@rockvillemom, I just read a blog post with the following title: Lewy body dementia and a farewell to a physician’s father. It’s by Janice Boughton. Here’s an excerpt:
There are some medical tests that will help to diagnose Lewy body disease, but they are not commonly performed. It is most commonly diagnosed by the identifying 2 of 4 common clinical features. These are:
Fluctuating cognition with varying levels of consciousness and alertness. They will fall deeply asleep and be unarousable or be very slow and confused, lasting hours sometimes, then improve to a more normal baseline, laughing and participating in conversations. Family will sometimes think they have had a stroke or a seizure.
Visual hallucinations. These may be quite detailed.
REM sleep disorder. Patients will often talk in their sleep or do complex movements, often getting up and walking or performing complex behaviors. This can be disturbing and even dangerous to a bed partner.
Motor features of Parkinson’s, including pill-rolling tremor, slow movements and rigidity. These features almost always follow the development of memory loss.
Someone else had mentioned this as well - the deep sleep and being unarousable is spot on. Thank you for sharing this - will mention to cardiologist at upcoming appt.
And that’s why we are all going to the appt. I want to know what she thinks it is and what modest interventions are possible. She has already told him he is too weak to survive the valve replacement surgery he needs. Maybe a med adjustment or new med would help. But he is not interested in a MRI or extensive testing and we support that position.
No specific medical advice, but just sending hugs and kind words. There will most likely be no resolution for the bitter, painful memories of his personality.
This is that hard, harsh part of life, walking alongside your dad in what could be his last days. Just do the things that must be done, and know you are not going to regret stepping up for this tough role.
Take each day as it comes, and seek out small pockets of self care. Taking a warm bath, reading a book, talking with a friend. You need to prepare as if this is a marathon, and call in reserves from any other family members.
Don’t be hard on yourself if you have conflicting thoughts about your dad. Give yourself grace if you need to walk away to regroup.
You can do this! And you can “talk” with your cc friends when you need to blow off steam.
@threebeans very difficult. He shows real signs of dementia/cognitive impairment. We went to the major cardiologist appt in December, the dr was fantastic, had a very long conversation where she told him he needed to listen to me, let me handle medical decisions and appts, and he agreed and I was elated.
That was short-lived.
I told him the following week that I had scheduled the additional tests and appts the cardiologist wanted, and he went nuts. He had no memory of discussing, no memory of agreeing to it, etc. So, I emailed the dr that he was refusing to cooperate and cancelled the appts and so be it.
I hope this does not sound heartless, but it sounds like your dad is really done with living. He is angry, belligerent, and doesn’t seem interested in life anymore. You really should not feel guilty if this is just his way of saying he wants to go. You have done everything a daughter could do and more.
Yes, choosing your battles is important as our elders age and lose cognition. We have given up on treating dad’s sleep apnea—straps of mask were just too confusing. We tried a mouthpiece but he rarely remembers he has it or what it’s for.
We got hearing aids for him and mom but he keeps them in his ears 24/7 and never recharged them unless we take them out of his ears and recharge them. Mom only puts them in when we insist and then takes them out again as soon as she returns home.
I suggested that the last appointment to the cardiologist be cancelled since there has been no change in dad’s condition and all the cardiologist did was pat dad and say he’s doing great at his age of 93.
We are shifting our focus to their comfort and quality of life. Medical appointments generally don’t contribute to either. The internist cancelled dad’s last appointment as the MD is 68 and having his own health issues. He didn’t reschedule or offer to reschedule.
@rockvillemom and all the others posting on this thread—you’re doing amazingly under challenging conditions. Kudos to you!
I tend to agree. The cardiologist wanted him to wear a 30 day heart monitor to see if he needs a pacemaker. But I’m fine not doing this, even if it would solve some of his issues. He’s 88 and pretty much done. I agree re focus on comfort and quality of life. I am not pushing for anything medical that they do not want to do.
They have an 89 year old friend who had heart valve replacement surgery in August. She had a very rough time, was hospitalized and then in rehab facility for months and now in assisted living. She was mentally with it prior to surgery, now she has no idea who my mother is when she calls, despite being friends for 20+ years. We see no benefit from her having had this surgery and I am glad that this has given me a chance to discuss further with my parents their wishes.
