Granddaughter who sold home (with husband) to move into childhood home with grandmother who was showing concerning memory decline and shouldn’t live alone. ALZ diagnosis came a few months after we moved in. We’ve been here 2 years and have a 1 year old son now and baby #2 on the way.
Struggling with grandmother’s poor short term memory (almost non existent it seems), and strong denial of the diagnosis/need for help. Thinks she would be fine taking care of herself if we moved out tomorrow, she just likes having people in the house to keep her company (is her perspective).
Husband and I are very burned out and have experienced depression/anger/anxiety from this transition and often regret selling our house/making such a permanent decision. Looking for insight and understanding into our situation. Also want to be realistic and plan ahead for our/her future.
We have a caregiver who comes 4 hours/day, M-F for the time being.
We realize this living situation is probably not the best for us since we are young and now have a family of our own to prioritize (I am expecting baby #2 next year). We are active in a church and want to have social lives/get out of the house with our kids. We think we will look into purchasing a home late next year/possibly in 2024, waiting to see what the market is like since it’s awful now and things are stable here, so no need to rush. We would ideally make a slow transition out and probably up in-home care and allow her to stay her as as long as financially feasible, as that was our whole intent with moving in to begin with - to allow her to stay in our family home as long as possible.
However, we do realize that if she gets to a place where we don’t feel safe leaving for a few hours at a time/in the evenings (we’re always back by 11, she watches nightly news and doesn’t go to bed until 11:45pm!), then at that point we would have to expedite moving out. We cannot feel homebound and unable to have social lives/pursue our own livelihood at our young age and with a family.
I could list a million daily frustrations in this living situation/with my grandmothers diagnosis, but I’m sure you can fill those in for yourselves. Overall, we have learned to ignore many small irritations and adjust our own reactions/expectations, and set up barriers/safeguards to keep her out of things to avoid recurring situations. We basically make the house/her environment the way we need it to be so she cannot get into trouble or cause trouble, if that makes sense. We realize it could be (and has at times), been much worse, so bad that we have put several offers on homes in the past 2 years and strongly considered moving out ASAP (mostly for the sake of our marriage and mental/emotional health).
I guess I’m just looking for perspective here; I don’t think some of my immediate family realize this living environment is draining and difficult, and they view it as “you’re living somewhere rent free, it can’t be that bad, it’s a decent sized house, she minds her own business.” We are aware of all these factors, yet we do feel some regret because we would much rather be paying our old mortgage and sadly wouldn’t have made this huge life transition had we known the diagnosis/trajectory before moving in.
Sometimes I feel awful for feeling this way/being so frustrated 😞
I guess this isn’t a question, just been holding onto all of these emotions and thoughts for 2 years and wanted a place to share them.
11 Answers
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Nice that you've been able to live with her for awhile and help her out. But, yes, it's VERY difficult. I would increase the number of hours a day she has a caregiver. I would be careful of leaving her alone. Does she still try to use the stove? If so, babyproof it. I don't know how long you're leaving her alone at night but you should consider getting her a babysitter so you can go out with a clear mind.
Does any one have POA?
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Who gets the house if she passes away? Was the plan for you to make this move to her house and get it if you took care of her? Or, will your parent get the house...meaning they could move it on to you as a gift for caring for her? Those are rather important questions in order to give opinions on what you should do. What were ALL of the benefits of you moving in with agreement to care for her?
For now, you are/have been able to enjoy leaving her alone for periods of time so that you can go out. That would indicate to me she is still in a pretty good place to move around (bathroom/etc) and doesn't require 24/7 hands on care. What does the 4 hours per day caregiving care consist of? House cleaning that all of you enjoy? House chores you all enjoy? I ask, because if she needs personal physical care 4 hours per day, I'm not sure she should be alone at night when you go out. You didn't say who pays for the 20 hours of week caregiver care, but if it comes out of her money - then use more of her money to pay for more hours when you go out (if she requires someone to be with her) or increase the hours when/if she needs more personal care.
Can't really offer suggestions to this issue without more details.
Are all legal documents to in place? PoA for medical and financial?
As someone said on this site recently "at the beginning of all this, I didn't know what I didn't know". Make sure you understand Medicaid regs for your state and scrupulously avoid co-mingling funds
It sounds like your grandmother would benefit best from receiving around the clock care. Her situation is not going to improve. She will continue to decline.
She may not realize that she needs help but that doesn’t mean that is reality. The reality is that she requires a great deal of help and you have important needs of your own.
You have a husband, a child and another on the way. You deserve to live together as a family, not as caretakers.
Where are your grandmother’s children? Why aren’t they looking out for their mother? If they don’t wish to do the hands on caregiving, then they can make arrangements for her to enter a facility.
I hope your grandmother will be placed in facility soon and you can visit her as her loving grandchildren.
Wishing you and your family all the best.
You didn't have a crystal ball. No-one does. You saw Grandmother needed help - you stepped in to help. A kind & practical thing to do.
The awful diagnosis of Alzheimer's. A progressive disease. Needs keep increasing as it progresses. You have adapted very well, adding in a caregiver. Many folk get stuck trying to go it solo.. or stuck in only-family-can-help thinking. Congratulate yourself!
By being aware of your Grandmother's needs, & being flexible, you have very naturally been able to keep up so far.
But as someone wise said to me "it's no-one's fault, but the disabled or elder person's life can grow to take over."
I definately have felt this dynamic starting... I knew I had to reassess. That new solutions must be found or my own life would be dust. Unlike some holier-than-thou-put-others-first types of people - I just saw it as common sense.
Those that can't look after themselves - need help. If not enough help can come to them - they must move to where the help is. ie hire in village helpers or move into a care 'village'.
If Grandmother's needs, for ADLs, emotional, mobility or safety can no longer be met at home, or are causing the other occupants a great burden, it is time to consider the aternatives.
Welcome.