Recently took my husband of 46 yrs to Florida for a week. He can barely walk. Bought first class seats so hed be close to bathroom and first on plane. Had a strong son and my sister to help
bought a lightweight wheelchair to go in and out of rental chair. He needs help showering and dressing. In short almost everything- some cognitive issues but lives to have fun and go to restaurants. It takes a village of support as hes still 200 lbs and a big guy. I can’t do it alone and yet all he talks about are future trips.
its not feasible that our kids can go as they have their own children plus jobs
yet he guilts me that i am holding him back.
my niece is getting married overseas and i would love to go. Is it fair for me to go and leave him with a caregiver?
he’s probably stage 4 maybe 5 with Parkinsons plus cognitive issues- needs help with toilet and sometimes chokes on food
have 24 hr help cause i had a stroke six mon ago from stress/ hi blood pressure
10 Answers
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As in:
"Hon, I understand that you love to travel. But at this point you are too infirm for me to be able to assist you. You are too large and require too much support. So this will not be happening anymore. I am sorry, but it isn't up for discussion or argument".
Period.
End of sentence.
The problem with caregivers is that they begin to feel they are RESPONSIBLE for everything, including happiness. You are not responsible. You didn't cause this and can't fix it so guilt is out of the question. This is simply another loss to grieve and it is fine if he is unhappy about it. Any loss leads to unhappy moments. You are both sad about it. You are grownups. You have been sad about things you cannot remedy in the past, and you will be in the future.
Don't take on things that are not your responsibility to take on. Your plate is full enough. Tell him lovingly and let him mourn.
With your medical issues and his I would not be traveling overseas. Planes are notorious for blood clots. You don't need another one. I don't think it's a good plan, but you must make your own decision about that.
With my mother, I feel like we always went out of our way to make it seem like she wasn't a burden or a problem, so as a result, she was surprised when we didn't want to bring her places (after a major family wedding out of state) because "last time was fine." Except "last time" (the wedding) was a logistical nightmare that took me, my Dad, my sister, and my husband just to get her out the door and on the plane and then into the hotel! I think a lot of folks don't want to think about that part — which I get — but we eventually had to talk to her, gently, about all the things that we had to do to make her have a normal time. Which we were happy to do for the wedding, so she could see her nephew get married. But we had to explain we couldn't do all the time. It was a hard conversation, but worthwhile in the end, because she made peace with the idea that we couldn't do that for every family event.
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When it came to Mom, because everything went so smoothly, I felt if there's a God he had a hand in it. From getting her placed in the AL, later a LTC with medicaid everything fell into place. What does that mean? I was not meant to care for Mom indefinitely. I had done enough.
You need to know when caring is enough. How can you go on a trip you can't enjoy just to make DH happy. If he cannot understand why he cannot travel anymore or is aware it takes 3 people to get him there and have empathy for you, then there is some Dementia here. Plan that trip and tell him you need this time to yourself. He goes to an AL for respite or you hire someone but you are going alone.
You're right not to take him. What happens if he craps himself on an overseas flight? Planes are not nursing homes. They don't have incontinent-friendly bathrooms where a person can be cleaned up and properly taken care of if there's an "accident".
The flight crew on a plane are not CNA caregivers for that type of assistance. So your husband will just have to understand that his days of air travel are over. All the guilt-tripping in the world to you is not going to change that fact.
If you want to go to that wedding, tell him that one of your siblings or cousins is having surgery and you're going to go and help them for a couple weeks. Then go to the wedding and enjoy yourself.
You can still take him on day trips and do local things like go to restaurants. Hire a male companion a few hours a week to help when you want to take him out. There will have to be careful activity planning so his needs can be met while away from home. That's not impossible.
He can'd do the same things you can anymore. That doesn't mean you have to give these things up.
I would not attempt a trip with your husband at this point in time. Neither of you would enjoy it.
You should go by yourself and have a good time.
There are some assisted living facilities that offer respite care.
The facility will take care of your husband while you are away. This is also a great way to introduce him to life in a facility if you choose to place him later on.
Use your own judgment on whether or not to tell him that you are attending the wedding. If you do tell him that you are attending the wedding, you can show him photos of the wedding when you return home.
I placed my husband there for 3 weeks and my sister and I went back East to see our only surviving aunt, cousins, friends, visiting the cemeteries our parents graves and other loved ones graves. When I returned to my husband, he didn't realize I was gone that long. The nurses said he would stand at the window looking for me. But, he did get good care (I checked out the facility before I placed him there). After several years, I felt I needed the break, needed to see favorite aunt (last one left), cousins etc. It can be done. Not cheap to place the loved one in a facility, but I had saved for a vacation and felt I was entitled to it after several years caring for my husband in our home and visiting him daily in the nursing facility.
The facility recommended I start going every other day, to get my husband used to me not being there. Then staying away for 3 days, etc. The nurses said while I was gone the 3 weeks, he would look out the window, but he still was able to eat and do some activities. Did I feel guilty? Hell yeah!! Did I let it bother me? No. I prayed for guidance, for relief, but needed to see my family before I passed, or they did. I'm still here, but my husband has been gone for at least 3-4 years now. You need that break, don't feel guilty, A week or two does wonders for your mental health, and seeing loved family members as I did was a great blessing.
I may tell him the truth if he can retain it, process it mentally and emotionally, and then not hound or guilt you over it. Only you know what he's capable of and what you're willing to endure. But do whatever it takes to keep your stress and BP in check. Doctor's orders!
YES, ABSOLUTELY GO.
It is very fair. You go 'for the both of you.'
Do not allow his disabilities to bring you down with him.
If anything, try to turn it (your feelings) around to LIVE more - for you - for him - for the time you have left.
You will bring more to him when you fully live your life.
He should not be travelling - perhaps at all - although never without a very large, muscular, strong caregiver to assist him. I would recommend: You are not to do be the primary person to assist him - if he travels --- or even goes out to a restaurant. The caregiver does all the logistical moving. You must save your physical body (and mental) / health.
You must put yourself first. Enjoy your life to the best of your ability. And, enjoy the wedding. Now ... with You Tubes, videos and photos on cell phones, your husband can 'just about' be there with you. Of course, it isn't the same, although it is a win-win: you are having a wonderful, heartfelt time and he is safe at home.
While it may be an adjustment for you emotionally, realize that the more you can be yourself and fully enjoy your life, the more your husband will enjoy you.
You will bring him new energy.
You can do both: enjoy your life and be there for him, with compassion and love.
Gena / Touch Matters
Since he was diagnosed in 2015 we took 20 trips or more.
No, unfortunately we did not go to Machu Picchu or African Safari as planned, but took some interesting trips all over the world.
For the last 4 years as he progresses we go Mexico for winter, we just returned a month ago. We stay at the same condo, makes it easier with knowing at least 10 other people
Also this year my GF came to stay with us.
He started to decline somewhat as it is with PD when medications become less effective, his are all motor functions, no dementia whatsoever and not much that can be done in terms of adding meds, one more try with rather uncertain results.
So I am certain no more trips for us
My husband is extremely independent individual in his thinking and doing everything he can not to impose on my extreme independence.
However losing more of motor functions is becoming increasingly difficult and now at alarming rate.
So it was last trip for, it was not difficult for me I had help, but for him trying to do what is normal is getting harder.
Let your husband plan, after all planning is fun as well.
You just simply say no to the next one, you are in control.
Why would you not take a trip on your own? Of course it is fair and necessary for all caregivers to get away.