Anonymous
Post 04/02/2024 06:45     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote: OP here-unfortunately I am not local to the board. He was transported yesterday to a local facility and I already want to move him I'm hoping for a better impression in the light of day today (it was near evening when he was brought there). It was a difficult day.


Give it a few days. Be assertive for the things he needs as well!
Anonymous
Post 04/02/2024 06:22     Subject: Parent w/ Parkinsons, next steps...
So sorry OP. Went though this with my parents and know how hard it is, my dad has Parkinson’s but my mom who was the healthier one ended up sick and dying first. She was in a terrible rehab in NY and I moved them to MD into an assisted living near our house. She was able to do hospice from there. He was a mess physically and mentally, kept falling, and I thought we would lose him too but he somehow rallied. His new doctor regulated his meds. He also sleeps all the time but my understanding is that this is usual with Parkinson’s. He is fairly stable now and still in the Assisted Living with increasing levels of care when he needs it. I don’t know if this route is possible but it’s much more pleasant than the rehabs I saw and nursing homes.
Anonymous
Post 04/02/2024 06:01     Subject: Parent w/ Parkinsons, next steps...
OP here-unfortunately I am not local to the board. He was transported yesterday to a local facility and I already want to move him I'm hoping for a better impression in the light of day today (it was near evening when he was brought there). It was a difficult day.
Anonymous
Post 04/01/2024 12:43     Subject: Parent w/ Parkinsons, next steps...
I am not aware of any long term hospices covered by Medicare. Capital Caring has an in patient hospice at Sibley Hospital. But it's short term only. It's used for respite (under two week stays so family members can get a break/make arrangements) or for those in severe pain/symptoms that cannot be managed at home (IV pain medications). It's very nice there. I believe Medicare will cover respite inpatient hospice (2 weeks) but you have to push for it (basically say he is not safe to come back home). Just could buy time.
Anonymous
Post 04/01/2024 12:39     Subject: Parent w/ Parkinsons, next steps...
I'm not sure where you are located but Arleigh Burke has private rehab rooms covered by Medicare and is military. It's in McLean, VA. They also have skilled nursing and memory care on premises (but private pay). They are very experienced with patients with cognitive issues.

Definitely look at Tricare benefits. I mentioned above but he can stay longer once the Medicare benefits end if he is Tricare.

It's better to pick the place you want him to be then ask for a referral. Goodwin House rehab is supposed to be great too. But a lot of the rehabs are shared rooms and not great at all...
Anonymous
Post 04/01/2024 07:07     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


I posted earlier about my Dad with Parkinsons and hospice for pain relief. UTIs became a major issue for my Dad. He had a series of them and just never got a break. First it was just a UTI...then with pneumonia...then sepsis. When I heard sepsis, I knew we were approaching the end of his time.


We've been lucky so far that this is only the 3rd one, over a few years. But oddly enough, in 2022 my mom got SO sick and it took us days to figure out it was a UTI and she did have sepsis! It was SO fast a decline for her and she's the far healthier one. My dad was cognizant then and beside himself because he could not help her at all (I took FMLA and cared for them, she had an ICU stay). UTI's are just awful.


PP again. I wish you the best of luck tomorrow. I hope you have found a good place for your dad. I hope your mom will also realize that he is getting better care and is safer. We were asked to provide some private care even at rehab/skilled care. I was surprised at first but then realized it made such a difference.


Thank you PP! With the holiday weekend, we haven't heard if there is a bed for him but should know shortly today. Mom was somewhat sad yesterday realizing that this is the reality and she's worried if he'll be upset. I keep reassuring her that this is his best chance to stay alive and not have a deadly fall. She will probably spend part of the day there with him (daily) and help care for him (probably help with grooming and maybe eating), she's pretty protective of him.

Dad does crack me up sometimes-we visited the hospital around dinner time yesterday and he was alert, but he does sundown. So, he called me over in a 'conspiracy' voice and asked me if I had gassed up the car, so we can make a quick getaway tomorrow LOL! He was so worried about paying the bill because he doesn't have his wallet haha, I reassured him that he has insurance and VA and the bill is paid, we don't need to sneak out (my parents are comfortable and have never sneaked out on any bill in their lives). He seemed to believe me, it was a humorous moment in all this stress
Anonymous
Post 03/31/2024 17:25     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote:
Anonymous wrote:
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


I posted earlier about my Dad with Parkinsons and hospice for pain relief. UTIs became a major issue for my Dad. He had a series of them and just never got a break. First it was just a UTI...then with pneumonia...then sepsis. When I heard sepsis, I knew we were approaching the end of his time.


We've been lucky so far that this is only the 3rd one, over a few years. But oddly enough, in 2022 my mom got SO sick and it took us days to figure out it was a UTI and she did have sepsis! It was SO fast a decline for her and she's the far healthier one. My dad was cognizant then and beside himself because he could not help her at all (I took FMLA and cared for them, she had an ICU stay). UTI's are just awful.


