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.

UPDATE: Thank you for your insights and advice. Not going to push social activities on mom. Did find something she likes - I put on a movie from her early years and eat dinner with her. I’ll just appreciate the time I have with her.

She likes Gene Wilder, Cheech & Chong, Alfred Hitchcock.
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Reply to CareGiverJrny
Geaton777 Jan 17, 2024
CareGiverJrny, I had an Aunt with advanced dementia and she loved watching certain DVDs over and over. Over time, it became clear that if there was any negative, dark, violent or scary content at all (even in animated movies) this would agitate her quite a bit. Towards the end of her life she watched Disney, Pixar and Dreamworks animated movies, and a handful of old musicals. We put the closed caption on and she would read along the entire movie. We also had her fold stacks of kitche towels and sort plastic utensils. This helped her burn mental and physical energy and she slept a lot better once we started this. Nothing she did could be done "wrong", even whatever card or board games we played. She read aloud to us from her favorite books when asked. You'll figure out what works with your Mom, just keep trying different things. They just won't be the things you think she should do ;-)

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).
I hope she gets to do just exactly as she wants as she lives out the rest of her life.

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.
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Reply to Fawnby
CareGiverJrny Jan 13, 2024
Thank you for your words.
I was there with my wife it all started with a broken hip but Ended 3 years later of unrelated issues. What I learned is you can not force rehab on someone it is either in their nature to fight or it isn’t. The best thing to do is to enjoy the time you have and tell them what is in your heart because you will never get another chance
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Reply to Sample

My mom had a hospice “bounce” - she recovered contrary to medical predictions and came off home hospice. Don’t listen to everything the doctors tell you, if I would have, we would have lost out on precious time together.

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.
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Reply to ACaringDaughter
caring4kin Jan 18, 2024

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.
I would not.
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.
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Reply to AlvaDeer
CareGiverJrny Jan 13, 2024
Thank you. It’s terrible to see your loved one decline from an active, vibrant person to a shell of their former selves.
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What was no longer is, unfortunately. Let your mother live what's left of her life the way SHE sees fit w/o pushing your wishes on her. Her health is such that she's unable to do much, and that's okay, imo.

This is a tough position to be in and I sympathize with you. Wishing you the best of luck with a difficult situation.
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Reply to lealonnie1
CareGiverJrny Jan 13, 2024
Thank you
No, let her be. She's 83. In some families that is good longevity. You aren't responsible for her happiness. Don't project your expectations for her senior years onto her. Everything about dementia is hard. It sucks. you're doing the best you can for her. May you be blessed for it!
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Reply to Geaton777
CareGiverJrny Jan 13, 2024
Thank you.

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.
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Reply to caring4kin
Tynagh Jan 16, 2024
The only problem is that many programs, such as the one you described, are only open to pts. on Medicaid. There's no option for self-pay. So those of us in the middle ground without great wealth just endure with no respite and little hope.
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Watching my DH try to push his mother into conversations and such is the saddest thing I've even witnessed.

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.
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Reply to Midkid58

You certainly may be watching / observing the slow decline of living.
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
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