We have always had holiday dinners with family, until about 8 years ago we hosted. Now we cannot host and it is hard to get my wife out.

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!

Ellwood, wishing you a blessed Easter! Hope it is a good day for you.

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.

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.

Sometimes I do a casual Sunday after-church 'snacks and dessert' type gathering. VERY easy and casual. I hit Costco pretty hard for all the snacky type things and even the dessert, if I don't feel like cooking.

The thing is, my kids just want to hang out together, the grandkids are only happy if all the other grandkids are there. It's really beautiful and I am learning to let go of the 'guilt' that I am not as energetic as my grandma's who could cook up a storm well into their late 80's.

The kids try to coordinate their visits with their visits to the 'other side' of the family.

With dementia getting someone out can take all day! And at some point it can become unsafe to try to get someone in the care and then out of the car.
Tell the family that for the next gathering, holiday whatever that you will stay home. You can have people stop by and see you and your wife at some time during the day.
Having visitors spread out over several hours or even days is much better for someone with dementia anyway. A large gathering is exhausting, frightening, confusing.
Have some drinks, coffee, tea, soft drinks and some brownies, cake, cookies. (If you want to make things, great or just buy them.)
If you want to get the family used to this just invite them over every Sunday for a visit. It would be just a quick visit, no to do lists for them to tackle just a quick visit.
You need to take care of yourself and if this is what you need to do to make your life easier then that is what you need to do.

Elwood, did you go out or stay home. I lucked out, my daughter cooked and brought it to me.

I agree that you should be transparent with your family and let them know what all is involved with the 2 of you going anywhere. I lieu of going out for Easter (next year) maybe you could do something special for your grandkids at your place, like an Easter egg hunt, a special simple breakfast or maybe have them over on Saturday to decorate eggs or make Easter crafts. Something that's about 1-hr or a little more and doesn't require much prep.

Another option is to request from your family that they organize to help you: 1 team comes to help get your wife ready and they drive you to the dinner. Others takes turns being your wife's buddy for 1-hr stints; then another team takes you both home and helps get your wife into the house and maybe even into her jammies. This works if you have enough kids and grandkids.

Maybe on the next holiday you can consider an adult day care or hiring and in-home companion for the day so you can go be with your family on your own. I totally understand how tiring it is for you, but when seniors pull back on being social they run the risk of "out of sight, out of mind". That being said, only do what makes you happy.

Ellwood,

I hope that you had a happy Easter whatever you decided to do.

Here’s the thing, you are the primary caregiver which means that the burden primarily falls on you.

Not to mention that you are exhausted and may not be up to an outing yourself.

Another point is that celebrations don’t always have to be on the exact day.

You can have celebrations whenever they are convenient for you and at the location of your choice with your terms. You can do a pot luck or buy take out. Lots of restaurants have excellent catering menus.

At this point in time it is important for you to monitor your wife’s care and equally as important is to monitor your own well being.

Right now you feel that ‘going out’ isn’t the best option so follow that as your guideline.

You have valid reasons as to why ‘going out’ is not working any longer.

Your circumstances have changed and I feel that you are smart to make adjustments along the way.

We all adapt to changes in our lives. Your children will adapt as well and hopefully they will be understanding and compassionate during this time.

Continue to care for yourself along with your wife.

Are you receiving any help in your caregiving? Have you considered hiring anyone to assist you?

Wishing you and your family all the best.

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!

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.

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.

"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.

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.

Just tell them. I guess I wonder why your children are so dense that they haven’t figured this out on their own. However, you are still pretty young so maybe they just won’t accept the reality of their mother’s altered state. It doesn’t matter whether your wife remembers these occasions or not. Her participation is needed to maintain family rituals. If you cannot get one of the female children to come over before these gatherings to get your mother dressed, or hire someone to get her ready for you, your only rational alternative is to accept visitors after the gatherings are over. But you will still have to get your wife dressed decently before the visits and each child will also probably visit at a different time, based upon their personal situation, so you must take that into account also.

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

Invite the kids ti visit a day or two or the weekend before the event or after.
Order pizza and have a nice visit and lunch together.

