I am flabbergasted by my SIL and her H. I am grateful that they are doing the hard work of helping with MIL. But OMG - how these two human beings have been able to survive as adults, much less raise a son (who turned out fine), I just don’t understand. There are far too many things that blew my mind over the past week to even begin explaining here. Just wow.
I’m glad we moved MIL closer to their house. I’m glad we are hiring someone to provide additional assistance to MIL to give SIL & her H a break. And I’m glad I was able to keep myself from smacking them upside the head on multiple occasions this past week.
As for MIL, she moved on Saturday. She slept through both Saturday and Sunday. On Monday, she was dressed when we arrived - that was huge. We got her to go to the dining room for lunch and dinner. H spied on her, and he was happy to hear her laughing with her table mates. She stayed up until we left at 8. Tuesday was absolutely horrible. She was like a whiny two year old. Wednesday, she slept on and off, whining a bit when she was awake. Then she woke up around 5:30 and watched game shows with us. She answered questions easily and correctly - including solving Wheel puzzles and asking correct Jeopardy questions. Go figure.
We came home today. SIL didn’t go see her, because she went to her son’s house. The staff tried to get MIL to attend the holiday party at the AL today, but it sounds like she chose to stay in her room. Oh, well. Hopefully, MIL is content.
Thanks for asking… It’s going okay, is about all I can say. Mom is so weak and the smallest tasks leave her sooooo out of breath. But she still wants to be herself. Had the initial hospice visit and the social worker is coming tomorrow. There were some signs today that Mom is slowly internalizing the prognosis, which I think is good, in a way.
Her existing aide and I are sharing caregiving duties, with her here 30 daytime hours over 5 days and me handling the rest. So I’m not sleeping at my house but I can get over there for most of the days when the aide is here. I’m pretty exhausted…Hard to tell if I’m just missing my bed, or if it’s all that’s going on PLUS still recovering from covid. Thankfully, H is truly a saint.
Some of us older parents on this thread will have situations where a sibling or a friend has an older spouse who is almost like caring for a parent. Good friend from middle school on was married to a man almost 10 years older than her. He had a rare form of lymphoma (5,000 cases in the US), and his primary oncologist MD at Mayo only treats lymphomas (in retirement they moved to MN and are not too far from Rochester MN). It turns out his form of lymphoma goes to the lung, and treatment essentially is concentrated on the lungs. Since he did not respond to chemo or immuno-drugs available, and the tiny tumors were essentially throughout his lungs, he was in stage IV disease w/o much time. He wanted to die at home, but he was too much to manage even with daily hospice nursing visits – wife got no real period of sleep, and soon would not be able have only one person assist. Did agree to go to inpatient hospice care. He plateaued twice, outliving what hospice thought he would (confidential to the wife).
My 70 YO sister has been married for 45 years to now turning 87 YO husband. She is super active and is essentially caring for her old man DH. Very evident in last couple of years, but sister has always been the doer in their household. For many years w/o dishwasher, he did help by drying the dishes (she finally had her kitchen remodeled after a lot of planning on her part and resistance from him). Theirs sons are 38 and 42 and sons/families live not too far away. She now has been able to do a little distance travel w/o him - announced what she wanted for her 70th birthday (to visit distant relatives/friends, gone for 2 weeks, international travel); she lined up the help to come in for her husband and his aged cat while both sons did arrange to stay with their dad each for 3 days (and worked remote some of that time). At most recent family gathering (where sister does all the cleaning, meals, etc.) to celebrate birthdays and Easter, sister announced that she is making an annual two week trip like she most recently did (she has been auditing local college German classes and meets up weekly with a local gal to specifically speak German). Of course, she will cancel a trip if her DH’s health would not allow her to get away, but she finally is carving out some boundaries. Sister actually lived abroad for a year with relatives right after college, and renewed her connections when she made a 2 week trip with me June 2016 (I was gone for a month, but she was restricted to 2 weeks to appease her DH). When she had her 50 year high school reunion, she prepared her DH for 3 years that she would be gone for 3 days (she was active on the reunion committee). She called him and he begged her to return after day 2 (she did not return until planned). This BIL was only 3 years younger than our mother (and 5 years younger than our father) - and he was very controlling and territorial (and negative to sis and my parents). My DH cannot stand this BIL because of how he treated my parents.
Well, H is 15 years older than I but fortunately at this time very spry and functioning great! I could see either of us having to care for the other. I could also see us having to hire help to come in and do more—yard work, repairs, making some meals, etc as we age.
I’m glad my husband is in amazing shape at 70. He doesn’t have great genes, longevity wise, but he also takes much better care of himself than his ancestors did.
My dad has been in a rehab facility for awhile now. It’s the same one he was in about five years ago that screwed up badly on the overnight shift and he almost died. Sure enough, he’s discovering the same issues this time - they just refuse to “bother” the on-call doctor, even when there’s a problem. Ugh. He said he will never stay at this place again.
My sister had to find a new caretaker for him since he will need help for a bigger part of the day now. She thinks she’s found a good one - the references were excellent.
The hurricane is bearing down on Dad’s condo in Corpus Christi, Texas. Ugh. My sister has said she would like it as part of her inheritance and that’s fine with me! The last hurricane cost Dad a LOT - the condo association sued the insurance company, but they didn’t get reimbursed for a lot of what they had spent.
