My mother beat him with her fists at other times. Beat him with an umbrella once while waiting in a doctor’s office, and were told never ever to return there. She left her handprint on my brother and me too many times to count—until I got strong enough and my arms were long enough so that I could hold her off.
That’s beyond frustration and into abuse territory. I hope you have recovered from those times.
–Peter
My stepmother used to push me around. She never abused me. But she tried to intimidate me. One day I realized I was bigger than her, so when she tried to poke-poke my chest while yelling at me, I didn’t budge. Leaned into. I was maybe 15. She never lost her cool with me again, or at least she didn’t try to push me.
Never said a word. I think she realized that I was now bigger and stronger than her, and she was only still standing because I chose to allow it.
Sorry about your parents. I’m surprised the doctor’s office didn’t call the cops. That’s spousal abuse.
Remove them how? You said he can’t figure things out anymore.
Though going through the leg hole I can’t help you with. Maybe get rubber pants like they used to use with old fashioned diapers? Put suspenders on those…
That’s beyond frustration and into abuse territory. I hope you have recovered from those times.
Yeah—abuse territory for sure. She has serious issues with anger and control. And she was very good at demanding, but could not give—other than abusive verbal and physical punishment. She gave praise only when she felt that my or my brother’s accomplishments would make her look good to others who knew us. You can’t escape scars, but with some very valuable therapy I was able to develop a realistic understanding of my past and present, and was able to put it pretty much behind me. And I’ve grown in a very different direction.
What also helped with a kind of closure was an epiphany my mother had experienced 2 weeks before she died. It was just before her 82nd birthday, and I was 56. She had been in the hospital, and it was determined that she needed a mitral valve replacement in her heart. After she’d been in the hospital for about a week, she decided to go ahead with the surgery and it was scheduled for Tuesday of the following week. I’d been visiting friends in SF when she was first hospitalized in serious condition, and once surgery was decided upon I cancelled my remaining plans and flew back to NYC. When I visited her in the hospital the day after I had arrived home, her face had changed. It was softer, happier, prettier, younger. And she was nice with the nurses and aides, not snappy and resentful. As we talked, she told me that she had come to realize that the people she loved most in the world—me, my brother, my father—were the ones she had been unable, all these many decades, to show love. And instead she had treated us all so unfairly and hurtfully…and had never once said that she was sorry. And she apologized to me then—for the very first time ever. She survived the surgery initially, but the Sunday following it, just after she was moved from the surgical stepdown unit to her own room, and my dad was going to be brought in to see her the next day, her heart burst and she died. And I had loving things to say about her at her funeral, because she had shown me this kind and loving side of herself before she died.
=sheila
Sorry about your parents. I’m surprised the doctor’s office didn’t call the cops. That’s spousal abuse.
It was. And I’m surprised too!
=sheila
And I had loving things to say about her at her funeral, because she had shown me this kind and loving side of herself before she died.
While I wouldn’t wish your experience on anyone, how wonderful that she was able to recognize her failings and apologize. I trust that was a part of your recovery and healing process.
–Peter
Remove them how? You said he can’t figure things out anymore.
AFAIK he’s never worn suspenders in his life. I’m certain he’d pull them off his shoulders even before he needed to pee. If someone would give me free suspenders, I’d try them. But I’ve already spent too much trying things that don’t work out. I’ve got to guard every penny now.
Though going through the leg hole I can’t help you with. Maybe get rubber pants like they used to use with old fashioned diapers? Put suspenders on those…
I’m not comfortable forcing him into peeing in his Depends and upsetting him.
Got a text from Krystal, my Friday aide. Not feeling well this morning and not coming today. Neither Rhonda nor Shaina can come in her place. Luckily, to give everyone Memorial Day off, I arranged for Shaina to come tomorrow (Saturday) [on alternate weekends her ex has the kids so she can work Saturdays]]. It’s now too difficult for me to be on my lonesome w/the hubster 3 full days & nights in a row. 2 is tough enough. Although last night was pretty good. First he went to sleep on the dining room floor about 6pm. I checked on him often–once he had moved to the den floor. About 7:50 I was able to persuade him to come to bed. I tried toileting him first, but nyet. He slapt until almost 3am(!), when he got up to pee (in the commode bucket, which I was holding), and has been sleeping ever since. I put the 3x5 waterproof flannel pad on top of him and it’s still there.
ASIDE
Rhonda is giving Wednesdays to my brother as well as Mon/Tue (depedning on which day he has PT) and giving her Wednesday client to Krystal, so in future Krystal is only coming on Fridays. Shaina is coming Tues,Wed, Thu. But Rhonda is not coming to me at all in June (she normally comes MOndays). So I will have Shaina Monday through Thursday. She’s the best at getting DH showered and tooth-brushed. The worst (after me-) at getting him shaved. I will miss Krystal 2 days a week as she;s the best at taking him for a walk and actually playing with him (games, cards, puzzles).
