New Here and trying to Manage

annahowie · January 8

I am new to this group and so glad I found it!! At the suggestion of my VA Caregiver coordinator to find some kind of group.

My DH was diagnosed almost 4 years ago - not your typical pattern though it was more like someone flipped a switch. One minute he was fine and the next minute he did not know who I was...this was right when everything had shut down due to COVID so I could not even get him seen. Fast forward to now we have moved from NC to MN to be near our daughter and grandkids as I had no one in NC. The move as much planning and thought that I put into it was still brutal. First time in 34 years of marriage he was aggressive. Took him to Mental Health at the VA here and finally with the help of medication things have somewhat stabilized. I am no longer working so I can care for him - he seems to be exhibiting most of Stage 5 symptoms now.

As I have been reading through posts here for the past few days before posting I have had tears streaming down my face with the realization that I am not alone - I am facing the same things as a Caregiver that everyone else is. I do the best that I can every day waking up in the morning hoping for a good day yet each day is a roller coaster that goes up and down multiple times. I am still angry over this happening, I am grieving for the man I fell in love with and the partnership, hopes and dreams we had that now seem to be gone.

My main question right now would be this.....do you as a caregiver get respite by having your partner go to some kind of program 1 or 2 days a week? The VA suggested it to me, they cover the costs but I just don't know if it is something that would help. I know it would give me a bit of a breather but does it benefit them?

Thank you!!!

gampiano · January 8

Hello,

Regarding a day program, I would say that each case is unique,and it's worth trying. My husband , also at the suggestion of the VA, was in a program for a few months, 2 days a week. He did ok as long as the weather allowed him to be outdoors, gardening etc. As soon as he was forced to be inside, it became problematic, and he kept trying to leave. So for us, it wasn't a good fit. I feel that it may have been easier if he was on a medication for agitation, but that didn't occur until after he was home. There are others here who have had a good experience , and hopefully they will weigh in as well.

You will need some respite along the way, and this is one option. I opted for a part time care giver/companion who had a lot of experience with dementia, and that worked well, but both options would be so much better.

I wish you all the best, and please take care of yourself. I hope your family is supportive.

Maureen

wizmo · January 8

Respite in any form and any amount is what I crave the most after 6+ years on this caregiving job. Tried day care and in-home caregivers, not all successful but any time I get to be off duty is reducing my stress level if only temporary. Sometimes it is about doing something for you more than your LO. What do you have to lose by trying?

DCCEPEK · January 8

Take of you so you can continue to care for LO.

harshedbuzz · January 8

IMHO, the single best thing that can be done for a PWD is making sure their primary caregiver gets the breaks needed to care for themselves physically, spiritually, and emotionally.

My mom neglected herself to care for dad. She let prescriptions lapse because she was too burned out to get them refilled or ask for help. The end result was the loss of vision in one eye which meant no more driving which cost her her independence. She's not living the Stage 8 she'd wanted and frankly, neither am I.

HB

Ed1937 · January 8

I'm with HB. Take the breaks when you can get them. It's worth a try, and if it doesn't work out, you have lost nothing. But be aware that sometimes it takes a few sessions for them to become comfortable. Some never do. But you have to take care of yourself. If you don't do that, it will make it harder on both of you.

annahowie · January 9

https://alzconnected.org/discussion/comment/194010#Comment_194010

Thank you Maureen! I do have a very supportive family and now that we are here in MN near my daughter and her family they do spend a lot of time with us.

tigersmom · January 9

Anna, daycare has ben a godsend for me. DH started one day a week in February, then went to two days in June. I am considering adding a third day now. He had tremendous separation anxiety at first, and has done better on a low dose of citalopram (that's generic Celexa). The staff there are kind, caring and infinitely patient -- much more so than I. I have learned a lot from them, and from the good people here. He really enjoys the socializing, and comes home happy and tired. I would encourage you to explore it. It doesn't work for everyone, but I wish I had started it sooner than I did.

New Here and trying to Manage

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