PP again. I wish you the best of luck tomorrow. I hope you have found a good place for your dad. I hope your mom will also realize that he is getting better care and is safer. We were asked to provide some private care even at rehab/skilled care. I was surprised at first but then realized it made such a difference.
Anonymous
Post 03/29/2024 21:54     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote:
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


I posted earlier about my Dad with Parkinsons and hospice for pain relief. UTIs became a major issue for my Dad. He had a series of them and just never got a break. First it was just a UTI...then with pneumonia...then sepsis. When I heard sepsis, I knew we were approaching the end of his time.


We've been lucky so far that this is only the 3rd one, over a few years. But oddly enough, in 2022 my mom got SO sick and it took us days to figure out it was a UTI and she did have sepsis! It was SO fast a decline for her and she's the far healthier one. My dad was cognizant then and beside himself because he could not help her at all (I took FMLA and cared for them, she had an ICU stay). UTI's are just awful.
Anonymous
Post 03/29/2024 21:48     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote:
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


We quickly learned Rehab is the polite term for skilled nursing. Don't expect miracles.


Op here. Honestly-I don't. I don't actually think we can ever keep him safe at home again. I know he isn't going to do a bunch of pt/ot and somehow get stronger-physically and cognitively I think this is not possible. Mom was saying tonight, I wonder if he's going to agree or argue about going to the facility on Monday (that's the plan) and I told her-he does not cognitively have the ability to have input on that. I'm not even sure he knows he's in the hospital, tonight he told me that 'the food is good in this restaurant' lol I'm glad he likes it! I'm taking FMLA Monday so I can be there for transport and admission, this is a lot for Mom to handle by herself.
Anonymous
Post 03/29/2024 21:04     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


We quickly learned Rehab is the polite term for skilled nursing. Don't expect miracles.
Anonymous
Post 03/29/2024 06:26     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote: OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.


I posted earlier about my Dad with Parkinsons and hospice for pain relief. UTIs became a major issue for my Dad. He had a series of them and just never got a break. First it was just a UTI...then with pneumonia...then sepsis. When I heard sepsis, I knew we were approaching the end of his time.
Anonymous
Post 03/29/2024 05:37     Subject: Parent w/ Parkinsons, next steps...
OP here-Dad has a UTI, as well as a touch of pneumonia. No fractures, thank goodness! He is settled in in the room, he was actually fairly cognizant this afternoon, understood that he had fallen and needed to be there. He even showed the nurses some humor!

It was immediately agreed and decided that he will go to a rehab after discharge. The caseworker will coordinate with the VA social worker to set up a facility locally. Once that is where he is, I can ask about other assessments (like hospice) I think. But it's a relief to know that I'm not expected to somehow get him home in a few days.

So we've got some breathing room to figure things out. And Mom can get a full nights sleep for the first time in forever. I'm glad we went in to the ER.
Anonymous
Post 03/28/2024 17:23     Subject: Parent w/ Parkinsons, next steps...
Are there any in patient hospices that allow longer stays and are covered by Medicare?
Anonymous
Post 03/28/2024 14:29     Subject: Parent w/ Parkinsons, next steps...
Anonymous wrote:Similar situation and it’s gut wrenching. I think at this point it’s a question of focusing on what your mom and dad’s wishes are. When you hit this point it can help to look at their advanced medical directive and really assess quality of life and what the person before the disease would have wanted.

It will be very hard to accept for your mom. Sleeping a lot and repeated falls were a sign the end was near for my loved one along with weight loss.

Hospice won’t provide 24/7 care or anything like that. It will get you supplies and ensure a peaceful passing because that’s their entire focus (bathing, massages, hospital bed, nurse visits as well). That being said, once you elect hospice you can’t seek treatment. For example, he won’t be able to receive IV antibiotics and may have to stop medications he is on. If he falls, hospice will send someone to check on him and determine if he needs to go to the hospital or can stay home. The focus is always on reducing hospitalization and on comfort care.

Rehab, skilled nursing, and assisted living won’t provide 1:1 supervision. He will fall there just like he does at home and then you have to get used to staff, different care than he’s used to, and new issues. Medicare will only pay for rehab if he can participate. Can he and would be want to be forced to do OT/PT for several hours a day?

I would probably do a hospice assessment. It was very hard to make the decision to enroll (and we even enrolled and disenrolled and later enrolled again!). But I’m glad we did it because the condition turned on a dime. The hospice workers were amazing and I was able to arrange cremation, etc. ahead of time because they helped me prepare.


There is in patient hospice which provides all services 24 hours. Family members can stay over night.
Anonymous
Post 03/28/2024 14:24     Subject: Parent w/ Parkinsons, next steps...
If you go the rehab route and have Tricare, know that Tricare should extend the amount of time he can stay in rehab and have it be covered. Double check the benefits, but I recall something about this.