I think RHonda doesn’t want to take care of the hubster any more. She’s in her 50s and not used to uncooperative clients (although she’;s taken care of very disabled clients, eg, ALS patients). I’m a bit miffed as I just paid her last month for the 2 weeks she missed because I had covid and then DH did. I also started paying for her vacation days a few months after she started. Not sure I want to make that “mistake” again 
and actually playing with him (games, cards, puzzles).
I assume it’s kind of playing at playing, as the picture you give is that he no longer comprehends rules etc. Are you able to do this with him as well?
=sheila
I think RHonda doesn’t want to take care of the hubster any more
Just when the aides situation had seemed to fall into place and give you the daily time you need for your errands and self-care! So now you have to search for someone to replace Rhonda?
=sheila
Not really, no. And I’m tired of doing puzzles and playing with cards & toys with a running commentary while he watches–which Krystal does. I like doing jigsaw puzzles and playing Sudoku/Wordle/Quordle/Wordplay/solitaire online in the comfort of my recliner rather than stressing my back, neck and shoulders playing in a straight-backed chair at a table. Not to mention that patience, alas, is not one of my virtues(!). And my bad leg/ankle is far more comfortable elevated, like in the recliner.
My new dishwasher is being installed right now. It’s purrrty! I like the way the handle reflects my drawer pulls.
So now you have to search for someone to replace Rhonda?
No. Shaina is picking up Rhonda’s Mondays in June. AFAIK RHonda’s back in July. We’ll see. So next month, Shaina M-Th and Krystal on Fri. And once Shaina’s youngest is in camp, she can stay later if I wish. Also she can come every other Saturday if I wish.
I’m tired of doing puzzles and playing with cards & toys with a running commentary while he watches–which Krystal does.
I didn’t realize that’s what you meant when you said she’s so good at playing games with him. Not that I thought it was actually playing an authentic game, but I got the (mis)impression that she was able to get him to interact in some way, and that he enjoyed it. So she basically puts on a performance that he enjoys watching.
=sheila
He’s never been interested in games, not even computer games. When we visited his parents, his mom, me and the kids would play Uno, but he and his father didn’t join in. His idea of fun was building something (whether computer code or something “visible”), socializing, sailing, eating out, travel, nature walks, solving problems (not every kind, but things like plumbing problems).
I’m wondering - would he enjoy sitting at the table with a box of crayons and a ream of paper? How about legos, the large ones meant for toddlers. Or a set of blocks. How about Sesame Street or cartoons on television? Or nature videos about animals? Does he like animals? Perhaps you can “borrow” a neighbor’s cat or dog for an hour now and then?
Does he like music? Your local library probably has lots of videos of musical comedies. He might enjoy My Fair Lady or The King and I. Or maybe Fred and Ginger? Find them on YouTube.
For physical “activity” how about a kiddie pool in the backyard? Or even a tub of water and a toy boat or two?
Managing him seems to have become more difficult in the past few months, and all your friends here at TMF are worried about YOU more than him. His deterioration seems to be accelerating. I wonder if he would qualify for hospice? If so, there are services and even equipment that Medicare covers. When my mother qualified for hospice, a visiting nurse came to the house on a regular basis, and a physical therapist as well, for a while. Medicare provided a wheel chair, a hospital bed, and other equipment. I believe a social worker also visited us and provided a lot of good information on what was available, and lots of good suggestions about how to manage my mothers care. Of course that was twenty years ago - maybe such help is no longer available.
Take care of yourself Alstro.
Trini
Thx for thinking hard about this! I appreciate your effort.
I’m wondering - would he enjoy sitting at the table with a box of crayons and a ream of paper?
He’s never been into creating art, not for the 4 decades I’ve known him. I tried coloring stuff a few years ago when he was more cognizant, but no. He will watch the grandchildren use are supplies for a few minutes, but that’s as close as he comes. He used to build models, but gave up a few years ago when he could no longer understand the instructions and had lost his instincts on how things go together. He can’t even fold washcloths any more (a very recent skill loss).
How about legos, the large ones meant for toddlers.
I have those–and No.
Or a set of blocks.
Don’t have those, but I doubt it. He sometimes fiddles with real items (bedding, dishes, papers, boxes with stuff in them, his old flute), but can’t do anything sensible with them or even entertain himself very long any more.
He used to help me do simple jigsaw puzzles, but now he can’t even put in the last piece.
How about Sesame Street or cartoons on television? Or nature videos about animals?
He’s never been much into cartoons–although he did like Wallace and Gromit. We have their DVDs. Used to enjoy nature shows, but tv/computer screens don’t hold his attention any more.
Does he like animals?
He used to love dogs & cats–used to go up to all dogs on walks to pet them. He ignores animals and people now, unless the people come right up to him and talk to him/touch him.
Perhaps you can “borrow” a neighbor’s cat or dog for an hour now and then?
