My mom was entrepreneur, had her own businesses and was active on boards. She was driving up till 2023.
The past 2 years have been a series of health issues, broken hips, broken shoulder, 3 heart stents, numerous UTIs, weight loss and an official diagnosis of Alzheimer’s. Most recent dr.s appointment was mentioned Failure to Thrive - due to weight loss.
We were recently offered Hospice, going with Palliative care until family can decide.
Mom stays in bed all day. She uses a walker. She doesn’t want to come out of her room and participate with family activities (watch tv, eating with family etc.). She plays solitaire on her phone most of the day. This is her activity. She does not want visitors. She is unable to remember how to use her phone to make calls, but can text.
Do I push actives or just let her be? Is this it? Am I just watching a slow decline to End of Life.
I think that cwillie, here, would say she would.
Yes, I think you are looking at a decline and at end of life, and the palliative care and hospice suggestions confirm that.
How long would you wish your mother to go on in this condition. No, in WORSE condition, because this will be a long slow and inevitable slide.
My own brother died of sepsis about one year after his dx of probable early Lewy's dementia. He longed for such a thing, and he got it. I was relieved for him, despite missing him awfully. He had a good life. He was 85. A gay man, he saw so many changes. From having to live a closeted life in Chicago, to seeing a gay man run for president without our nation going nuts.
Celebrate mom's life with her as well as you are able. My brother was a master at discussing how he saw his new world of Lewys. I heard such fascinating things from him. Sit with mom and look at pictures, make a scrapbook, eat popcorn, whatever will work if anything will. Try to keep her skin intact to the best of your ability. Get Hospice.
My heart goes out to you. Only you can know your mom best now and decide how to move forward through this place and time to the place we are ALL going.
This is a tough position to be in and I sympathize with you. Wishing you the best of luck with a difficult situation.
Imagine if you were happily just being. Doing the things that still bring you pleasure. Then a loved one starts pushing and prodding and wanting you to be with the family (which is of little interest at this point) or go get ice cream (which you vaguely remember, sort of).
I've long believed that the activities that are pushed on elders in mental decline are just as much (or maybe even more) for their LOs to help them believe that mom is going to get better if she keeps doing jigsaw puzzles or folding towels. Not going to happen.
Accept. Then you'll feel better.
I sympathize with your situation. My mother was very active with volunteer work (football team, humane society, veterns, etc.) and became disabled with her back. She was scheduled for surgery the week she suffered a hemorrhagic stroke. She woke to find out she missed her surgery, was no longer a candidate for surgery, and was in the hospital. She transitioned to rehab and was released on hospice. My wife and I relocated to assist with her end-of-life care and wound up having to handle it all.
The behaviors you are describing are exactly what we faced and we were encouraged by hospice to let her be, eat whatever she wanted, and try to be as supportive and caring as possible.
Six months after we arrived mom was released from hospice (gaining weight, acceptable care in the home, no visible decline). We scrambled to find her a new PCP, Pain Management, Mental Health, Physical Therapy etc. She did not complete her rehab after the stroke because she was released to hospice.
For two years we kept her on a regimented schedule of eating healthy, fighting to make her do the (2) sessions of PT a day prescribed, and bathing. Every day was a battle just to get her out of the bed. She would use her walker for leaving the house, but did furniture surfing and wall support in the home. She didn't want to go anywhere, didn't want people to come see her the way she was, and was very depressed.
Finally, in August '23, she had good labs and her strength was good enough to consider some options. We started looking for Adult Day Care centers that could provide companionship and activities she would be interested in. We found The PACE Place (Program for the All-Inclusive Care of the Elderly) met her needs. She started at The PACE Place in Nov '23 and the difference in her has been amazing! She goes to PACE from 9-3 M-F. They come and get her, and bring her home. They shower her, feed her breakfast, lunch, and a snack, and have a schedule of daily activities and outings. PACE even handles her PT and OT every day. They have a doctor, nurses, PT, OT, a nutritionist, and psychiatry ON-SITE. They also handle scheduling appointments, and provide her transportation to and from with a nurse's aid.
