82 yr old making hand gestures while sleeping. Rapid Decline.
![[Post New]](/jforum/templates/default/images/icon_minipost_new.gif){kind=icon}
Anonymous
| Hand gestures at night--never seen it in Alzheimers or dementia. |
Anonymous
| OP, if he is not eating and not drinking and has fallen 4 times in the last week(s) catch a flight. |
Anonymous
|
OP here with an update:
So we flew in to DC last Wednesday - my DD flew in from college, I pulled my son out of school (he's in HS), DH canceled his business trip - basically we came to say goodbye to my dad who was in ICU with kidney failure and heart valve issue. Honestly, he looked awful. He was connected to a feeding tube and was unable to talk, to drink, or to eat (obviously). Anyhow, Palliative doctor at the hospital basically told us to take him home, make him comfortable and bring in hospice care as there was nothing more they could do for him. They took him off of his feeding tubes, and sent him home. From the moment he was brought into the house he "seemed to stabilize". He's talking, eating regular food, using his walker although very slowly, and having his one nightly cocktail that he's been having every night for the last 30 years. He's even planning to go back to his volunteer job even if only once a week. Not sure that will happen, but it's a goal of his. He is 100% coherent and aware/"with it". There's no dementia or any other neurological issue going on. We aren't fooling ourselves that he will make any kind of full recovery, but truly what we were all expecting was a funeral this past week - not a celebration that he is still with us! Honestly, if we were to contact those ICU doctors to update them they would likely all be shocked that he is even still with us. We plan to have a hospice doctor come next week to look at his kidneys to see if maybe dialysis is an option for him - maybe it will buy him 6 months. I do have a question related to hospice care though. For those who have had a loved one in hospice, can their original team of doctors still provide care or are they not allowed to because hospice has taken over? |
Anonymous
Wow, that is a wonderful story, OP! I am so happy for your dad and your family. I don't have any info for you re hospice but wanted to tell you how happy I am to hear your wonderful update. Hugs! |
Anonymous
| Sometimes when someone is in their last days, there is a little “burst” of energy or wellness before the end. But it sounds like your dad has had a significant period of doing much better, so I’m hoping that things have stabilized. Best to all of you. |
Anonymous
The phenomenon is called “rallying.” |
Anonymous
|
Hi OP, have done hospice with both my parents. It really depends on what you want. The hospice doctor can take over completely and it can be done in home or in a care setting (either hospital or hospice facility). Many think hospice doesn't mean treatment but they can still receive treatment. My dad also had amyloidosis -- cardiac diagnosed at 60 via symptoms which means he probably had it for at least a decade before. He too had renal failure and a whole host of other issues especially being ambulatory which lead to many falls. So gently..... dialysis is a terrible way of life. My dad, while only 65 tried it and was just too much. Really think about qualify of life over quantity which is really hard right now.
I am sorry you are dealing with this. Wishing you the best during this time. |
Anonymous
|
My FIL started having falls due to side effects of medication. He also is close to renal failure but not quite there.
You need to talk to the doctors to discuss this. |
Anonymous
|
1650 here: sorry just saw the update. That's great news OP however time is probably limited. My FIL also recently ended up in ICU and we also thought we would be organising a funeral. They thought he may need to go on dialysis but have at this stage managed to keep the kidneys going.
It's interesting what people have said about dialysis. FIL will probably be going on that in the near future and it does sound awful. They give people a year tops on it and that's being generous. FIL seems to have given up on life already so I'm not sure what will happen. Its hard seeing the decline. I hope he continues to improve, my FIL also seemed to be quite positive and then he just withdrew from life. It's sad. |
Anonymous
Hospice in Maryland--my experience with Mom was access to other Doctors was extremely limited. I did not really understand what I was signing up for. Plus hospice wanted to discontinue about 90% of Mom's meds. I threw hospice out after 3 weeks and unenrolled. It sounds like your Dad has a good quality of life now. Make sure you understand what you are signing up for with hospice. I did not. |
Anonymous
|
I’m sorry you’re going through this.
My father was in the hospital for months and did this. Almost like he was gestering to someone up in the air. He was on very heavy meds and I think that is what causes it. He didn’t have Dementia or Alzheimer’s . |
Anonymous
|
NP here. My dad was in hospice in April and passed after only a couple of weeks, and it was a sudden decline (though he’d been fighting cancer at age 89). When we signed onto hospice, he was no longer able to see any of his regular doctors. However, he would have been permitted to go to the hospital for a small subset of conditions (don’t recall what they were).
We were pleased with hospice. My sister and I stayed with my dad & were the ones to administer morphine and the other med that acted as palliative sedation. My dad passed away holding my mom’s hand, in a hospital bed in my childhood bedroom downstairs in my parents’ own home. It was quiet and peaceful, though heartbreaking. I hope that your dad continues to do well. It’s a wonderful gift that he’s present for you now. Hugs to you & your family! |
Anonymous
|
OP here - wow! I was not expecting to see so many responses to my update/post. Thank you all for your positive words, and also advice.
I actually spoke to my dad this morning (phone), and he sounded terrific. Totally intelligible, and also quite energetice. He remarked that he felt he was getting better as each day passes. We've put a call into his hospice doctor (Montgomery Hospice) to see if dialysis is even an option - she is coming to the house tomorrow to examine him. His amyloidosis is something else all together different. There is absolutely nothing that can be done about that. Over time if his kidneys don't completely fail, his heart will. So for now, we are just grateful for the quality time we do have with him. This is especially difficult for me as I am the only child (there are 3 of us total) that is not still living in the DC area. And I'm about as far away as one can be from the area, and still be in the US - so travel isn't as easy as just hopping on the plane for a quick visit. So there is a ton, and mean a TON of guilt that I'm carrying around with me. My siblings and mom are not making me feel this way, I am doing this to myself. Not healthy, I know. Thank you all again for all the wonderful support as I go through this journey with my dad. |
Anonymous
|
My father, who is in his 80’s, started dialysis several months ago and is doing quite well. Much better than expected. Yes, it makes him tired the first evening after his sessions, but he seems to be tolerating it well. There are other patients at his facility who have been on dialysis for years.
It does require a lot of time, but if a person is independent and mentally sharp with a will to live, it’s a godsend. |
Anonymous
thank you for this ^ My dad is mentally sharp, and has the will to live for sure. Hopefully it will be an option for him! |