My Mom had Dementia but ALZ runs in my Dads side of the family. Early on I had problems reasoning with Mom. As her short-term memory got worse so did her ability to process what was being said worsened too. I remember walking into her Hospital room and these student nurses explaining her care. I could tell by her eyes, she had no idea what they were saying. She probably was still trying to process the first word and thats what I told them. She has Dementia and has no idea what you are saying.
Sorry, its all up to you now. You will be making all the decisions for her based, like said, on what you know about her likes and dislikes. Mom had stopped being able to follow a menu so I gave her 3 choices of what I knew she liked, then 2, then I chose for her always Liver and onions. I chose the AL she would be placed and it was not an unhappy ending. It was what she could afford 5 min away from my house so I could drop by when I wanted. She was easy to care for so the aides loved her.* The AL was one floor so she was able to walk around it. Chairs and couches along the hallway she could sit. A common area to visit with other residents. Entertainment and always Birthday and holiday parties going on and I sat thru a few. Holidays they had dinner where the families could join in. If you pay, you can have lunch or dinner with a LO. Mom did very well there. My Aunt who had ALZ was in a Senior Community for 12 yrs transitioning from an AL to LTC. She was as happy as someone with ALZ can be. They are in there own little world. There is no reason for her to be involved in her care because she just can't process or make decisions. When I placed Mom, she was maybe stage 6. I told her she was going to a nice apartment where she would meet new people. She adapted very well.
*My Mom lived with me for 20 months. In that time she declined almost monthly. I live in a 4 story split level with 3 sets of steps. Moms room was in the bottom level where she had a bath of her own and easy excess out of the house. She could not do steps without assistance. Because if the set up of my home, she was in her room most of the day but was able to see us milling around on the next level. I was going to place her in an AL for respite so I could attend a nieces wedding 8 hrs away. Found they were having a 1/2 price sale on room and board making it affordable so I ended up placing her. I think she did very well there.
I remember a man coming to live there. He was always trying to escape and always anxious could not sit. I remember an aide saying "they waited too long". Meaning that if the family had placed him earlier on, he may have adapted better and excepted the AL was now his home.
When I had to move my mother into Memory Care (from regular Assisted Living), I got her room all ready for her beforehand. I had a wheelchair accessible van drive her from the rehab SNF over to the Memory Care and I was waiting for her there, to have lunch, meet the residents, and to see her new digs. Her room was set up with all of her things already in it, pictures on the wall, bedspread on her bed, clothes in the closet etc.
I worked as a front desk receptionist in a Memory Care AL in 2019/2020 and met many husbands who'd placed their wives in our care. They'd come by (some on a daily basis) to visit their wives, bringing snacks, small gifts, a cup of Starbucks, a Dairy Queen. Some would take their wife to lunch or dinner, or just watch a movie together in her room cuddled up on the bed or sofa.
The 50 tips in the article will address all the questions you have in terms of whether to take her with you (NO) etc.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia/AD and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.
When I said happy ending I was thinking of when I have to put her in memory care. Her older sister recently died from Alzheimer's, and it was ugly. We have always made important decisions together but is seems it is up to me alone.
Do I talk to memory care providers by myself, or do I cause her more pain by bringing her along?
Do I avoid discussing her condition with her? When I bring it up she calls herself stupid. She was a smart, accomplished woman before this terrible disease.
I would not bring her to memory care places. ALZ is ugly, no doubt. Talk to providers yourself and do the best you can for her. She does not have the ability to be meaningfully involved in decisions anymore. Unfortunately, it's all on you now. It's a lot of responsibility but you CAN do it!
I struggle with talking or not talking about the dementia with my mom. I often say "that's because of the dementia mom" and she often has no clue what I'm talking about. So I guess I should back off from explaining things so honestly. I guess it just doesn't help anything.
Rather than trying to guess at what you're talking about in terms of 'making plans for an unhappy ending w/o upsetting your wife', why not tell us? Then we can leave you suggestions that make sense and not be taking stabs in the dark!
