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.
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 Old friends from England flew down for a visit, and I made new friends (I had become withdrawn so that was important).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.
Also ask yourself what would your wife do, if it was you who was impaired?
If LTC with Medicaid paying for her care is the option u need to take, you will become the Community Spouse. Now this is just an overview, it all depends on ur situation and the state u live in. As a Community spouse you will not be left impoverished. If you own a home, you will be able to stay and have a car.
This is how it worked for my GFs parents. The father needed LTC. Medicaid looked at the couples finances and found they had 60k. The wife got half of the 60k, the husbands half was spent down on his care. She lived in the home and had money to pay bills ect.
This is a hard decision, I know, but u want to be there for her as long as u can. Its proven that the caregiver passes before the one being cared for. It happened to my GFs parents.
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.
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.
Is there family who can give you some respite time while you do some things on your own?
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.