dementia that can change overnight. Don't have to deal with diapers yet either but do have to clean his room several times a week from when he'd get up during the night and be confused and pee in the bedroom somewhere. And I'll wake up during the night sometimes hearing him walk through the house. I'll get up and have to talk him back into going to bed.

I've talked with so many people who are caregivers for one or both of their parents, grandparents, aunts, etc., and it's a crash course watching your loved one become a totally different person and having to deal with them as if they are a toddler, sometimes going through the 'terrible two's'. They all have a form of dementia but are still individual personalities albeit different personalities than what we remember them as. I do the best I can do and pray as much as I can.
 
My wife's brother & his wife has it at the same time. Sad situation. They didn't live long once they got into a care home. Sometimes your body goes but I think it's worse when your mind goes.
 

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