Depending on her cognition most plans you do not involve her with the discussions or the solutions to said discussions. Care Plans do not need her involvement Funeral plans do not need her involvement For many with dementia ordering from a menu is impossible so you eliminate as many choices as you can. The menu that I am talking about is anything not just food. You know your wife probably better than anyone. I am sure throughout your marriage you have discussed things. You went to "Uncle Alberts" funeral and they had an ugly casket and floral arrangement. Did your wife say.."Oh, I would want a casket that is a light wood and I want all plants, no cut flowers so you can plant them later." Or "I do not want to be stuck in the ground, I want to be cremated so you can scatter my ashes at that cottage by the lake we went to for our summer vacation" YOU make the decisions that YOU think she would like. Don't worry about anyone else.
I always said I would try to make the best decision that I could given the information that I had at the time. And making a decision in that way you have done the best that you can do. You can not live regretting. If you make the decisions with your heart and your head. Let your Heart lead with some decisions but let your Head make some of the real important ones.
If you’re talking about funeral plans, have the informal discussions about what you and she would like. You can run it by her that you’re going to call the funeral home, but don’t be surprised if she isn’t very interested. That’s fairly typical. You don’t need her to sign the pre-planning contract where the money is paid up front. You can sign it and be the person with whom the plans are contracted. They are in place for when the inevitable happens, and she doesn’t need to know if you don’t want to mention it. She’d probably prefer that you don’t. She has a terminal condition, but she’ll forget that at some point, which may be for the best.
I'm going to assume the unhappy ending involves a nursing home. If that's the case, you make plans without her involvement. Find a lovely memory care facility that can care for her through end-of-life. Involve the people there in how best to prepare for the move, because they do it every day and have excellent tips on how to do it. If she's cognizant enough, they may suggest you bring her to visit, but you go without her FIRST. I hope you have support from your children or other trusted family or friends.
This will not be a happy thing for anyone, but know in your heart that you are doing the best you can for her. Caring for her at home may be untenable, so don't worry that a memory care facility is the best thing. Honoring your vows to care for her in sickness and in health doesn't mean you are the one doing the hands-on work.
Need more details please in order to give suggestions.
Since you meantioned "not have a happy ending" do you mean funeral plans? And she currently has none specified? If she is cognitively unable to participate or process this, then please do not involve her. Just do what you think she'd want if it's in the budget.
My Mom had Dementia but ALZ runs in my Dads side of the family. Early on I had problems reasoning with Mom. As her short-term memory got worse so did her ability to process what was being said worsened too. I remember walking into her Hospital room and these student nurses explaining her care. I could tell by her eyes, she had no idea what they were saying. She probably was still trying to process the first word and thats what I told them. She has Dementia and has no idea what you are saying.
Sorry, its all up to you now. You will be making all the decisions for her based, like said, on what you know about her likes and dislikes. Mom had stopped being able to follow a menu so I gave her 3 choices of what I knew she liked, then 2, then I chose for her always Liver and onions. I chose the AL she would be placed and it was not an unhappy ending. It was what she could afford 5 min away from my house so I could drop by when I wanted. She was easy to care for so the aides loved her.* The AL was one floor so she was able to walk around it. Chairs and couches along the hallway she could sit. A common area to visit with other residents. Entertainment and always Birthday and holiday parties going on and I sat thru a few. Holidays they had dinner where the families could join in. If you pay, you can have lunch or dinner with a LO.
Mom did very well there. My Aunt who had ALZ was in a Senior Community for 12 yrs transitioning from an AL to LTC. She was as happy as someone with ALZ can be. They are in there own little world. There is no reason for her to be involved in her care because she just can't process or make decisions. When I placed Mom, she was maybe stage 6. I told her she was going to a nice apartment where she would meet new people. She adapted very well.
*My Mom lived with me for 20 months. In that time she declined almost monthly. I live in a 4 story split level with 3 sets of steps. Moms room was in the bottom level where she had a bath of her own and easy excess out of the house. She could not do steps without assistance. Because if the set up of my home, she was in her room most of the day but was able to see us milling around on the next level. I was going to place her in an AL for respite so I could attend a nieces wedding 8 hrs away. Found they were having a 1/2 price sale on room and board making it affordable so I ended up placing her. I think she did very well there.
