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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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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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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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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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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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You need to have her evaluated. A good physical is in order. Your next decision is an AL if u can afford it or LTC and Medicaid paying for it.

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.
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I really feel for you as I’m in the same situation and watching life passing me by. I try and go out as much as I can just for an hour or so a day which really makes a difference. My daughter in law and friends offered me a mini holiday but my husband refused to have a help come in to assist him. I suppose I should toughen up but it’s all an emotional game so I didn’t go. You’ve been given some good suggestions so I hope you find a way
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againx100 Sep 2019
One way people have suggested getting help into the house is to have them help "you" - clean the house, do laundry, cook, etc. Then maybe hubby gets used to someone being around and you then, as you say, toughen up and TAKE that holiday. He does not have to like it. This break is all about you, not him. Take a deep breath and work towards that goal!
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My husband is in a NH, (Parkinson’s, cannot walk)...insurance is not paying for his LTC of course. We are blasting through our savings and I am terrified. In about a year he will qualify for Medicaid, which also terrifies me because of the oversight and restrictions. Advice anyone?
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DizzyBritches Sep 2019
Have you discussed it with a lawyer who specializes in elder care? There are some rules in place to help prevent a spouse from becoming destitute when the other spouse needs LTC. If you haven’t done that, you may want to. It might allay some of your fears.
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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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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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I could have written this, except that I am a woman caring for my husband. I too feel imprisoned. I have not yet come up with any solution because every time I go somewhere, even for a few hours, I have several days of having to listen to recriminations. I have no solution.
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Mckees77 Sep 2019
I hope someone cares enough to help you. We have large family and only some help but due to large family someone does! I’ll pray for you to get reprieve
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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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Have you heard of respite care? Most Assisted Living offer free care for a short time, so the caregiver can have needed time away. Do not allow yourself to feel guilty about using respite care. Think of it as a mini vacation for you and as a trial period for your wife.
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Sueaarnold Sep 2019
Sorry but not likely to be free.
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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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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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Does your wife's impairment keep her from travelling?
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If the roles were reversed what would you want your wife to do? Usually the best answer lies in the gray area, seldom is a strict black or white resolution the best.
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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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Your have burn out. Get her some help for a week and take a vacation. I had to when my older husband was that way. I felt bad at first, bet when I returned I felt better about the whole situation.
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You must seek respite.
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"For Better or For Worse, Till Death Do you Part.."You are Her Heart, Her Yours, Adore....
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The bottom line is would you want your wife to sit there day after day to take care of you if she were the one who was still mobile and cognizant and you were the one who was ill?  I would hope that you can find a happy middle ground.  You are correct, your life is not over and you should be able to do things and go places until you are no longer able.   You do have a commitment to your wife and at the very least, arrange for her to be cared for.
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In my area if you qualify for pallitive care, then they let you place the patient in respite for five days. I guess insurance covers that part too, but like suggested I'd check with your local council on aging for available services. Sounds like you take great care but at this point id completely suggest long term placement. If she was well and her usual self, I'm sure she'd want you to be able to go on short trips, enjoy life, and retirement you worked so many years to provide. Their is no shame and no need for guilt. We are caregivers but we are human first. Our own needs and life deserve to come first at some point. Im in situation with my mother, doing it all, and Im burnout and know the moment is drawing near, that I have to do long term placement as well. I use to struggle with it but I've been ready awhile now. Its too much on one person and what it really says is that we want the best care for that person, even if we aren't the one to do it. Sending hugs and prayers! Your not alone and I hope you look into services.
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OldArkie Sep 2019
I can appreciate your dilemma with your Mom. It would be harder placing a parent in a home because I would feel I had abandoned her. And I know I would never get over feeling guilty, even knowing it was inevitable. My wife is still part of my life but not an active part. She can't make decisions on things and her short memory is worsening rapidly. Last evening I got really upset and hurt her feelings when she accused me of lying to her. She can be pretty mean spirited at times. I can recover my judgement very soon and let it pass as I do everything else. She can still tend to her personal hygiene although I have to catheterize her bladder twice daily. We manage well and I don't mean to complain......except for my original thoughts of confinement! I have pretty much decided that she will stay with me as long as we can manage, reasonably and when things advance beyond my abilities to manage, then I decide. thank you for your concern and advice and I truly hope thing go well with your Mother. Be well.
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