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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!

Honestly, two days is not even close to enough time to get an idea of what will or will not work in this situation. This is a hard transition for your dad. It takes time and, at that advanced age, it will take even MORE time to adjust than it would for someone younger. I wish no one ever had to go through this type of thing. But, the reality is that he will quickly forget the struggles, likely get her back home, and you may be right back to finding her another place and putting her through another move in a few short months.

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.
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Agingmyself Jan 16, 2019
Absolutely correct advice!
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Stay strong. My Dad, 89, cared for my mom with Alz in their home. But he was unable to make health decisions. When she could not get out of her chair due to a UTI, he waited until the next morning to call me. I called 911 and got her to the hospital. All this UTI, confusion, pneumonia and fever caused her swallowing to be off and she began to aspirate everything and get aspiration pneumonia. She passed away within a month. My Dad moved in with me. In looking back, the best scenario would have been for my parents to go into assisted living together when they were doing fairly well and could adjust to it together. Couples want to still live together after all these years. If they went into assisted living when they were able to, and if I would have made that judgement call for them, then when one passes, the other has adjusted to the new living situation. Timing is everything.
As husbands age, they usually aren’t able to take care of a spouse with Alz and make good decisions in their home.
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I have a similar situation. In 2015,my mother was admitted to a geriatric psych ward for stabilization following a UTI. She was then moved to a Dementia care facility. After one month there, in January of 2016, my dad took her home. She was doing well with the meds and was no longer emotionally abusive toward him. My siblings and I knew that she needed to stay, but my dad calculated the cost and knew their life savings would be gone in 18 months. I told him there were financial options, but he did it anyway. The past 3 years have been an emotional hell for my dad. My parents suffer needlessly. My mom stopped taking meds, says she is not “crazy” and is miserable. It will take another major “incident” of some sort to get her the help she needs. My 3 siblings and I no longer live in the same town and I trace 3 hours every other weekend to help out...I’m the only one that goes on a regular basis. Dad is 88, mom is 85. My advice....LEAVE HER THERE! Good luck with it all, I emphasize.
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Once you have located and accessed a good memory care program, LEAVE THAT ALONE, unless there is a compelling need to change (safety/neglect concerns severe enough that you would file a complaint against the facility!). Dad is in denial. He is lonely, and he misses his wife IN THEIR HOME. But, because he is not capable of independent care for her, this cannot be his independent choice! You have a say, because some of this responsibility is falling on you. Stay the current course and overrule Dad. Put your mom’s needs FIRST.
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You are really the only decisionmaker who counts here. You helped your parents a lot. Your brother can be the one to help, if he thinks Memory Care isn't right for your mother.

Don't back down.
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My husband's family is going through the exact thing- complete with siblings who say "why does she need care? She seems fine to me" and a caregiver who refused to have help into the home.

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.
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Oh, and if the facility has an assisted-living wing, it might be worth it to encourage him to move on-site. He gets to maintain some independence, can see her when he likes, and can get things done around the house:)
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Reply to 499HopeFloats
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Another thought...your Dad has given you 3 reasons he’s not happy with the situation. That’s good. Perhaps you can have him prioritize them. Then you could work on them individually and in order. Not happy with the care? Address that first. No time to putz around the house? Get more help with that. Work on his biggest worry first and try to chip away at them, instead of him just feeling overwhelmed with it all. Also you haven’t mentioned how Mom feels...is she happy with the move? From what you’ve written it seems so? If so, that’s a huge part of this equation as well, and he may not be taking her happiness and wellbeing into consideration, which you could gently remind him of.
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I am in a similar boat as your dad, denial! My children are telling me it’s time for memory care for my husband, and most of the time I agree, but there is still that feeling that I should be able to handle this longer! He was just hospitalized for a week and when he came home, it wasn’t too bad for the first few days, then I started getting worn out again, and I’m ready for him to go! Finances does play a roll as well, I worry about my retirement and will there be anything left for me! Maybe your dad is worried? The care facility I’m looking at will allow me to spend the night with him, maybe your dad needs to do that, as a reminder to what it was like at home, getting up multiple times, never getting a nights sleep! Best of luck to you, you sound like a great person and very loving daughter! If your the one involved, you make the decisions, the others are just talking the talk, not walking the walk, you are!
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Agingmyself Jan 17, 2019
Please check on the requirements for Medicaid in your home state. The spouse who is not institutionalized is not left destitute, unless you foolishly spend all you have before you apply.
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.
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There is an adjustment period for everyone. I agree with Msmacintx LEAVE THIS ALONE.

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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