We used to live abroad and travel all the time, but now my husband doesn’t want to go anywhere. Not even out to lunch or dinner or to a movie. I am so incredibly depressed and bored and really need a change of scenery and pace! Our daughter lives on the other side of the country and my husband’s kids are all busy with their own families and grandkids. So, I have been having my husband’s needs come before my own for four years now without a break. I am getting really stir crazy!
Similarly, can you invite a friend for lunch or dinner at your place? Think of a time that would be least disruptive to your husband If he naps after lunch, your friend come come for lunch and after it you can suggest to hubby that he take his nap while you clean up the kitchen. The dishes can stay put while you have a great visit.
Have you joined a support group? Check alz.org/care/overview.asp
Some of the meetings offer care for your loved one so you can attend. You could get some suggested strategies for respite and who knows? You might meet other people in the same boat who would like to go to the movies sometime.
We moved last year to a new state (so my husband could have better health coverage.) It has been difficult to meet people because we are so homebound and my husband doesn’t want anyone to come to the house- not even his kids. I find that dementia takes aspects of someone’s personality, mostly bad (in my husband’s case, being a control freak) and make those aspects 100% worse. There is a support group here that meets for two hours, once a week. It takes me about an hour round trip there and back. But three hours away from my husband is impossible now. Anyway, it’s not that I want a ski trip to the French Alps to to go to South America. I honestly would love for us to go visit our daughter in NC! That would be a vacation to me. I apologize that my attitude makes you think that my husband would be better off in a nursing home than with me. He continues to be my number one priority and always will be. I’ll continue to try harder. Thanks for listening. 😊
Are you completely alone in this? It’s a given that you need a break. I understand your kids are busy. However, he is their father and they are old enough to pitch in, even for one weekend afternoon a month. Don’t be afraid to ask. They most likely won’t offer. My kids don’t. It won’t be easy if Hubby doesn’t want them to come to the house. What would he do if they did? Can you have them just drop in and not make a big deal of it beforehand to him?
In the end, you may have to consider a facility. This is a disease that has no reverse gear. It’s one of those diseases that “if you think it’s bad now, just wait” applies to. Find out what his health care plan will cover in the way of respite or home healthcare. There comes a time when we all just have to put ourselves first.
I think you are extremely reasonable in wanting a break, and needing a vacation. And I think regular breaks would also help you be the best caretaker you can be. Please don't feel guilty about needing one!!
A first thought is to get a family member (members) to stay with your husband for a few days so you could visit your daughter, go to the mountains, or just stay in a local hotel for a few days where you are not on call. And many assisted living places offer respite care. I hope you can find something that works for you.
Good luck, and take care of yourself!!
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We interviewed three of them because a good fit with our caretaker's personality was vital. I found they are compensated in different ways. I was more comfortable with one that is paid hourly vs paid by the service providers they recommend. It is not inexpensive, but you may only need an hour a month to start off. Our helper knows all the resources available in the area and has suggestions on how to pay for it. Especially if you are new to the area, I would recommend a consultation with someone who can help you line up resources to get you some help in arranging respite care. You need to be able to get away for three hours...even if you just go sit in a park.
Taking the best care of your husband does include taking at least basic care of yourself, and that includes R&R. I don't know what's stopped you looking for respite services up until now, but if it's guilt or anxiety then lose them.
I think of it as dealing with a fate worse then death. At least in death, you are free to build a new life and find happiness again, whatever that may look like for you. But as it stands now, you've lost him and you, yet you both continue breathing. With very little joy. My heart breaks for those in this position. And I completely admire the character of those who make such a sacrifice.
Being 18 years younger is just an additional kicker as you've probably got a lot of life left to live.
I'm wondering if you've considered an end point for continuing sacrificing your life this way? Personally I've decided if Mom becomes bed bound, needing her depends changed, I'm done.
(She currently lives with me)
She will then need more care then I can provide.
In your situation, maybe it's time to rethink your options. There's no shame in looking into an AL facility for DH. There's more to life then this level of sacrifice.
You're more then just his wife. You're a mother, grandmother, sibling and daughter, perhaps? What about hobbies, interests, career, friends and the like?
You can have a better life and still take care of his needs. By providing him with the qualified professionals needed to really care for him 7/24. And you will be a much better wife to him. Because being trapped and isolated does not bring out the best in us.
Just food for thought Ej. Big Cyber Huggz 🤗 You matter too!