I have an 84 year old neighbor with an 87 year old husband. The husband is declining rapidly but doing well considering he’s 87.
She’s been having some shoulder problems and her kids wanted her to have rotator cuff surgery. My H recommended his very good rheumatologist for her pain management (and he was helping) but her kids have nixed it. I think they are in denial but I don’t think elective surgery is a good idea considering her physical shape.
That was a long winded explanation that I think it’s good to know your parents limits. I know that my dad got tired of living the way he was. And we had to be ok with that.
There are so many side effects from anesthesia, especially in older people, it can bump them down a level of ability and they may not get it back. Even just a trip to the hospital can cause dementia like symptoms in a senior who seemed fine before.
My dad’s 96 and recently in the hospital.
My takeaways— nobody gets sleep in the hospital. He was a zombie by the time he left and I couldn’t wait to get him home. Took a week to return to anything close to normal
You would think dementia but it was really sleep deprivation.
A good cardiologist is worth his weight in gold.
Pacemakers save a lot of people. I’d like to hear pros and cons but don’t want to derail a thread. I can open a new one.
I’ve been amazed at how physical therapy has so greatly benefited my dad. I can’t say enough how simple exercises have made huge differences in daily life. And he was already doing well beforehand.
There are so many side effects from anesthesia, especially in older people, it can bump them down a level of ability and they may not get it back. Even just a trip to the hospital can cause dementia like symptoms in a senior who seemed fine before. I feel like once the mind is going, the focus should be on comfort care not big life prolonging procedures.
Yes, hospitals are confusing for anyone but for folks who are already having cognitive issues, it can cause even worse mental health status and the problems caused may be permanent. It can cause dementia symptoms in perfectly healthy younger adults, so even moreso for medically fragile elders.
I personally would be very cautious about prolonging life in an elder with significant permanent cognitive deficits, especially via a pacemaker. Really think it through – what is the best that can be expected? What is the worst? What if the person has permanent pain and cognition loss from whatever the procedure and/or hospitalization is? Pros vs cons? Having the body outlive the mind is a painful thing. Having a person trapped immobile in a body while still being able to think is also not a life that many would choose.
My FIL got to the point where he simply did not want to abide by the doctors recommendations, he didn’t want to watch his liquid intake or reduce his sodium or quit smoking. My husband took him to most of his appointments and finally FIL said, “I don’t want to do this anymore. I miss my wife and don’t want to do this anymore.”, So then the conversation moved to hospice care and they were a blessing in his final few months.
Well, just a suggestion, which, of course, @rockvillemom is free to ignore.
My mom was often mentally aware and perfectly aware of what she was doing. For example, she wanted to send out Christmas cards. My sister helped her. My mom usually wrote a message on each card. My sister got her to write a generic message, typed it out, and printed multiple copies.My mom signed each and every one and enclosed them in the cards. She was very grateful to my sister for helping her do this.
A couple of weeks later, she began receiving Christmas cards that mentioned hers. She became infuriated. She had no memory of sending hers and turned on my sister screaming about impersonating her and telling people things she wanted to keep private–that would be being in a nursing home. My mom had specifically told my sister that she wanted people to know, in the hope that some might come visit her there.
So, after that, whenever she had a good day and wanted us to do some specific thing we’d write out what it was she wanted us to do and have her sign and date it herself. This was not designed to convince some court or anyone else she had agreed to this; it was so that when my mom forgot what she had said before, we could show her the note she’d signed.
Now, of course, that might not work. For my mom, though, it did. We’d show her the note and her signature and the date. She’d get flustered, but say “I don’t remember doing that, but I must have. I’ve forgotten. My memory isn’t what it used to be” or something similar. She’d calm down. And if she asked us why we’d asked her to sign something, we’d tell her that we just had asked her to put it in writing so we would know exactly what she wanted us to do.
Anyway @ rockvillemom, I’m only suggesting this in case your dad does ask you to do something you think makes sense to do and you’re afraid he won’t remember asking you.
I think that is an excellent idea, thank you. Or maybe taking a video. Crazy that it comes to that, but your example was perfect, just like what I am dealing with.