Mom loves The PACE Place. She said she really enjoys meeting new friends, having people around in the same condition she is (and some are in worse shape than her, which makes her feel "fortunate".) I can't tell you what a difference this has made for mom. We were worried because she didn't want visitors and really could only talk on the phone if we answered it and took it to her. She played solitaire on her tablet and watched TV all day. It's been impressive to see her become more social, happier, and have her needs met.
Mom is on Medicare & Medicaid. Both programs fully fund her PACE bill, she can keep her social security disability check and that makes her happy as well. I would encourage you to see if you have a "The PACE Place" in your area (they are nationwide and growing right now). Check it out, see if you think it would be a good match for her. We started her on an abbreviated schedule and she has worked up to the 9 - 3 M-F.
See if it's an option for you, can't tell you what a tremendous turn-around she has made!
Good luck, CareGiverJrny, it's tough to find a plan of care that works for the patient and the family. You will figure it out.
He read during the day and watched TV in the evenings in his room . I would not force your Mom . Visit her in her room if that is where she wants to be. Watch a TV show with her , or look at old photos if she wants .
Their world gets very small and they become comfortable staying in their room . My FIL only came out for meals because he had to .
Sorry you all are going through so much .
She likes Gene Wilder, Cheech & Chong, Alfred Hitchcock.
My 94-yr old Mom uses my old iPad to play card and board games. I'm so glad I taught her how to use it many years ago... she spends hours doing it, more than she watches tv (which is usually "anger-tainment" news so I try to distract her with other options).
Have you talked to her about what she wants? It's surprising to me when I hear the family is to be the decision-maker about hospice. When my MIL went on hospice it seemed to me that the social worker was very careful to make sure it was what SHE wanted and that she was not being influenced by anyone else. Although in her case it was a definite change in direction for her care; she was receiving immunotherapy treatment for cancer and of course that was stopped. In your mother's case, there might not be a lot of difference between palliative care and hospice.
I'm so sorry you are suffering along with her in her decline. It's really hard when they seem to lose interest in everything, even being with their loved ones. But I suspect it's not that unusual. It's like she's between this world and the next.
Hope your day is going well.
To answer your question:
“Have you talked to her about what she wants?”
Yes, I talk to my mom. My mom wants to go. She expresses this daily. She wants to die at home. The house she currently resides in, where she was born and raised - the house my grandfather built in 1936. She wants to be cremated and buried in back. She does not want a funeral but a private ceremony for immediate family. She has a DNR.
when the hospice nurse came by to evaluate and talk with my mom, it was apparent to the nurse, mom was not present in the conversation. Due to the fact that I am MPOA, the nurse said I would have to make decision. My mom qualifies for hospice, the decision is mine to make but I want support from sibling.
When I look at other situations on this for am I consider myself fortunate. Mom does not have siblings I have to contend with, my sibling is several states away and let’s me make all decisions without question. At this point, Mom is compliant. In the beginning of taking care of her, I harbored resentment. Really observing her, I saw a broken her brain is. I had to forgive her and myself. Had to come to a place of acceptance- it’s given me peace.
Thank you-
My mom was depressed. Mom and I had discussions and she was not ready to go. Maybe if you talk your mom about what she has to live for, she may change her mind. My mom declined morphine for that reason. It took some emotional and physical “work” on Mom’s part to get better.
Your mom is certainly depressed. She has been through a lot physically and also emotionally. Anyone would feel down after going through all that.
Try simple and fun distractions. Maybe she would like to play solitaire in person.
Mix up her day with opportunities for distraction. Even a drive can lift her spirits if she is able. If she is not able to tolerate a drive, bring her “favorite things” to her.
