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One of my children will have the gathering at their house, but I am at the point where my wife will not remember she was there, and won't even remember who most of the family members are and will not know or remember where she is she has no short term memory. We will get home and she will complain that she never gets to go anywhere, and we go many places. But it is difficult on me to get her up dressed and out and I am at the point I do not want to do it every holiday. Christmas was good, but Easter, I want to stay home. I want to tell the children that if they want to see us we are here to come visit. But part of me feels guilty. However, I really need to take care of myself I am still healthy and strong, we are both 74 years old, but I know my health will decline also, eventually. I guess the question is, how do i deal with this. Very broad question I know but I like to hear others experiences and take it from there. How do I avoid burnout and take care of my own mental health.

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Good for you for already knowing your limitations. You are not obligated to attend any of these family gatherings, and only should go if you want to. And like you said, you can tell the rest of the family that you will be home if anyone wants to stop by and see you and your wife. That should be good enough, and with no guilt on your part. Surely your family understands what issues you have going on with your wife, and should be sympathetic to it. And if they're not, well that's on them and not you. Only you know what is best for you and your wife, so continue to do what is best. God bless you for taking such good care of your wife, and Happy Easter!
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I think a LOT of people simply do not understand dementia at all. They don't grasp the fact of what it actually takes to get someone dressed and ready for an outing. Or what that outing will take OUT of the person with dementia once she gets home. Or her husband. Younger folks just take it for granted that oh, it's A Holiday. Of course we'll have mom & dad come over, as usual, and have a big shindig. They don't take into account all that YOU have to go through to make it work for YOU.

Like my husband says, experience comes from scar tissue. Unless a person has walked the walk you're on, they just don't 'get it'. So it's up to YOU to explain it to them in a way they'll understand and empathize with you. It's too much for us; we can't do holidays like we once did. Mom isn't up to the task anymore and neither am I, frankly. Let's do it this way instead: _______________.

No need to feel guilty at all. In fact, I felt relieved that I didn't have to 'do' the holidays this past year with The Virus being present. It was the ONE YEAR there was NO stress involved at all. Not that The Virus was a good thing, naturally it was not. It was just nice not to have to DO anything for the blessed events.

And that's what I took from the pandemic: to speak my mind to the family from now on. To simplify things. To stop overspending for the holidays, and overcooking and overplanning and overstressing. To downsize the events and turn them into easier, simpler, less involved days entirely.

Wishing you all the best avoiding burnout and taking care of your own mental health here. You deserve to!
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NeedHelpWithMom Apr 2021
You’re absolutely right. There were a few silver linings during these challenging times in Covid.

There were lessons that we learned along the way as well.

We adapt and learn to live with changes, such as things can’t always go on as before.

With any life altering situations we must make beneficial changes for the person needing care and the caregiver.
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Tell them just what you said here. Moms Dementia has progressed to the point it just too much for me to get her out. She can no longer enjoy the outing and she doesn't remember it when she gets home. Nor can I enjoy it worrying about her the whole time.

And, there is still COVID. I would have loved going to Grandson's 8th B/D party but a couple of people in my daughter's circle had had COVID not 2 weeks before. At 71 and 74 my DH and I chose not to go.

If the child lives close, maybe she can make up platters for you.
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I think your family will completely understand.

One thing to keep in mind is that your children probably have no real understanding of what your life is like day in and day out. I was very close to my parents and came up to see them weekly for the entire day. Nevertheless, it wasn't until I moved in with them when my dad became ill that I fully understood how difficult life had become for them. I'm astounded at how my dad, who was completely functional with no health or memory issues of his own, managed to care for my mother who has dementia and also took care of the laundry, the shopping, and all the cooking and cleaning in a large house.

I doubt your kids fully appreciate what you're up against on a day to day basis. Have a frank conversation with them and have concrete ideas for how they can be of help to you and your wife. You deserve to have a fulfilling life of your own, so the holidays being celebrated on specific days is less important than seeing your family when it works for everyone. I'm sure your kids will be receptive when you're honest with them.
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Seems like your wife has reached the point where outings don't matter since she doesn't remember them.

However, do outings with family matter to you?

