That’s great that the grandkids stay in touch
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According to my sister, my mother was quite upset when my immediate family and I went to Europe without her for a family thing. It was an event for one of my kids and she wanted to go, badly, but there was no way I would have wanted her along for that intense, busy, active trip. She was approaching 90.
A couple of years later sibling & I took my mother on a gentle version of that trip, she was a physical mess. There is no way in the world she could have done the prior trip. She loved the trip, in hindsight, talking about it, looking at photos, but she had a miserable time in many ways and it really required two functional adults to navigate the trip and mind her. However, throughout the trip she kept saying this would be her last time here, or last time there, so despite the fact that it was so difficult, she still was caught up in knowing it would be her last trek. I hope my mind stays sharp enough to allow me to gracefully let go of things like that. I do think all the things she said would have been appropriate to say to a peer- a sibling or friend, but she was the last of her generation and friends are harder to come by at that age.
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This thread is serving as a good reminder to travel when you are young enough to do so.
Do it now. Don’t put it off thinking “tomorrow” will come. Don’t wait for the “perfect” time.
Encourage your kids to do the same. If you want to travel there can be a lot of barriers–health, your partner’s health, political barriers.
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@compmom did you have your meeting? How did it go?
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My mother-in-law and her younger brother (they were the youngest two out of 13 - 8 girls and 5 boys) were the last. Their parents lived a full life - dad died at 74 in 1961, and mom died at age 83 in 1974. Their dad farmed but also had side businesses (small cheese factory, and he repaired farm implements/welding and such). Sisters all had long life - one died at 77 of massive heart attack, and one died at 89 after a series of heart attacks - but the other sisters lived from 92 - 96. MIL died a day before her 92nd birthday (2021), and her younger brother died at age 89, 13 days after her death (he had cancer and other medical issues). Almost all the sisters had heart issues causing their death; MIL had hypertensive heart disease. When it got down to the last of them, MIL said she didn’t want to be the last one living - they already had lost so many of their friends over those last 10/15 years. The oldest was born in 1914 and she died at age 93 in 2008.
The sister that died after a series of heart attacks, had a MD appointment the day she had a heart attack - full symptoms – talked to MIL - MIL said you have to call an ambulance! Her sister (who lives two blocks from MD’s office in a small town), was thinking of waiting…Yikes!..and I guess she needed MIL’s push.
The meeting was a little frustrating but making some progress on a few fronts.
No more Ativan, and we will try Gabepntin low dose only twice a day to start. My brother is concerned about phone calls as a sign of anxiety but honestly I think she is lonely and bored, bedbound with dementia is tough. So I did voice some feelings about overmedicating a situation versus trying to improve the situation.
In that vein, I wrote all three administrators and requested that, given her 7 years in this facility and current state,my mother be prioritized for the memory care unit upstairs. It is cozy and you get a lot more attention, more company etc. I also asked my brother to write since in my experience males are taken more seriously (!). One of the administrators just told me she is first on the waiting list. Yay!
I woke up determined to get an apartment with her but the obstacles are daunting. This 10 person unit would be very helpful.
Last night at 7 one of the nurses here did a video of my mother coming out into the hallway looking for me. She was pale, breathless, confused. I have show this to the hospice nurse and the administrator and sent to my brothers. Truly pathetic.
The chaplain who visited her yesterday afternoon tested positive right afterward. Great.
Thanks for asking!
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Glad you had a meeting. I did not realize you had a memory care unit on the premises. My widowed mother in law moved into independent living in a CCRC at 81, transitioned to assisted living at around 85, then was in the locked memory care unit for about 3 years until she died at almost 92. The facility was insistent that she move to memory care and it was a good move. Much more support . It was of course , sad, to see the endings for some people there. There was a communal area so you met other residents, families. Very accomplished people among her small group (former psychiatrist, former college professor, etc). But, It may be a good move for your mom and for you. Good luck with the waiting list!
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@sevmom I have been requesting memory care here for my mother for years. Always a no. I was moving her to an all memory care facility in ealry 2020 but COVID interfered. This place reserves the few spaces for those who wander, fall or pester staff. I do think my mother has become burdensome for the staff at this point.
Sounds like your mother will move as soon as a bed opens up in the memory care unit. That will be an improvement. You have needed to sound the alarm with the caregiving ‘team’. They finally are being more fully receptive!
Medication is such a delicate balance. I agree that you don’t want to overmedicate a person. I do recall at times that my dad was so agitated and upset due to his memory loss, that sometimes I looked at it as a blessing that they could give him Ativan or whatever Rx they were using. I don’t think the MC abused it because they had to call me every time they gave it.
It’s a kind of “lesser of 2 evils” situation at times. So many days I would get in my car and cry, because this was just such a painful situation for everyone and I hated seeing my parents so compromised. But there was no real better alternative. I feel for you.
The psych. facility that my mother was in a few years ago gave her Gabapentin and Lexapro. I looked up effects on dementia and Gabapentin reduced anxiety in one study with no effect on the Mini Mental Status Exam. I brought this idea to the meeting with my brother and hospice nurse and social worker earlier in the week.
The Gabapentin does seem to be calming her a bit, with a gap in coverage around 2-8pm. I have had some pretty good conversations with her and calls are a little fewer. I think she needs it three times/day instead of two and am going to ask for 6am, 1pm, and 8pm. Facility isn’t very precise on times but that might be the ideal to cover her.
