New/old member back again

Belle

Quite a few years ago I was a member of this forum to get support helping care for an elderly family member. Unfortunately I'm back again because my DH has now been diagnosed with Neurocognitive Disorder. His issues are caused by encephalopathy caused by an autoimmune disease he's had for decades and we have been told it is not Alzheimers. About 10 years ago he had a series of cryptogenic strokes and showed some white matter changes on MRI's. Fast forward to today and his latest neurocognitive tests showed as much as a 50% decrease in functioning in some areas. This week I'm meeting with a geriatric case manager to help me form a care plan. He can no longer be left alone and needs reminders to eat, shower, and change clothing. He cannot manage finances, well, he hasn't been able to handle finances for 5 years. And I forgot to mention that he's in his 50's and this started in his 40's.

As for me I'm tired. Just really tired after managing DH's more than two decades of chronic illness issues, medical emergencies, and hospitalizations plus 5 years managing the other family member we had with Alzheimer's. Also, tired of fighting the VA trying to get respite and AId and Attendance. If anyone has any tips on that it would be helpful. He is 100% P&T disabled vet and is entitled to that help. They even refused to put him on palliative care this year. This intro is a bit all over the place but I wanted to introduce myself because it has finally sunk in that DH isn't going to get better and that I am going to need help.

gampiano

Belle,

I am so sorry to hear this. There are a few pwoplw here who have had more experience with the VA than i have, but i can say that my saving graces have been 2 people, the pcp's nurse, and the social worker who works out of his office. I don't understand the palliative care component here. I called my local hospice and they assessed my DH for palliative care. They will work with the VA, akthough this hospice doesn't have an official relationship with them, but many do.He is receiving palliative care from hospice, as well as equipment from the VA. Maybe work that angle and speak to your social worker as well.

More Later,

I'm praying that you get a break for yourself.

Maureen

Kibbee

Belle .. my DH may be somewhat similar to yours. His diagnosis is Major Neurocognitive Disorder, thought to be a long term downstream result of chemo and whole brain radiation done in his early 40s to treat a malignant brain tumor. His brain scans show diffuse white matter disease. He is now 65, so like you, I’ve been on the caregiver path for many years.

The cognitive dysfunction showed up first, resulting in his inability to maintain a job. He stopped driving in his 50s. Luckily I’ve always managed our finances so no need for changes there. Beginning in 2014 he began having neurological symptoms, specifically difficulties with gait and balance. This ramped up in the past three years, with increasingly frequent falls. At this point he uses a wheelchair at all times, with a Hoyer Lift for transfers. That might sound bad but in reality it’s not that difficult and is keeping him safe.

One of my frustrations is the lack of information about his specific condition. Cognitively he has some similarities to dementia, so I do look at the dementia stages to get an idea of where things are and what might be happening next. But the neurological aspect and its progression is less defined, which leaves me wondering about the future.

Howaboutnow

Belle, I’m so sorry. The weight you’ve carried just this far has been heavy. You must be tired, of it all.

I hope you find something, now, that brings you mental relief. As you know, when we have no control over what’s ahead, having a bit of time to look forward to can keep us afloat. For most of us that respite is ridiculously finite…it could be an hour or two that you can get out alone, 15 minutes to walk outside and breathe deep and be in nature, a support group in-person on online, even better if it is consistent so when you feel like you’re going to blow…you can remind yourself,,,,”ok…i just need to get to 3:00pm for my walk” or “Saturday i get to go run errands alone” or “once i get him in bed I can have an hour to myself”….anything you can repeat regularly so you don’t lose your mind. LOL maybe I’m projecting here…but it helps me.

SDianeL

https://alzconnected.org/discussion/66562/new-old-member-back-again

Belle, so sorry you are going through this after already going through it with another family member. I was approved for VA Caregiver Support. I filled out the form online and they called and we were approved in a few months. Did you file the claim and were denied? The key to filing claims with the VA is to give complete info about behavior. So make a note about everything your DH can't do with assistance. Shower, eat, pay bills, grocery shop, drive, etc. That's how they determine what support you need. There are different tiers of Caregiver Support at the VA. I'm in the middle tier with 720 hours respite care and Caregiver stipend. When my DH needs more care, they will increase the support or help with a MC facility. There is also a Catastrophic Disability category. Based on a VA clinical decision, Veterans are considered to be Catastrophically Disabled when they have a severely disabling injury, disorder or disease that permanently compromises their ability to carry out the activities of daily living.

4 things you can try: 1. Every veteran is assigned a Social Worker at their VA facility. Find out who that is and call them. 2. Call the Patient Advocate. 3. Find your County Veteran Service Office (VSO) who is paid by the County and ask for their help. 4. See if you can find the Caregiver Support phone number at your VA facility and call them if you haven't been in touch with them already. Please keep us posted.

Belle

Thank you everyone for your kind words and advice. gampiano and SDianeL thank you for the tips about dealing with the VA. I was working with his social worker who was brand new to the VA and told me he didn't qualify for anything else, maybe they could give me a few hours of respite if I told them far enough in advance. I have read the VA regs/policies and he clearly does qualify so I will try some of the other options you all provided.

Kibbee - I am relieved to see someone else dealing with a similar diagnosis for their DH on this forum but also sorry that you too are dealing with so much uncertainty. It is so frustrating, like you said, no one gives me any info on how he might progress...stair stepping like VD or a gradual decline like Alz. My IS can still drive but now occasionally puts the wrong address in the map , my IS also has some falls but can ambulate somewhat he just refuses or forgets to use his walker or cane, projects around the house are beyond his ability to plan, etc. Feel free to reach out to me via messages if you want to talk about your situation or mine.