My mother went into MC six months ago. The prior two years were unbearable with high anxiety, living alone with exception of home health care that wasn’t working out either due to my mothers OCD and constant need of me only.
The only way to pay for her care was to sell her house, she still
had a mortgage and didn’t make sense to do reverse mortgage.
She has never been told we sold it due to her high anxiety. However, she asks me all the time when she will be going home, am I paying her bills and her mortgage, etc.
I feel very guilty every time this topic comes up but the nurses told me not to tell her we sold the house because it will cause her much stress and it’s her only hope of “getting better” and going home.
I think it’s harder on me than her, this guilt is terrible. On the days she is lucid it’s especially hard because then I feel like she SHOULD go home, but there isn’t one to go to. Most days she can’t remember 10 minutes ago. She never remembers who visits her the next day. She was diagnosed with ALZ and high anxiety 2 years ago.
Your Mum has dementia, she has OCD, she will forget your answer and ask the questions anyways, but she will have been extremely distressed when you tell her the house has been sold.
You have nothing to feel guilty about, you are doing what has to be done to ensure Mum is getting the care she needs.
You don't tell dementia/Alzheimer's patients the truth about a lot of things, because 1. They get upset, 2. They won't remember and will ask about it again, and 3. They'll get upset. That's why you don't tell someone over and over that their spouse has died (once is enough), and you don't tell them the house has been sold.
You feel bad because it's your habit to tell people the truth and you've been misleading your mother for six months now. But even if you were to tell her the truth in carefully phrased bite-size sections I seriously doubt she'd remember what you said the next day. If you're thinking in terms of helping her understand what has happened and why I'm afraid you've probably missed the boat.
Concentrate instead on improving her quality of life in her actual home, which is where she lives now. How does she spend most of her days?
I man I knew all my life was in a home. His daughter visited everyday.
Man "Can u take the car in for an oil change
Daughter "sure Dad"
Next day: Man "Did u take the car in?"
Daughter "yes Dad"
Next day: Man "Did u pick up the car"
Daughter " Yes Dad, its in ur driveway"
Man "Good"
I would visit my Aunt and she had a man friend who called her every day. And every time she talked to him she would say "Well, I don't know when they are going to let me out of here" She was there over 10 years.
1.Since the house was empty, bugs appeared and you are having the exterminators in but you have to work with their schedule.
2. After the bug folks, you needed to have touch-up paint.
3. After the heavy rains, a leak was discovered and you are having it fixed.
4. After leak fix, you have some carpet repair.
And so on. I used most of these and they seemed to make her happy. Using these also indirectly answer the 'when am I going home' question. When the work is done!
Another way to prevent guilt (but not grief, which cannot be prevented now) is to tell the truth. The longer the truth is put off the more difficult. The person told the truth has so much more to work with, and the discussions will be so honest it may amaze you. My brother and I participated in the trajectory of his Lewy's diagnosis until his death, and he was/became a master at describing what his "world" looked like, and in knowing it was different from the world he inhabited before, and from the world of others. While he did dread where this would lead, he was glad he knew the reasons for the changes in his daily life. I paid all his bills and was his POA and Trustee; I gave him a monthly accounting, and he had a notebook to clip it into; this comforted him as he had always been very organized. His knowing where to find his list of who was paid when was his go to and his anxiety eased so many symptoms he had.
Be honest. Will there be grief and rage? YES! Is this not worth mourning? Is it not worth rage? The more uncertainty there is, then the more anxiety and feeling of betrayal. As a nurse, as a sister who traveled this journey with my brother until his death, that is what I recommend.
Feelings are barometers and when we are sad or afraid or angry, there is often good reason. I've always heard that even when memory goes, that people still have feelings so you may consider any one of a number of strategies for coping with your mom's profound sense of loss and also your own. I am not going to tell you not to feel guilty for what is going on and what you had to do because you will likely carry that guilt for a long time and telling you not to feel it won't help. I don't know what to tell you. I don't know that there's a cure or fix or right answer here. All I can do is be here with you between this rock and hard place that you find yourself in, that we all find ourselves in. At least we are not alone. We have each other to commiserate with and vent to.
I have advise for you as well. If I could go back to when my mother had MCI I would begin these conversations about selling her house and explain to her why it may be necessary some day. At least I would now feel as though I told her.
courage, I told him that his health, safety, and wellbeing are the most important things to me and that I need to do what's in his best interest. I told him that I would be unable to give him the care he needs and deserves with my current schedule and my obligations. I would feel neglectful. He said he understood but about 20 minutes later he forgot our entire conversation and asked again.
The doctor told me sometimes you just have to do strategic lying to make things easier on everyone. So I tell him when he's stronger and all healed we can decide if he is ready to come back.
I am currently in the process of getting him approved for Medicaid and I feel guilty about putting him in a nursing home, guilty about lying, and exhausted from everything else involved in the whole process. I'm a single mom with 3 kids, running my own business and I feel frustrated with myself that I can't make it all work with my dad too. It makes me feel like a bad daughter but I know I have to do what is best for everyone.
However, I have been told that there are some good ones. You need to find the best fit, stay involved and then just try and be happy when with your father visiting.
I can’t believe we are all living in this nightmare. I wish you well and healing of your heart.
Try to make your visits active enough to occupy her attention. It can be done and you may find that you guys can laugh together while you are keeping her so in the present that there isn't a moment to question you.
And then, the nightmare began... She had no idea she was home, sitting in her living room with all of her possessions around her. Her home of 53 years. She didnt recognize any of it. We were mortified. She kept asking when she was going home 😟 we found a better mc facilty for her, which is where she is now. In July we sold her home because we knew she would never go back. We will never tell her. It will serve no purpose. Try to let go of the guilt. We do what we have to do to make sure she has the best care. Thats all any of us can do.
I will work on my guilt and know I am providing a safe place for her. We also do not like the facility my mother is at currently. It has many management issues, seven key people left in last four months, poor communication and now a violation. We have found a new place for mom and she is currently being evaluated for the move (hopefully in 3 weeks time)
Maybe that will help me feel at rest if I feel she is in a good place. In my heart I know that going home (if even possible) would not have worked. I also know coming to live with me would not be good for my self or my husband. The anxiety I felt helping her daily when she was at home became unbearable and that was with daytime help. This disease it relentless and it takes professionals to deal with it properly.
Thank you for answering my question. Good luck to you on this journey and may we all feel peace that we are doing the best we can.
You did the right thing. She is safe and is where she needs to be.
Best wishes for you and your family during these difficult years.
"I've learned that people will forget what you've said, people will forget what you did, but people will never forget how you made them feel."
Knowing you want her to feel relaxed, calm and safe, keep this in mind. I hope it eases the guilt.
Can she care for herself better now than when she moved to where she it.
What can she remember about the house.
With dementia people often go back in their lives and the house they remember is not the last one they lived in, it may even be one from her childhood - that is not something you can provide even if everything else would be OK.
I don't think you should tell her anything about the house, follow the guidance of the nurses, they have been in the exact same position many times before and have learnt the best way to stop the residents becoming anxious and agitated.