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AstroChuck's avatar

What can I expect in regards to my father’s advanced dementia?

Asked by AstroChuck (37659points) 1 week ago from iPhone

This question is for those of you who have had someone close who has been suffering with dementia.
My father is 96 years old and lives with my wife and two of my adult children who have moved in to help care for him. He has been battling advanced dementia for several years, and his condition has significantly deteriorated in just the last six weeks or so. He is in hospice care and has been for the last eight months. Despite this, he remains the same wonderfully polite man who always prioritizes others. Although he no longer calls us by our names, he still recognizes us and understands that we are important to him. His mind may be slipping away, but his kind and selfless spirit endures. However, he has started to be a bit more obstinate lately.
I know everyone’s experience with this is different and it varies from person to person, but what can I expect going forward? What are your experiences and your stories with the loved ones you have gone through this with?
I find myself falling into depression on occasion and think that perhaps reading about what others have gone through might make me feel less alone with this, even though I know I am not.

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16 Answers

janbb's avatar

My parents were both in nursing home facilities when they had their advanced dementia so it is a different thing. Both parents still knew who I was. One thing I can share is that in elderly people with dementia if there is a sudden change in behavior or hallucinations it can be due to a urinary tract infection so that’s worth checking out.

Otherwise, you have my sympathies. It is a hard road to travel for all.

Caravanfan's avatar

We went through the same thing. She wasn’t staying at my house, but her partner was taking care of her. He did the best he could—we got in home care for awhile to help but ultimately it became too much and we found a memory care facility for her that took good care of her. It’s an extremely difficult thing to go through and there are Alzheimer support groups around.

Love_my_doggie's avatar

**Me.** I lost my mother to complications of Alzheimer’s disease.

She had been a miserable, mean-spirited woman who lacked friends, fought with neighbors, and alienated family. Her abuse of me was so bad, I had to sever contact and be estranged for many years.

After her diagnosis, my mother had a personality transplant. She became a lovely, loving, and lovable person, someone who brought joy to my life and whom I gladly loved in return. This type of transformation isn’t unusual with an A.D. patient; as parts of the brain are damaged or can’t be reached due to broken neural pathways, other parts take over.

**You, and what to expect.** You haven’t told us the source of your father’s dementia. Dementia isn’t a specific disease or condition; it’s a set of symptoms resulting from one or more underlying cause(s). There are over 100 reasons for dementia, ranging from untreatable brain disorders to curable nutritional deficiencies, medication side effects, or depression. Saying someone has dementia is much like saying a person has a headache, skin rash, or abdominal cramps; the terms describe the manifestation, but not the reason.

Do you have a diagnosis of your father’s causal condition? That knowledge would help you forecast what’s ahead.

zenvelo's avatar

My mother was in a board and care home as she gradually succumbed to physical dementia. She could no longer feed herself and lost the ability to read or write. The best way to describe it was she was no longer present.

As @Love_my_doggie describes, talk to her doctor to get an idea of the type of dementia and what to expect. My mother’s decline was such that she never got combative, but others are not so fortunate.

janbb's avatar

@AstroChuck Just another observation. My mother was always erratic and self-centered and her dementia only accentuated those traits. My Dad was sweeter although occasionally a grump and he kind of stayed that way. It takes everyone differently and as @Love_my_doggie dementia is the manifestation. I agree with those who say talk to his doctor although you may well not want to subject him to a battery of tests but at his age, just mitigate the symptoms as much as possible.

RedDeerGuy1's avatar

I had visited my 90’ish year old grandmother, in 2010, and she was scared of me when I went to hug her goodbye. I was 6’5” and 300 pounds. I get it.

LifeQuestioner's avatar

My mom had dementia but was able to stay at home with me caring for her until probably about 6 months before she passed, and then that point I couldn’t care for her on my own and she was too weak. From what I understand about my own experiences and from what I’ve read, various stages of dementia can happen in a different order for each person. With your dad becoming more obstinate about stuff, he may be going through the anger stage about now, while my mom went through that early on. That’s a tough one to get through because they will get angry at you or whoever for no rational reason and you have to remember that you shouldn’t take it personally because it’s the dementia talking, not the person.

She gradually grew weaker and weaker and did not want to do any exercises at the physical therapist gave her. Also, her appetite really started declining over time, and then it got to the point where she had trouble swallowing. This happened not too long after she went in the nursing home and is also apparently something that happens with dementia near the end. We would bring her ice cream to entice her to eat something, but the care people told us not to bring anything with chunks of fruit or nuts in it because she might choke on it. And then eventually she just stopped eating.