DH had a protracted 18 months where dr.s thought he might have ALS; I have been away helping with my folks and both experiences impressed upon us how we need to acquire life skills. So I learned a lot about driving alone, cars, breaker boxes, water softeners, lawn mowers…and he in turn has picked up better grocery, yard, appointments and food prep skills. Together, we decided to rip out landscaping that’s beautiful but requires care, and replaced it with no muss, no fuss stuff. (I miss my gardens, but it was necessary!)
Tough weekend. Saturday mom had a pretty rapid decline and slept almost all of the day. This morning she was pretty chipper for a couple hours then declined again. I know that’s too be expected but it doesn’t make it any easier.
The biggest challenge I’m having these days is her getting up out of bed during the night without asking for assistance. She’s just too out of it to even realize. This morning at 4 I heard her(luckily) and found her a couple steps toward the bathroom… Out of breath and strength. So I had to lower her to the floor… And call H to come lift her in bed (our house is just a couple miles away). Tonight I put up a rail to prevent that. And Depends. I feel so guilty. She’s not very lucid at all… But she understands the indignity of that. And hates this whole thing. Ugh.
Have you considered a bed alarm pad? That would alert you if she tried to get out of bed alone. Not great for you in terms of sleep but it may help in terms of safety.
(My mom tried to climb over the bed rail or would scoot to the end of the bed to get up).
My mom swears by the extra strength overnight Depends; when my dad was still at home we installed a motion activated light in their bedroom which at least helped navigate.
I am so sorry this is happening. You are trying so hard!
My MIL has been wearing Depends for a couple years, first at night & now all the time. There was a lot more indignity involved before she started wearing them.
I am hoping someone here has a suggestion for me. Mom is 93 and moved to an independent living apartment earlier this year. Her younger friend who is 90, loves to participate in activities there, and always tries to get mom to join. She has been going to a few, with Wednesday being a long day; starts with happy hour at 3:00, then dinner at 5:00, followed by bingo at 7:00.
Mom’s problem is her neck. I have noticed over the last couple of years her head falls forwards, and if she is not at her apartment laying back on her sofa pillows, he neck is very sore and uncomfortable. While she enjoys the Wednesday activities, she is hesitant to go due to the pain. Even being in bed, she sleeps prompted up on 2 pillows can be uncomfortable for her.
I think she would be more involved if sitting or standing didn’t bother her so much. She was suppose to ask her PCP when there last week, but didn’t. I don’t know it PT would help at this age, or if she would even go if she had an order. We talked about her trying to sit up straighter, but she says when she pulls her head back, it hurts. By the end of the night if she hangs out after dinner, she says she has trouble even pulling her shirt off over her head.
I am happy to take her to the orthopedist for a evaluation if needed, just not sure if it would help. Even if degenerated disk disease, we aren’t doing anything evasive about it. She doesn’t have the humped back, just hangs her head forward.
There must be some “device/medical equipment” that would provide some neck support and could perhaps be partially hidden by her clothes. But I would think a PT would be the most knowledgeable person about something like that - and for her personal situation and needs. And they would be able to fit it right.
I would provide your written information to her PCP and see if he wants to have her go for further medical evaluation. Did she say all was ‘fine’ when she went to her PCP? Certainly your description and her saying that she has trouble even pulling her shirt off after these few hours of sitting because of neck pain - this has not happened overnight. Progressing for many years. Has her PCP been the same? Sounds like your mom lies down a lot due to her neck.
Yes, this has been progressing over the last few years. Mom said she has talked to the PCP in the past, but not sure she has. The problem with mom is she will complain about it, but isn’t willing to do anything about it.
I gave her a neck brace a year or so ago, and she said it was uncomfortable and threw her chin back. I have looked to see if I could find something narrower, just enough to support her neck a little, but she currently is also not willing to try; might order from Amazon anyway. She said she will not be able to eat while wearing it, but I think it is more about her appearance. If she doesn’t try it, even in the privacy of her apartment, how would be know?
My husband has a bad neck, he had surgery, a Discectomy maybe 10 years ago.
He helped a lot but he still suffers with neck pain.
All that to say that wearing a cervical collar does help and after he got used to it, it was comfortable. He doesn’t wear it anymore but did for a few years after the surgery and only at night.
My husband is not a vain person, my mother is and would not wear anything that she might think would look weird. Not sure where your mother falls. Edited to say that your mother falls in the same place as mine.
After the first collar, I bought all the collars and all the supplies off eBay and Amazon.
I am friends with a couple in their 90’s. H was an orthodontist. He is very physically fit and moves around great, still drives, etc. But, his neck hangs forward- he says probably from what he did for a living. He gets a weekly massage and said it helps him immensely.
My father (who died at 93) had a similar problem with his neck. Over time, his chin rested on his chest and in addition to looking down, swallowing without aspirating his food became a challenge. (He had a neck injury in his 40s, severe memory loss and was past the point of navigating PT.)
Your mother’s medical professionals can recommend how to assess and address this problem. My father eventually participated in a swallowing test to determine the most difficult foods for him so that they could be avoided. There may be multiple causations for this problem and while major interventions may be off the table due to age/health considerations, understanding why and perhaps engaging in PT for help finding the best way to support the neck, strengthen it or reduce pain could be worthwhile. It may also be that 3 back to back activities is too much. All the best with this.