Think 5 senses; music, aromatherapy, beautiful images, soft blankets and tastes of delicious foods.
We've been through a hospice "bounce" as well. I can't support your answer enough. It's amazing what depression will do to a person. Being unable to do the "basic" loves in life can zap the will to live. Mom was ready to die in the home she had been in since 1964 when she moved in with her mother and grandmother (who both also died in the house). She was ready to go, even looking forward to it and disappointed when she was released from Hospice. Finding acceptable substitutes for her former "basic" loves in life wasn't easy, but worth every bit.
Consider that
Sometimes it is the loving caregivers ( like yourself) who needs to see them more " active" than the patient needs it. Ones own anxiety over watching a loved ones decline can often lead to one trying " activities" vs simply being present with your loved one. Practice good self care, too.
Thanks for participating so fully in your question to the Forum. We were just discussing how rare it is to see our OPs return to comment. It is appeciated.
Hope you will stick around on the Forum. Your own life, and your articulate manner makes you of value in teaching and helping others.
The time to have built a good, healthy relationship with her was 50+ years ago--when she had the bandwidth to learn, to grow and be a better, not bitter, person.
Dh is trying so hard to 'teach' MIL skills to help her be happy. She can't even remember what day it is or what happened yesterday. Her memories are all from the 70's and 80's. She is angry one day, vicious and mean, and then the next day, she's calm and easier to deal with. He never knows who he's going to run into.
The frustration that he feels b/c he cannot make her 'better' before she dies is sad. He is trying to get her engaged in seeing people and having relationships. She wants her kids to take care of her and doesn't want any visitors--only accepting the Hospice caregivers because she HAS to in order to stay on Hospice.
It does go against our natures to think of someone dying 'all alone'--but in honestly, you have to respect people and their wishes. MIL doesn't want to see or talk to anyone. DH keeps trying to get our kids to take their kids up to visit grandma--and the ggrands don't even know she exists. It actually would be very upsetting and traumatic to the Ggrands, as they have never met her and why would they suddenly want to have a relationship with a woman they've never met, and who is mean and foul mouthed?
If she is content to play solitaire on her phone, let her. I wouldn't burn myself out trying to make her happy.
My mom was so tired at the very end of her life. She just wanted to take a nap. And she did--a permanent one. we were all so glad she went so peacefully--not kicking and screaming like my MIL is doing--taking everyone around her down into depression. We're still many many months away from MIL's demise and I think by the time she goes, there will not be one person who will grieve her. I think that is really, really sad. But it happens--a lot.
You are wise to accept that this is probably the slow decline to EOL. Just keep her comfortable and out of pain. That's the best thing you can do for her.
Many of us go this this - it is 'life.' The circle of life.
The word I zero in on is: PUSH.
This is / won't be useful or even possible. When you push, a person responds the opposite way - resists. You do not want this.
Find ways 'around' her feelings now (isolation, likely depression, feeling ready to go, and more). Be present with her.
While this may seem easy or simple.
It is very powerful.
Be with her where she is.
Do / Actively listen; offer reflective active listening.
Try massage (you and/or professionals)
Do check if medication (changes are) is needed.
Being present often means not doing 'much' actively. It is quiet - as much as power-full. She (needs to feel) or it would be a gift to her for HER TO KNOW that you understand how she feels. If depression is 'in the way,' do offer reflective listening while giving her a massage. A hand massage does wonders.
Even saying "yes, depression" is difficult. I understand. See if you can get her to talk about how she actually feels. Let her know she isn't alone.
Make connection(s) as you can. Do not (believe or think you can) push.
You cannot. Learn to LET GO. Tell her she can LET GO. Perhaps she is pushing, too. Tell her how it feels when YOU let go. Talk about this. It may give her a ... path ... a new place to go in herself. We all have our 'inner maps' - we just need to allow them into our consciousness.
Let us know things go. We are here for you.
Gena / Touch Matters