My thoughts are with you as you go through this. It was three very long years of caring for my mom, even as my family didn’t want to give me a break. But looking back now, I cherish that time I had with my mom and I wouldn’t trade it for anything. We have many wonderful days of talking about shared memories or just sitting and watching a movie together. Try to keep your chin up, but I know it’s not easy some days and feel free to message me if you ever want to talk.

And I wanted to add, having read some other people’s comments, my mom was always the sweetest, least selfish person you ever could know, but she still went through that period where she got really mean and nasty and was angry all the time. I had a hard time dealing with that, especially because she had never been that way before, and it was my sister who was constantly telling me that it was the dementia that was making her be that way.

gondwanalon's avatar

I’m sorry that you and your family are experiencing this.

I imagine that most dementia conditions are very diverse. I’ve experienced family and friends suffering and dying from dementia.
My grandmother lived to my 96 and the last 10 years of her life her only enjoyment was listening to country music. Her brain was so gone that she couldn’t remember anything or anyone.
My high school buddy retired as an eye doctor 4 years ago. A couple months ago he died from dementia.
My wife’s has been longtime friends with a married couple. They both have dementia. The man is far worse off (sleeps all day. Has to wear a diaper. Can’t use the toilet or feed himself). He was in hospice for 1½ years and had to leave because he didn’t die. The wife is delusional. Costs $17,000 a month in a special care facility. Their money will all be gone in one year if the husband doesn’t die by then. Doctors say his body is still strong and he’ll likely outlive the money they have.

When I was younger I was terrified of having a stroke. Now at age 73, getting dementia scares me the most. I have advance directory (living will) to help prevent me from “living” without a brain. I also wear a “DNR” (DO NOT RESUSCITATE) bracelet. If I can’t feed myself then I’m not to have any IV’s, tube feedings, food or water. Being brain dead and a burden on my family is a miserable and sick existence.

syz's avatar

For my dad, falling was the beginning of the end. He had struggled with Alzheimer’s for more than 10 years, but it was a slow, fairly stable progression until he had his first serious fall, and then everything accelerated dramatically. He went from being cared for at home, to a rehab facility (that was awful), and then a memory care unit (where he did shockingly well), and we were searching for a skilled nursing facility when he ultimately fell and broke his hip. We had no choice but to agree to surgery since he would’ve been in pain for the rest of his life, but I knew it wasn’t going to be good. His blood pressure crashed after surgery, he went into hospice a day later, and then died 2 days after that.

Having been through this process with him, I can assure you that I have a clear and complete exit plan for myself when/if I develop this disease.

Edit: My mom had trouble separating the man from the disease, and kept expecting his behavior to make sense. Dad’s final months consisted of only 2 emotional states for him – fear and anger. The kindest thing that you can do for yourself is to find a way to find a balance between compassion and love for him with enough emotional distance that you can cushion yourself from the pain that lack of recognition, indifference, cruelty, and attacks when or if they happen.

It’s impossible to avoid the hurt. I knew it was coming, but I still felt a visceral shock the first time it was clear in his conversation with me that he had absolutely no idea who I was. My dad had never said a harsh word to me, and the first time he grew furious at me and yelled that I was a liar, I went in the bathroom and cried. But most of the time, I was able to shrug off his comments and behavior, or even find humor in them; my mom could never do that and had a much harder time of it.

(One of the common triggers for Dad was when he would argue that he had never been married, and some days I could not distract him or redirect him. One day in the kitchen, I said “No, you guys have been married for 54 years” and Dad looked at me and said “I married a man?” It wasn’t funny during at them time, but it makes me smile now.)

janbb's avatar

@syz My Dad also died after a broken hip and unsuccessful surgery. Eight days after.

Dutchess_III's avatar

My Mom too. But I’ll never be certain of that diagnosis. She suffered from undiagnosed depression all of her life. She was a ditz too.
All I can say is love love. And when he asks again, gently explain it like it was the first time.

Dutchess_III's avatar

My sister frustrated me. She was obviously impatient with Mom, and would roll her eyes and stuff. I wanted to slap her.

Tropical_Willie's avatar

Continue to love him, in the future he may not know who you are, but you know who he is !

snowberry's avatar

There are social workers who specialize in helping families adjust to people with dementia. We benefited from their services when Dad was alive. I highly recommend them. Ask his physician to help you find one.

LuckyGuy's avatar

This video might sum it up. It’s beautiful. Have tissues ready.

I’m sorry your family is going through this.

AlaskaTundrea's avatar

The book “The 36-Hour Day” was a great guide when my family was dealing with this nightmare disease. Surely it’s been updated to reflect current knowledge and experience.

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