Alzheimer's with Hallucinations

Katrina, my heart goes out to you as we know the ending. When we’re younger, we’re asked what is worse…losing the use of body or losing our memory. Both are bad! For what it’s worth, get into a support group which will help you. Secondly know that Alzheimer’s is usually worst on the family then the patient. Know that prayers are heading your way…David

Thank you David for the kind words.

Katrina:

So sorry for what you are going through. My husband has Lewy Body dementia and I can relate to how horribly sad it can be.

I agree with David on getting connected with a caregiver support group. The Mayo Clinic has a new trial to connect individual dementia caregivers with people who have gone thru an similar experience. It may be something for you to consider. It is called “Connect to Caregivers”. You can call (507)266-2719 for more information. I just signed up myself.

Hi @katrina123, my husband too, has Alzheimer's Disease diagnosed in 2019. He forgets who most family members and friends are. He still knows and relies on me heavily. It is heartbreaking to see how confused he gets sometimes. It makes it easier for me to think of this as a disease like any other. Instead of his heart or his kidneys, the damage is to his brain. It muddles his thinking, destroys his memory, and makes him anxious. He is not in any pain and is content so I am grateful for that. I've had a few years to get used to this and make my peace with it, but it still gets to me. Your journey is starting. It's okay to grieve. This is a terrible blow.
It sounds like your husband is appreciative of what you do for him and it doesn't sound like he's hostile or violent. My husband is good natured. I try to crack jokes with him as much as possible. He still responds to humor. I've been able to get him to play Scrabble by playing with him and helping him. We do jigsaw puzzles together. There are some for adults that are 35 pieces, but he can manage 100 piece puzzles too. Again, it's a joint effort, playing together as mates, not as opponents. We are having some fun at the same time he's keeping engaged, rather than retreating into a dark room.
He doesn't like it when I'm on the phone too long with a friend, and is not very sociable anymore. Usually, if we have a visitor he retreats to the bedroom. Again, it's part of the disease.
Teepa Snow is a good resource for caregivers. I just checked. She does have some YouTube videos on hallucinations and redirecting hallucinations.
I hope this helps and I wish you the best. Remember to take care of yourself and cut yourself some slack.

Hello, @katrina123 My name is Scott and I'm sorry for the journey your husband is on and for your journey as a caregiver. Caregiving is the toughest job I ever had and I always say it came with no employee manual, no pay, and no job description!

I first came to Connect due to the overwhelming isolation I felt as my wife's caregiver. I was in that role for over 14 years and I don't think there have ever been two days alike. Change is constant and makes the juggling act of caregiving all the more challenging for sure.

One of the things that helped me was to remember my wife's brain was broken and with that logic pretty much left our lives. I also pasted up a quote I found that says "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'"

Wishing you Strength, Courage, & Peace

John - Eventually I will probably get together with some group but right now I am dealing with time consuming physical therapy for a torn meniscus and my husband has to have surgery in a couple of weeks for invasive squamous cell carcinoma. Thanks for your advice.
Katrina

Teri,
I like the idea of working on puzzles with my husband. I might give that a try and see how he responds. You were saying that your husband is not very sociable anymore. Sometimes my husband is very quiet and at that time I really don't think he is tracking a conversation and then at other times you might have trouble understanding how very ill he is. One of the most difficult issues I am dealing with is that I never know for sure if he knows who I am. This really breaks my heart.
Also he always thinks there are other people in our house. Luckily my husband has not been unkind but was he ever upset when I took the car keys away from him.
I will look into Deepa Snow.
Thank you so much for the information.
Katrina

Scott,
First of all I can't imagine being in a caregiver role for 14 years. That must have taken a lot of strength and love.
My husband has had memory issues for a few years but it has only been within the last couple of months that he has hallucinations and gets people mixed up and imagines other people are in our house. This Alzheimer's caregiving role has really just begun for me and the fear of the unknown haunts me. I will just try to be strong through what is the most difficult time of my life.
Thank you for your wishes.
Katrina

Hi @katrina123,
I think we mourn for the person we lost, who our spouse was. I remind myself that that person is gone and try to think of my husband as the person he is now. Your husband may not know that you are his wife anymore, but he probably knows you as the person who is there for him everyday, helping and guiding him. He would be lost without you. The important thing is that you are there for him.
I was lucky in that my husband gave up driving easily. I think he was relieved not to have to drive anymore. He only lasts in front of the tv for five minutes now, if that. He's taken quite a shine to a neighborhood dog we feed everyday. We walk for half an hour to see her, weather permitting. He remembers her name and tells me he wants to bring her home, but that would be difficult.
Last Easter, I had a friend over for dinner. I told him she was lonely and asked him to talk to her. He did, but afterwards, he was exhausted and stayed in bed for hours afterward. Social interaction takes a lot out of him.
Sometimes, after a visitor leaves, he tells me, "I never want to see that person again."
The thing is, he won't remember that later. They say never argue with someone with Alzheimer's Disease.
I hope your physical therapy goes well in addition to your husband's surgery. My husband had hip surgery a year ago. I was worried the anesthetic would really disorient him, but he was okay.
Take care,
Teri

My husband just learned he has to take driving assessment course from a private company called courage kenny. He had refused before as he was not paying for it. He “knew” how to drive. Now the clinic dr will not sign off on it. He was very angry. Said it was family’s fault, meaning me as we said we had some concerns on his driving.
On monday I went to tale my walk. He asked how I liked my ride home when I got in the door? I told him I was walking Steve. He said I didnt see u come back. So I know you werent walking??? Who did u have pick u up?? A boyfriend???How do I deal with that story? Hallucination? Fabrication? I dont know. Tuesday I said I was going to go get my mile walk-in. But didnt say on treadmill as it was raining. He said how did you walk in the rain? I told him I was downstairs walking. That time he didnt get mad. He just said ok. I just never know anymore.
But today is a new day.