If the answer is yes (and you need the social time with family and friends), then how can you make it easier on yourself. Here are a couple suggestions:

1 - Ask family to bring a meal to your home and enjoy together. Ask them to bring paper products so you don't have to do dishes. Breakfasts, brunches, lunches, and early dinners probably will work best. Try to keep your wife on her evening routine as much as possible.

2 - Ask one of the "girls" to come over and help your wife get dolled up to go out. The younger ladies will probably do a better job pulling together pretty outfits, fixing her hair, and doing her makeup. It can be a special bonding opportunity for the "ladies" while not adding to your burden.

3 - Ask the family to create an "open house" when going to visit. Food available when your wife is ready to eat. Not too many planned activities so you and she can participate, or not, as you choose. You and your wife can leave when you are both ready.

4 - Ask the family to give you "time out" with a few family members - at least monthly (weekly would be better). A family member or 2 will stay with your wife and care for her needs while you get out and socialize without restraints. This way you get some quality time with family or friends while your wife is well cared for.
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"Christmas was good, but Easter, I want to stay home. I want to tell the children that if they want to see us we are here to come visit."

I realize it's after Easter now, but there are MANY Hallmark Holidays throughout the year! This should apply for any/all "special" days.

This is how it should be. If you feel up to it and can make it, great. If not, let them come to you. They should be well aware how things are with your wife (is this their mother?) There's no need to feel guilty. Sometimes just getting ourselves up and ready to go takes a toll and you have to do it for two of you! They are younger and more able to get around, so let them come to you. IF they really want you to go, then perhaps they can come help you get her ready, but it's probably best to only go once or twice a year and let them visit you at your place.

It's nice to get out, see someone else's 4 walls, have people you can carry on a conversation with, etc. but it's hard when it takes so much out of you.

Is it at all possible to hire someone a few times/week for a few hours to let you get out and about by yourself? Being cooped up all the time, esp since the virus came along, can get old really quickly! If income is low enough, some states do offer Medicaid assistance for in-home care. It isn't full time, but it can give you a break and allow you some ME time. We all need ME time! If you were a veteran, sometimes they also can provide some limited in-home care.

As for the wife who complains "...that she never gets to go anywhere, and we go many places.", can you take pictures while you are out and about with her? Even if you have to ask someone to take it with you together and be sure the background shows where you are. If you show them to her, she might still insist she wasn't there, but it's worth a try! Otherwise, try to redirect her to some old memories, places you went together, fun you had, old friends and family, etc. Short term memory usually goes first, so yes, they forget where they just went or that they went anywhere at all, but those old memories stick around longer. She (and you) might enjoy reminiscing together. Is there a photo album? That might help jog some of those memories.
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enderby Apr 2021
You are so right about the Hallmark holidays. That company has done a great job selling greeting cards by using guilt and manufacturing fake holidays. Real, meaningful visits without the staging mean so much more.
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Ellwood, wishing you a blessed Easter! Hope it is a good day for you.
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Call the children and repeat what you said here - I enjoy getting together with all of you for holidays, however it is difficult on me to get her up dressed and out and I am at the point I do not want to do it every holiday.

If they have small children, it's hard to get out on Christmas Day because Santa is coming and the kids want to be where the presents are. You could suggest an alternate day to do a family get together at your house to celebrate holidays. Then use good days for your wife to do short out of the house shopping, day trips, walks, eat out, etc - nothing that is too much for either of you.
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Hello Ellswood, I agree with you. No need for guilt what so ever. Do what you want to do and never mind everyone else. Just make sure you do not end up cooking and cleaning for everyone if they visit. I would definitely tell your children it is too difficult to take your wife out, and it would be great if they could visit in your home. I stopped having holiday parties a few years ago and visiting friends and relatives. It was too much. What a wonderful husband for taking care of your dear wife. Take care and the best to you.
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Cant you speak to your family and let them know the situation as I’m sure they will understand? It’s hard caring for someone so you need to take more care of yourself as you don’t want to end up ill would it be possible to even get a Carer to come in and help? I had similar situation but was with my mother I was at breaking point but ended up getting Carers which helped me a lot, good luck
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