My 91-year-old mother in law has lived with my husband and me for 8 years with her own walk-out level of our house. Our kids have moved out but live nearby and go to school. The last two years have been filled with her dementia symptoms increasing and her becoming more and more unhappy. We (I) spend most days worrying about what to do with and for her. We just started having a caregiver spend 5 hours a day for three days a week with her. She now spends her days calling for help, asking to go home, saying she's all alone, she's stuck in jail, can't do what she wants, she's cold, she's tired, she's sick, nobody likes her. All this even if someone is sitting right next to her. She packs up her belongings so she can go home then tells me somebody has left their stuff in her room. Yesterday we had a full Christmas day with all our kids and new grandbaby all trying to distract her with happy memories, and redirection. My brother-in-law tries to help and keep her if we go out of town, but now she hates to go to his house too. I'm starting to think if she isn't happy here, why keep her here? She can be just as unhappy in a facility and we can have some peace.
So what are you waiting for? At least you will be able to once again be happy in your own home.
There comes a point in the dementia journey where you must not only do what is best for your loved one but also for you. And to me this is a no brainer. Start your memory care search today.
There she will receive the 24/7 care she needs and someone will always be close by, and you and your husband can get your life back and just be her children and advocates.
I wish you well on this next step in the horrible journey of dementia.
What are you waiting for? She is beyond what you can offer, she needs 24/7 care in a MC facility.
Time to do what's right for her and you both, this could go on for many more years.
The "going home" is very common. My Mom went though it herself. At 95, she wanted to go home to see her parents and her sisters. So I had to quickly come up with a response that I felt she could understand, even if it was for a moment. For Mom's parents I told her they were visiting the old county, and Mom was happy with that. For her sisters I had to think fast for something she would believe.
Sometimes we need to "fib" about the house where our parents had been raised. Oh the house is being painted. The house is being remodeled, have to wait until it is finished. Etc.
She lived in her granny flat next door to us for about 18 years. It was furnished with things from her previous house. About 5 years ago the confusion started. About 3 years ago she insisted she was staying in a hotel that had all her furnishings (or exact duplicates of them) and she wanted to go home to the previous house. She was still able to state the city. She also thought she was the age that corresponded with her time there. Over a year ago she insisted that she has never even seen where we live, having forgotten 18 years here and countless visits. Now, in a small care home, she sometimes thinks her room is in a hotel if she’s older or in her childhood home if she’s under 25.
I am relieved that she’s in care because I couldn’t handle her anger and demands to be taken home, her unhappiness and combative nature. Relentless. Honestly, my mother is calmer and more content than she has been in years. It’s more likely the progression of her dementia than the environment. (although her care is excellent)
I suggest you read this 33 page booklet which has the best information ever about managing dementia 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 reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
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
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
I wish you the best of luck with all you have on your plate right now.
Why not assume instead that she’ll be LESS unhappy in an environment that is cozy, structured and predictable, bright and pleasant, and designed to accommodate and compensate for some of the negatives she’s experiencing in her present living environment.
Then consider that once relieved of the sadder and more difficult aspects of her day to day care, her family may once again enjoy brief visits with her.
So seek out the very best residential site you can afford, and give it a try.
Don’t ask her if she’ll go or tell her that she’s going. Just DO IT.
If/when she seems to have adjustment concerns observed by her care staff, a visit from a geriatric specialist in cognitive behavioral disorders may prove helpful.
You don’t have to admit to any “failure”- just move forward to something new and better.
I am an advocate for a loved one staying in their own home as long as possible.
As you said, your MIL left hers 8 years ago to live with you.
To me, at that point she was in a level of care or she would not have needed to be moved. Perhaps not too much inconvenience to your family at that time but still an adjustment for all of you.
Then her needs began to escalate two years ago.
Now she is on meds and has a part time care giver.
In hind-site, to me, what you do from this point is primarily a financial decision until it reaches a tricky point where her care is perhaps compromised because you will have burned out.
Caregivers at home helps and if you have the correct level of help it can keep you from having to deal with a facility as long as possible. Even though the facility care is a huge help, you or someone still has to be her advocate and see that her care is managed properly.
I encourage you to make BIL a part of whatever decision is made and ask for cooperation and support through making the decision and sharing the responsibility of being her advocate in whatever facility she is moved to.
I used Home Health through original Medicare for the homebound and then transitioned to hospice for my DH aunt. She also had a morning aide to help her with ADLS. In the end of her time at home she also had an evening aide for an hour to get her ready for bed. But she had funds to pay for this and she was bed bound.
There reached a point where it was not a better fit for her at home and when she actually moved it was because of problems with her home needing repairs. I’m not sure how long I would have/could have continued if that hadn’t happened. Only later did I realize it should have happened already due to the toll it was taking on me. I could never do it again.
But, for me, it is difficult to deal with all the issues of facility care. I would turn that over if I weren’t such a control freak and could trust another. I love her very much and it is slow torture watching someone you love fade away. In her case, she has no pain. I envy her that.
Facilities are not all the same, with some it is the procedures, some aren’t adequately staffed, meds have to be managed, etc. The list goes on but overall, when I look at the big picture it is necessary and most of the issues bother only me. She could care less.
And do know that when you move her, regardless of where, she will decline before stabilizing for awhile, just as she most likely has at home when staying with BIL.
Please do advocate for yourself and your own health and accept you have done what you could when it did make a difference in her happiness. Good luck and let us know how it all works out.
edit.
in my aunts case she needed to move in order to make repairs. She could easily see that. Then it was a point of the repairs not being finished. She accepted that. She no longer asks. On Christmas she could tell I was in pain, asked me about it and when we left she told me to go and enjoy my life. I am not totally sure she knew who I was.