I remember a man coming to live there. He was always trying to escape and always anxious could not sit. I remember an aide saying "they waited too long". Meaning that if the family had placed him earlier on, he may have adapted better and excepted the AL was now his home.
https://www.agingcare.com/questions/questions-to-ask-memory-care-facilities-before-placing-a-lo-470196.htm
I’m sorry that you are both in this position. It really stinks.
Here is an article with 50 Tips on Transitioning a Loved One to Memory, Dementia, or Alzheimer's Care:
https://www.seniorlink.com/blog/50-tips-on-transitioning-a-loved-one-to-memory-dementia-or-alzheimers-careyour-blog-post-title-here
When I had to move my mother into Memory Care (from regular Assisted Living), I got her room all ready for her beforehand. I had a wheelchair accessible van drive her from the rehab SNF over to the Memory Care and I was waiting for her there, to have lunch, meet the residents, and to see her new digs. Her room was set up with all of her things already in it, pictures on the wall, bedspread on her bed, clothes in the closet etc.
I worked as a front desk receptionist in a Memory Care AL in 2019/2020 and met many husbands who'd placed their wives in our care. They'd come by (some on a daily basis) to visit their wives, bringing snacks, small gifts, a cup of Starbucks, a Dairy Queen. Some would take their wife to lunch or dinner, or just watch a movie together in her room cuddled up on the bed or sofa.
The 50 tips in the article will address all the questions you have in terms of whether to take her with you (NO) etc.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia/AD and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's by Diana Friel McGowin
https://www.amazon.com/Living-Labyrinth-Personal-Journey-Alzheimers/dp/0385313187/ref=sr_1_1?crid=2J5U4NLCCROXU&keywords=living+in+the+labyrinth&qid=1663003061&sprefix=living+in+the+lab%2Caps%2C144&sr=8-1
The more you know about Alzheimer's, the better you'll be able to understand your wife and her new world, and how to enter into it with her.
Best of luck to you.
Her older sister recently died from Alzheimer's, and it was ugly. We have always made important decisions together but is seems it is up to me alone.
Do I talk to memory care providers by myself, or do I cause her more pain by bringing her along?
Do I avoid discussing her condition with her? When I bring it up she calls herself stupid. She was a smart, accomplished woman before this terrible disease.
I struggle with talking or not talking about the dementia with my mom. I often say "that's because of the dementia mom" and she often has no clue what I'm talking about. So I guess I should back off from explaining things so honestly. I guess it just doesn't help anything.
Care Plans do not need her involvement
Funeral plans do not need her involvement
For many with dementia ordering from a menu is impossible so you eliminate as many choices as you can. The menu that I am talking about is anything not just food.
You know your wife probably better than anyone. I am sure throughout your marriage you have discussed things. You went to "Uncle Alberts" funeral and they had an ugly casket and floral arrangement. Did your wife say.."Oh, I would want a casket that is a light wood and I want all plants, no cut flowers so you can plant them later." Or
"I do not want to be stuck in the ground, I want to be cremated so you can scatter my ashes at that cottage by the lake we went to for our summer vacation"
YOU make the decisions that YOU think she would like.
Don't worry about anyone else.
I always said I would try to make the best decision that I could given the information that I had at the time. And making a decision in that way you have done the best that you can do. You can not live regretting. If you make the decisions with your heart and your head. Let your Heart lead with some decisions but let your Head make some of the real important ones.
This will not be a happy thing for anyone, but know in your heart that you are doing the best you can for her. Caring for her at home may be untenable, so don't worry that a memory care facility is the best thing. Honoring your vows to care for her in sickness and in health doesn't mean you are the one doing the hands-on work.
Since you meantioned "not have a happy ending" do you mean funeral plans? And she currently has none specified? If she is cognitively unable to participate or process this, then please do not involve her. Just do what you think she'd want if it's in the budget.