@Youdon_tsay do they have Palliative Care or a Bridge to Hospice type program to get her acquainted with the professionals and make transition to hospice easier?
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The nursing facility called today to say that my father was seen by a doctor and prescribed something for his dementia. They did say they reviewed all his medication to make sure this would not conflict with anything else he was taking. (I did not catch the name of the drug - I donāt know the names of any of his medications)
I am curious what med it is! We were told there was medicine to slow progression in early dementia but once it had progressed the side effects werenāt worth it. Maybe there has been progress on this front!
I googled dementia drugs and this seemed to match what the nurse said - Namenda- memantine. I think my father has become very difficult for them to deal with and it is probably worth the side effects at this point (and at his age 92). It was prescribed by a psychiatric doctor of some sort. All these years, despite depression during COVID etc., my father has always refused to talk to any psychiatric professional. I assume they didnāt even ask him this time (they know that he is not competent enough to make any of his own decisions).
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Absolutely. And my father, who was conscious in a hospice bed in the hospital, waited for me to leave before he died.
@compmom, for sure it takes time, often lots of time, to see things in perspective. For me, just about two years.
So sorry, @deb922. I am sure it doesnāt help much to say āme tooā but me too! Not wanting to be treated poorly is such a healthy thought and feeling. xoxoxoxo
Just got back to my town. Hospice team lead called when I was about 15 mins from home. She said that they are still working to get her qualified. I actually am fine either way. I think the most difficult part is done, that being persuading my brother to consider this option. Now, I think that when it really is time, heāll be ready.
At the meeting with the team lead Monday night, my brother actually said how he was proven wrong about hospice when we used it for dad. He said that heād been afraid that hospice just meant giving up, but he so appreciated the nurses and how they cared for the family as much as the patient. My brother ā¦ he drives me nuts, but heās also such a big creme puff. Heās still trying to reason with mom ā āDonāt you remember XY and Z?!ā No, brother, she doesnāt. Itās so stressful to watch, but itās like he absolutely canāt help himself.
I have another question for the crowd. Those of you whose loved ones had sundowners: Did your doctors recommend medication to stave off these episodes? I donāt know why I never thought to medicate for that; I guess I assumed there was nothing you can do. But the hospice nurse who did the evaluation yesterday said that my mom is on the lowest dose of alprazolam and is on only one a day, which we give her in the morning, and she thought it would be helpful to give her a second dose midafternoon to help with the nightly episodes.
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My mom had sundowners. We had a geriatric psych NP that tried a variety of meds but nothing really worked all that well for my mom. Keeping to a routine, playing favorite music, watching favorite shows, and soft voices seemed to help more than meds.
Meds didnāt work for my mother either. Docs around here will not give alprazolam to a patient with dementia. In my motherās case it made her dementia markedly worse immediately, often without return to previous level. Gabapentin is often used.
Once my mother was on hospice we tried Haldol, ativan, gabapentin, lexapro. I insisted she be off all of the above and instead tried to have a volunteer or family member (myself) there during that time (sundowning).
The blessing for my mother was sleep meds at 8pm- Lunesta and later 100mg gabaepntin was added as a booster. If things were bad I would chase down the AL aide or nurse to get the sleep meds at 7!
My dadās neurologist prescribed trazodone (50 mg) for sundowning. He said it is an old fashion antidepressant that causes drowsiness. It helped. If needed, dr said dosage could be increased bc 50 mg is a low dosage. Mom didnāt want to increase it bc she was concerned about over medication. He was also on memantine for years. I donāt know if that did anything.
Dad was able to stay home until the end bc my mom and me were his main caretakers. I was luckier than mom bc I was able to go home every night to my family. When he was finally on hospice (about 6 weeks before his passing), we hired around the clock private live-in help. Hospice was quite minimal for dad - a weekly nurse visit and aide for shower probably bc it was during covid years. Live-in care was costly, but mom needed to sleep to take care of herself.
They enrolled my mom in hospice today. Curious to see how/whether this changes anything.
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Hope your family gets some relief! Itās hard.
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Hopefully you will have more services available. Just a warning though, consider keeping good notes (or maybe a shared google doc). Even in our short time with momās hospice with minimal services, I was surprised how many contact names we had. This included people we met in person and a bunch of people we talked to over the phone.
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Hugs to youin the journey. The mindset is different. Do you know yet what they will provide?
Again, our mindset really wasnāt different when my mother went on hospice. It depends on the situation but change in mindset is not always needed. Her hospice diagnosis was dementia so we continued all other meds and appointments. But we had the extra services and quick access to certain meds, and I had someone to discuss choices with on a regular basis. My only comment: keep control. I did insist on making decisions ultimately and declined some meds. In the last two days in the hospice house, we certainly had to change our mindset and it was a shock!
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My mom and brother were both on hospice less than a day. My FIL was on hospice for about six weeks. My MIL has been on since early this year. All of them had different situations. My MIL is the only one who was put on before death was staring her in the face. For her, hospice has provided assistance that supplements the care given by the assisted living staff. They also manage her medication in a way that is consistent with her desire not to extend her life. They bring in oxygen when she needs it for her comfort. Most importantly, being on hospice means that the assisted living staff will not send her to the hospital if she gets sick.
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This was the most crucial for us too. My mom did not want her life extended (was super clear about that while she was still able to make decisions) and being hospitalized was incredibly disorienting for her and she would often take weeks to recover back to baseline.
Most importantly, being on hospice means that the assisted living staff will not send her to the hospital if she gets sick.
Another strategy for that (if not on hospice yet) is to sign a form -in MA it is a MOLST-saying no DNR, no artificial ventilation or nutrition etc.- and no transport. That way the Assisted Living staff were required to call me if they wanted to override that legal form, and I said no. Often it was something like a bad nosebleed and I provided nose inserts with anticoagulant and gel packs to ease stress on staff. The big thing with hospice was that the staff didnāt have to deal with these things (and I didnāt have to be the difficult proxy saying no, try harder!).
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Here is a local story about a wife and her husband with Dementia. Good clip on their lives.
There were earlier talks of hospice and dementia. My mother went downhill. Her last 18 months were rough. She ended up with Lewy Body Dementia diagnosis, tough because the level of impairment can dramatically shift day to day- cannot put a spoon in her mouth one day, dressed herself to the nines the next.
I called hospice about a year before she died, nope. I called them what turned out to be 6 months before she died, maybe, no, nope. Finally got hospice 3 months before she died.
After she died I gave feedback that they might want to better evaluate these situations as based on 6 months to live she should have gotten care sooner. The director came back a few weeks later and let me know their admissions person stood by her decision.
I should join that other thread, just typing this is bringing up feelings. I so could have used that very small level of support those extra 3 or even 12 months.
Oh, and whilst my mother lived too long, she really did, I do not want to go the way she did and know she would have hated it; my Dad, like @compmom posted, they gave him his initial morphine & he never awakened, died the next day. He was not really complaining of pain except during certain movements. I donāt feel like it killed him, but I do feel like he may have had a few more days by strength of will.