What steps might I take to prevent this from being an emotional roller coaster for everyone as her Alzheimer's is only going to progress?
Mom is 86 with stage 7 Alzheimer's. Dad is 84 with back issues, still drives, takes care of the house and cares for Mom. I have Mom in a day care 3x a week, but Dad's frustration with her has been increasing, which then drives her anxiety and it is a bad circle of stress. I am available a lot to support and take on responsibilities for him. My other 3 siblings are barely involved (unless they have an audience). I attempted introducing some home care help in the past, but Dad was uncomfortable and asked me to cancel it after just 2 visits.
Mom was in hospital with bladder infection and moved to Memory care on 1/10 went so smoothly and I felt a sense of calm and relief that she would get more engagement and professional care-taking there and Dad would get respite needed. However on day 2, he said this was not going to work. As I talked with him it boiled out to 3 reasons:
1) He feels he will not be able to get anything done around the house as he is always with Mom at Silverado.
2) He is getting wound up by my one brother that Mom is not getting the care they said they would provide, so he is convinced he cannot trust them and he can do it better at home.
3) He misses her at home with him and is heart broken
I have made some suggestions, and try to remind him of all of the things he was telling me before we moved her last week. About how he was tired of being her nurse, about how she sometimes would not stop talking and asking the same questions, about his frustration with her hiding things. About how this disease is only going to get worse and harder for him and Mom at home. He is in denial and says she really is not that bad, even though doctors are telling him the truth about her in stage 7 and her swallowing is getting worse.
I am not going to battle with my Dad or siblings (who seem driven by inheritance more than care for both parents and are happy to have Dad take Mom home.) I am the one involved and so now will meet with Memory care to provide the notice to move Mom back home and re-establish the the 3x week day care and the neighbor ladies who help me with driving Mom. I am conflicted as I want what is best for them, but I see Mom thriving in memory care after just these few days and the difference from when he has her at home. She is eating better, sleeping better and moving around a ton more. She is better around people and with engaging activities.
Thank you for reading/listening to me. I am wondering if anyone has been through this moving in and moving out. How can I get Dad to take a break before he gets to the point where he is calling 911 or running Mom to the ER whenever he is frustrated? He thinks he will be able to just send Mom to Memory care whenever he needs a break - I am not sure if this is feasible.
I know on some level all things are going to happen in God's time and way, but I am concerned and worried. Dad says the siblings promise to be more involved, but based on the past I have little faith, especially as they all seem in denial about the facts of this disease, its progression and how Mom really is doing. It is like they all, including Dad, see how Mom is thriving since going to memory care and think she is "fixed" and will be the same now at home.
I will take any advice and suggestions. Thank you so much!
It would be better to say that, if in THREE MONTHS, things aren’t working, then you will look into options.
If he is adamant, you may consider simply throwing the ball back in his court. You mention that you will take all of this on. Gently, I ask, “why?” If he is fully competent, HE should be the one to get everything in place to move her back home. He can talk with the facility, he can arrange movers, he can get the medical help (nurse, bed, etc.) in place BEFORE she arrives back home.
Sometimes, when an elder isn’t happy with a situation, the only thing that helps is having other people do their bidding. Have other people “fix” the problem. Especially by jumping through hoops. They feel like they have some control in a very scary situation, and the activity is distracting from the real problem.
The real problem is that his wife needs care, and he is no longer physically able to give it. You can’t fix that for him. He can’t fix that. The only thing that can be done is to alleviate the burden on him and make mom as comfortable and secure as possible.
I know it was a ton of work for you and maybe siblings to get to this point. We have been there. I would caution you not to grab this and run with it. They both need time to adjust. You have lives you likely have to get back to.
This is not an emergency. I know it probably feels like one. Capable people like to get.things.done. Sometimes, we all have to just sit in our new normal and find a way to live with it. Sometimes, we have to realize that we can’t take away the fear and sadness that comes with old age and especially with dementia. We can only hold their hand and tell them that this, indeed, sucks and we love them.
You may go a different route, but I would encourage you to breathe on this for a lot longer than a few days. Help them/visit as needed, but go back to your living, and let them adjust to their new normal.
If he wants to change things and is telling you he is competent, then he should be able to execute plans without your help. If he needs your help to get her home, he probably isn’t capable of carrying this through to the end. From swallowing, this gets radically more difficult.
Parents at this age inspire kids to heroic measures by pushing buttons and/or because you love them and want to see them happy. You cannot give them happiness other than a family that listens to their stories, hugs them, visits relatively regularly. Building rabbit holes to fight old age is an exercise in futility and draws attention away from creating a best possible end. Just some food for thought.
As husbands age, they usually aren’t able to take care of a spouse with Alz and make good decisions in their home.
Don't back down.
We were advised to make the nursing home aware that we didn't think home was a safe discharge for her due to her husband's refusal to allow outside help, advanced age and physical strength. We did that in writing. The nursing home then said they could not discharge her without a safe discharge plan in place. He strongly resisted having them set up a plan and while they argued about it, her swallowing got much worse. Now it is clear he won't be able to feed her at home and he is slowly accepting that she has to live in the nursing home. Her physical health is much better now that she is getting care. However, her Alzheimer's is much worse.
You are correct. The time is coming when he won't be able to care for her at home and moving her back and forth may very well accelerate her decline.
If the sibling with concerns about the facility's care would like, he can investigate a lateral transfer to a facility that he thinks is better. You may be in the difficult position of explaining to your dad that you will not agree to be part of the discharge plan.
Best of luck going forward. This is hard.
A capable attorney who specializes in Elder Law can help you understand Medicaid requirements and protect your own retirement funds while getting your spouse the care he needs.
Most Elder Law attorneys will give you a free initial consultation and explain what they can do and their cost. Sometimes they give seminars for seniors that explain the process.
I don't know if Medicaid will pay for Memory Care, but it's sure worth looking into. In my area, a skilled nursing facility has a MC unit, and I'm sure some of their patients are on Medicaid.
My my suggestion to your dad is we’re doing what’s best for HER. Maybe make some suggestions for him to do differently at home.
But, giving written notice to MC - DONT. If you have to get lost in the “ dont know who needs to get approval for?” Or “ I need to start calling home health companies to find 24/7 - oh my dad look what this costs??? “ STALL for time for her to adjust and he will, too.
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