She lies in bed, looks out the window, and says she is sleeping and thinking and seems more relaxed- until those afternoon hours when the calls pick up. My brother and I both spent time in there during those hours of obsessing about where she lives etc.
The memory care unit does not have anyone who is bed bound. I asked staff about what goes on. The focus for staff is getting people up and dressed, to communal meals, and the activity room. It is a very small community with mixed abilities. My mother would fit right in and ordinarlly benefit (I have been asking for years) but now that she is bed bound I am having doubts.
I requested anemia, iron and kidney tests to see where her health is. If anemia is bad, she is truly terminal and can stay in bed, not eat, whatever the heck she wants. If it has improved- unlikely- she can move. If it is the same and stable, not sure what to think but will figure it out!
Info for others: hospice has consistently said no to those blood tests. But I know they are covered by regular insurance and are okay if not related to hospice diagnosis. I happened to talk to a supervisor at hospice and she said to just call the PCP directly. I did that and explained that knowing her hemoglobin etc.would help us with decisions and “see the landscape ahead.” Tests will be done Monday. So if Hospice tells you no, you do have a right to tests like that through regular Medicare even when a person’s hospice diagnosis is covered by Hospice Medicare. I called hospice nurse to say I did not want to step on any toes and the supervisor had called me- the chaplain who visited was positive for COVID. I don’t need the regular nurse to feel I go behind her back. ( Testing my mother every day after exposure.)
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You deserve a medal. Standing ovation! No matter the outcome I don’t think anyone could ask for more.
It is incredibly difficult to keep going sometimes just from being tired of “fighting” (for lack of a better word) the system and rules and doctors, etc. Plus any blow back from family members who are second guessing decisions (not saying this applies to you). Decisions just fall on your shoulders and it’s heavy.
The thing that kept me going sometimes was I couldn’t think of ANYONE who knew my loved one better than me (and my sister). I (and dad) was very fortunate to have his doc who really listened to concerns of ours. I do have a medical background which I think makes this easier (or harder) in some ways. I knew the system very well and could push more easily than others might be able to. LOL–I also knew who to sweet talk…
When all is said and done you’ll still be wondering “what could I have done better?” Nothing. Sometimes life takes over and takes decisions out of your hands. Tons of hugs.
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The fear of stepping on toes gets so old, with my son and dad! It’s not my fault people don’t do their jobs or give me incorrect information! I don’t worry as much about it anymore.
I don’t avoid doing the right things for fear of “stepping on toes,” but it helps working relationships to be transparent with those involved daily when I essentially go over their heads.
There is so much negligence built into the system that we have to take action, but I don’t necessarily blame the people who are part of that system.
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Good points.
You are a gift to your mother, @compmom. Always so thoughtful. It sounds useful to get those tests. In case it’s relevant to others, both of my parents were on hospice care and we were told that they could unenroll from hospice if we felt a particular test was necessary and then quickly re-enroll. Did it once and coordinated directly with hospice. Sometimes you need to know exactly what “time” it is. I could not agree more with keeping constructive relationships going. I did ask for a change in hospice nurse once, which worked out better for parent. Just wasn’t a fit.
Re: memory care- moved father from AL to SNF level memory care with a range of challenges present in that community. The AL care was exceptional and offered more nursing services than most ALs. The memory care unit’s staff seemed to have an extra bit of patience and finesse with the residents. They had clear expertise in keeping folks as calm and engaged as possible, even in the final phases. Because it was SNF level care, the expectation was to manage all personal and medical needs as well. Not all memory care is skilled nursing level care and the nomenclature can be confusing.
Our AL’s memory care is definitely not a SNF. If she cannot stay in bed, it won’t work.
I did take my mother off hospice so that a large hematoma on her forehead could be lanced and they also did a CT scan. The lancing could qualify as “comfort-related” but not the CT. It was after a bad fall. I didn’t care about the CT but the MD was clearly feeling negligent without it given the look of her head and I just put her back on hospice the next day.
This time, I just got the blood tests covered by regular Medicare. I wonder if I could have done the same with the hematoma and CT.
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Mom had a yearly pcp checkup yesterday, and I read her doctor notes to discover that she has a new medicine – a muscle relaxant (likely for her back) that causes “dizziness and confusion” . Called preferred sibling, who called Mom to tell her not to start taking it in the morning before she drives.
PCP wants it 3x/day!!
She just wanted to know how we all knew already and sibling told her it was payback for the years she was best friends with our school’s principal.
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I have a prescription for a muscle relaxant that says the same thing- three times/day. I cannot tolerate even one. Instead, I take 1/2 pill and only when absolutely needed. Often Ben Gay does the trick without side effects. And spasms can improve by pressing on pressure points, doing tai chi, other modalities.
For older people, some of these kinds of meds can exacerbate memory and other cognitive issues. Doctors prescribe them a lot.
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Compmom, my late stage Alzheimer’s dad is in a Skilled Memory Care Facility. He started on Seraquel and Depakote for behavior issues (he fought when he needed his depends changed or when they tried to give him a shower). The first week he declined- he needed a wheelchair, could barely hold his head up, and he seemed to be hallucinating. Today he woke up, walked with his walker, ate 3 meals, and showered with assistance. He actually said “I feel good today, what did you give me?”, hugged the aide, and thanked her for all she does for him. He hasn’t been that clear in over a year. The aide said many late stage Alzheimer’s patients have “moments of clarity” like this. Hospice has been really helpful in finding the right meds for him. P.S. I really appreciate the stories you share about your mom. It has been such a help to me for so many reasons!
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