No, thanks! I’m a cat person, but allergic to them. Not keen on dogs, actually. They usually smell bad to me, and I cringe when they lick me. I prefer wildlife–especially birds. He doesn’t notice things that aren;t oretty muuch in his face any more.
Does he like music?
He used to. He’s been a conductor of classical music, opera, and musicals. He ignores music now. He hasn’t recognized music he’s played or conducted for around a year now. I’m not sure he can hear it, or hear it well, any more. Sound doesn’t get his attention. His rare form of dementia starts with language processing going south. Perhaps it affects all sound processing now.
Your local library probably has lots of videos of musical comedies. He might enjoy My Fair Lady or The King and I. Or maybe Fred and Ginger? Find them on YouTube.
He’s never been interested in watching that stuff (unlike me!), sorry. He was hired to conduct a musical, but I honestly can no longer remember which musical it was (maybe dementia is contagious?!). Maybe Sound of Music? He also conducted Carmen and Show Boat. He was a wonderful conductor.
For physical “activity” how about a kiddie pool in the backyard?
I don’t have a real backyard. It’s quite small and filled with trees, vines, shrubs, perennials & a small patio–no lawn.
Or even a tub of water and a toy boat or two?
He won’t get into water in the tub–one of the aides tried a couple of weeks ago as a shower alternative.
He has advanced dementia. He’s beyond this stuff. His brain is very atrophied.
He spent most of his awake time today sitting or lying on different places on the floor, following the wood grain and grout lines with his eyes and fingers. Eventually he knelt, opened his shorts & Depends from the bottom and peed on the floor, then started to slosh his hands in it It took multiple tries for me to get his pissy shorts off. I did wipe up the pee and mop the area and washed his hands with a wash cloth. He’s now sleeping on the floor, with his head mere inches from a plush rug–he hasn’t even the brains to put his head on a sofa pillow or the soft rug. He took his clean shorts off, too.
I don’t know why, but your retelling of an ordinary day for you is making me sad for you. So many good times lost to this dementia. Such effort put into a loved one that is no longer capable of understanding all that you do for him. It’s just overwhelming.
–Peter
Trini ~
Thank you for your thoughtful post. Alstro has inquired about Hospice but I believe she thinks he doesn’t qualify because, physically, he is in good health.
Hospice sure is available and many folks who receive their services graduate out if there is improvement. People automatically assume that you must be near death to get this help but that is not the case. My sister, and dad, were in charge of my mother during her last few months of life but they didn’t want to use Hospice … if was more about my sister not facing the facts of my mother’s health. My sister kept insisting that she would get better if only everything that could be done, was. Even when my mom suffered because of so many things being done when she just wanted to die in peace.
I used hospice for my husband and they were so wonderful and helpful. They kept me calmer by explaining the dying process so I wouldn’t be alarmed.
I had flown out to take care of my dad when I learned that my husband had another Cancer setback. I flew him out to California and cared for both at the same time. My husband died about 7 weeks after he arrived in California. A little over 5 years later I used Hospice for my dad under much protest from my sister. He didn’t want every little thing to be done and had filled out the paperwork with his primary care physician even before I came to care for him. I tried to contact my sister when I could tell Dad was nearing the end but she didn’t answer her cell and her mailbox was full so I called her husband and his work. He said Michele would come that night but I told him he needed to go home to pick her up and that he should drive down to my dad’s house. Thankfully, they arrived about 15 minutes before he died.
I am very grateful to Hospice for all their care and confidence that I would be able to handle death.
Robyn
I’m wondering - would he enjoy sitting at the table with a box of crayons and a ream of paper?
He’s never been into creating art, not for the 4 decades I’ve known him. I tried coloring stuff a few years ago when he was more cognizant, but no.
But he’s not cognizant now, and this wouldn’t be a goal of creating art. He might be fascinated with the transfer of color from crayon to paper. The way he becomes fascinated with the bedcovers, he might become fascinated with using crayons. The one downside I can see is that if he does become intrigued with placing colors on other surfaces, there’s nothing to limit him to using paper. I can see him using the walls and furniture. It’s like a little kid in loe with crayons and markers, and sees no difference between paper, walls, furniture… My daughter was one of those kids.
Of course, if that does happen, you remove the crayons after the first incident.
=sheila
In order to qualify for hospice, a doctor needs to aver that the patient is terminal within 6 months. (Of course, they do err sometimes.) I asked the neurologist when I first met him to let me know when that’s the case with the hubster. I’ll remind him at DH’s appt next week (he’s seen by his neurologist 3x/yr). I’m not doing (much of) anything to extend his life, just treating to make him as comfortable, content and manageable as possible.
I have no objection to hospice. I note that PPA isn’t ALZ. I also note that DH still has a robust immune system.
My father lasted about 6 weeks on hospice (at home) when he decided not to get chemo/radiation for cancer at age 87.