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This has gone on for a few years and I can't help thinking about my life slipping away while I am obligated to care for her, even though some impairment may be not as bad as it seems. I wouldn't ask someone else to share my problem but thinking about continuing this relative confinement is very discouraging. I had planned a retirement of travel and enjoyment and now feel imprisoned.

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My partner was diagnosed with Parkinson’s disease 11 years ago- we seemed to have a charmed life for 8 years after diagnosed. We loved to travel, and was able to keep it up. But the last couple years his issues worsened and I was burning out with caring for him on top of s demanding 50-60 hours a week job. I would work all day, come home and care for his needs, then once he was to bed I powered up the laptop and worked some more.
We had planned a trip to Vis Croatia, but I knew there was no way. I thought Barcelona would be doable. I lived there briefly, have friends there, and know it well. I found a villa for rent near Sitges. Then he started having PD related hallucinations and more frequent gait freezing. I was getting ready to cancel the trip and a dear friend, who has been caring for her mother for many years, took me to lunch and told me that I needed to take the trip and on my own.
I thought people would think that I was selfish and just awful. Actually friends and family totally understood and knew how much I needed it. One, not so shy friend said “thank god, cause you look like s*#t
I made the trip and had a wonderful month untethered- we checked in each day. Went on day trips or just sat on the beach with no plans or schedule. Coincidentally the friend that gave the advice wrapped up a cruise in Barcelona so she visited for a couple days. Old friends from England flew down for a visit, and I made new friends (I had become withdrawn so that was important). I returned refreshed, positive attitude and recharged - and a better caregiver for doing so. Now getting ready to make the same trip, when we traveled together we never went to the same place, but now it’s just me and the reason is for me to take time for myself. So familiar places are less stressful.
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LexiPexi Sep 2019
Thank you for this common sense response. I just wish I didn't feel so guilty about taking even a three day weekend. Like you - my husband was diagnosed with Parkinson's in 2002. He was ok until eight years ago and then the decline began. Every 6- 9 months or so, something new happens and further decline - never coming back up to the original point. He now is in Stage 5, has Parkinson's related dementia and is clinically blind - as he can no longer open his eyes. It is challenging for both of us. We, too use to travel together and were able to see a lot of the world. I'm exhausted and would like to take a trip to relax and escape. Unless one has (personally) been through this in their life, one cannot understand. I would like to ask a personal question. How did you tell him you were leaving and would be gone for a month? Is there an easy way?
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It’s a difficult question. You have only one life. Perhaps you could find a way for planned ‘time off’. No-one travels for 12 months of the year. If you organised 3 months respite care, you could plan to travel then, and feel refreshed when you get back. Perhaps your wife could try assisted living – a lot of people really seem to enjoy it. Or you could both move to AL, and you go away alone more frequently for shorter trips, without it being too disruptive for her. If you accept your own needs without feeling overwhelming guilt, you may be able to meet them and still keep your marriage together.
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againx100 Aug 2019
That is a great idea!
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Time for a visit to her Dr. and a complete physical and cognitive evaluation, for baseline information.

Then you have an idea what you are dealing with. Living with and caring for your wife--(bless you!) you're too close to the 'problem' to have a clean mind about what to do.

If you can hire someone to give you respite time (you don't mention kids, but they'd be in their 50's at least) take a 'man-cation'. My DH used to take a week every year, sometimes broken down into 2 shorter ones and he'd go with friends who liked to hike, and climb and do high-level mountaineering. Then we'd try to take the family on a weeklong vacation. It worked OK. (And no, I never got a vacation, not ever. I can't count staying in Texas babysitting for my daughter for a week to be a vacation. Nor the month I spent babysitting for my kids when then had a new baby and were in MedSchool/LawSchool much of a vacay)...so I do know how important getting a break is--as I never did!

You'll be a better CG when you have scratched that itch to travel. sounds like your wife is not up to the kind of travel/adventures you'd like.

Life very rarely hands us the things we want. We have to work hard to find a way around the hand we're dealt.
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againx100 Aug 2019
I agree.

Get her fully evaluated so you know exactly what her issues are and how best to proceed.

Respite care is well needed. There is NO reason you can't put her in respite care so that she will be safe and you will get to take a well needed and desired vacation. Do it NOW!

And enjoy your time to yourself, without guilt, etc.
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First, how can you "not know for sure how much", have you not investigated her problems with her doctor? It's one thing to be private and self reliant but it is something else again to bury your head in the sand and stubbornly soldier on when there may be help available. Nobody can be a solo caregiver, the more support you accept the stronger you will be - reach out to family, friends and community and medical supports.
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Some nursing homes offer adult daycare!! It's wonderful. You can have up to 8 hrs a day to do other things & control how often, which helps to keep it in budget. The price is about the same as having a health aide. Meals are extra. They can also live there temporarily while you take a vacation. Good luck :)
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Mckees77 Sep 2019
Also if patient Qualifies for Medicaid hospice they have volunteers are going to sit with love ones
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As mentioned by by Susanonlyone some rehab and nursing homes offer temporary respite care time for patients of caregivers. Other than that you need to find a family or friend who will help you with sometime off. Although you planned a retirement different from your current circumstances, I know you love your wife and to go off on a vacation without her would probably not be too enjoyable. You have to really realize that you are going through a major adjustment in your life and your wife’s life. It will take time to adjust it.

Also ask yourself what would your wife do, if it was you who was impaired?
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I think it is important to not give up too soon, to try to do at least some travel. Did you both retire very late or did you already do some travel and fun things you had planned. Are there things you can still do together. You say you don't know how physically impaired she is, or exactly how mentally? Challenge her to do her best with you.
Is there family who can give you some respite time while you do some things on your own?
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GraceNBCC Sep 2019
You mentioned freezing in her hair. You need to contact Parkinson's Specialist and Support organizations. Things like colored masking tape on the floor and a laser pointer on a walker can address this issue. Also PRN meds that are fast acting can work wonders without overmedicating.

The vast majority of patients resist outside caregivers. Start by bringing them in when you are there. Then duck out for an errand after a few visits.

Take shorter trips and buy insurance to cover cost if you need to cut the trip short.

Perhaps you need to see a grief counselor. You are grieving the loss of your LO as a travel partner, and the retirement you dreamed of and worked for. This happens to a lot of people! Taking some Me time is important for you both, but so is honoring your vows. He didn't choose this! No one would! Remember his grief! His lost dreams!
Do any little trips you can together. Even if 1 in 3 goes fairly well, it will free your LO from the isolation and prison of this disease.
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First, a move is in order. There are places that offer independent and assisted living on the same campus. Those in independent living can get assistance and use respite care. You would then have the ability to travel easily and become active in the community and thereby be less isolated. You may have to relocate to a different city or state to find the right place but it will definitely be worth it.
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Arleeda Sep 2019
Yes, when my husband developed mild cognitive impairment from multiple TIA's we moved back to our old home town where his sister and both sets of our children lived and into an independent living facility. That way he could have meals while I traveled. He only lived for 15 months before having a major stroke, which killed him--but I liked the independent living facility so much that I stayed for three more years before I moved out into a cheaper (but larger) apartment in a high rise that caters to seniors but I am responsible for my meals and cleaning. And I thoroughly enjoy traveling with groups so all is well. I miss my husband when I am not keeping busy, but we had a good life and traveled quite a bit together before we retired.
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My dad went through the same thing he actually retired at 71 because my mom showed signs of dementia at age 65 . I’m sure he felt very similar to you as they had some plans for travel and they never did it . he took care of her at home for years until age 85 he couldn’t do it anymore and had to move her into a group home . it’s normal to feel that way but it was nice to see our dad faithfully care for our mom as long as he could . What matters is what you do here on earth and if you believe in God/heaven just know your going to have it so much better there. No tears , just peace with loved ones. My parents had eight kids and we still have Mom in group home. She is now recently declining more after 19 years with dementia. It’s a tough and ugly disease and only our faith gets us through it.
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Teri4077 Sep 2019
oh, my -- 19 yrs! The good Lord bless you!
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First of all, I would seek medical advice as to exactly what her status is both mentally and physically. Second of all, given you have only one life to live and you want to enjoy what little there is left of that life, YOU must stop and think of YOU first. I know that is not always something easy to do but if you value the life you have remaining and want to do some things before your time comes, YOU MUST PUT THAT FIRST. You won't get another chance and it appears you have already gone far above what some people would do for her. Consider either putting her into a respite situation while you do your thing - you deserve it and need it to keep your sanity and peace - or find a caretaker to step in while you are gone. And possibly consider placing her permanently. It will only get worse until there is no hope of a good tomorrow. Don't wait. Seek out solutions now - and start thinking of yourself while you still can.
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