Someone who has done the incredible caring things you have done undoubtedly raised children who are caring and understanding. Feeling guilty can exclude people; let them in by letting go of it. Guild will rob you of health and happiness. Sounds like perhaps something else playing in your head?

As an aside, I plan to expect people to make all kinds of accommodations when I get older--in fact, I'm starting now :-) just for the practice.

This is just a thought, I had family do this. Have the children host the dinner at your home. The make serve it and clean up after. Each family could bring a dish with a different child bringing the main dish each holiday. Just a thought.

In our family, when my parents were in declining health we didn’t want to give up the family gatherings. They continued at my parent’s home, the change being we brought all the food. This could be a help for you. I’d also add, while your wife enjoys going places it doesn’t matter that she doesn’t remember the experience, more valuable that she enjoys being out in that moment. You know her well and when it’s too much don’t feel obligated to go anywhere. And absolutely guard your own health, your wife is blessed to have you, but you have to be healthy physically and emotionally to continue as a good caregiver

You might ask the kids to suggest how to manage things. If they know the limitations, the energy level, the schedule demands, they might have lots of ideas. Even planning can be tiring for one. It would good for them to start planning for the future, yours as well as their own. Old age comes to all lucky people.

Be honest with your family and friends. What you described simply tells the truth.

You are very bright thinker and realistic. You hire home care for a few hours a day or few days a week. So during those times you do any chores or errands or just take a walk or a nap so you don't get burn out. also you can still host your family dinners by providing a place and say the drinks and tbleware And children bring the food. Don't be embrassed this is just a circle of life. Your children need to see their mother And. Red to step. Up and help out wherever they can. They are your children do they must have an inkling of life and with realistic glasses. It is biblicsl that children care for shed parents. Look around the amish , japanese, Chinese and all countries there are children who care for shed parents. They can also help by one staying home with mom and another take you with them on a weekend vacation. Change in routine and scenery will revive you. You are doing a good job but do tSke care of self.

You answered your own question, you are essential as her caregiver and need to take care of YOU first. If your kids cannot realize the struggles you are facing and chip in and bring food over to be with you, then you have nothing to feel guilty about. They can celebrate on their own if that's how they feel.

You express your situation very well and very clearly.

Don't let guilt rule your life. You have very legitimate reasons for not wanting to go to family gatherings or anything else. Choose the activities that are do-able for you and meaningful for your wife, even if just the temporary pleasure she gets from the soon-to-be-forgotten outing.

Whenever you want to stay home, stay home. If your children nag you about attending holiday or other functions, too bad. They'll just have to complain. You stay comfortable at home.

No one knows your wife and her mental state like you do. Family members and friends may not understand and that’s ok.
For several yrs. my elderly father (87) would still allow non-family member visitors to come for several days to a week. They’re out of state friends had always enjoyed their company and his wife’s gourmet cooking. As my step mom’s Alzheimer’s has progressed, my father had a hard time telling the truth to these friends and it was very taxing on him when they came. Pat no longer could cook. She was very confused and could not enter into many conversations. sometimes, she seemed perfectly normal. It was very obvious that she was not the same person that they had known a year earlier.
It was a process of my Dad coming out of denial and telling the truth that they could no longer host visitors in their home anymore. I recognized his great disappointment because he is such a people person and he loved the company.

If you preserve your mental health you will be a better caretaker.

Take time for yourself everyday by hiring a CNA, if only for a few hours. Have the CNA come and do something meaningful that will ease your stress. Showers? One meal? A quick workout (exercise bike if she can handle it; exercises from your doctor, even leg lifts in bed, if medically advised). You will both appreciate each other more if you have breaks.

Make a list of fun and stress relieving things you would like to do and keep the list in your car console. Do something from the list a couple times a week instead of just running errands. Take yourself off the hamster wheel for a break everyday.

As for the relatives, keep them coming if it helps You. Keep them coming if your wife feels a bit happier after the visits. Keep them coming if it helps them. Your wife doesn’t have to remember what happened — if she is happier when she rests her head on her pillow at the the end of the day, then it’s worth it.

If you shut people out, you may lose them. No one will judge. They will understand. If they judge, you never needed them to begin with.

There is no better time than now to say “No” because of Covid.

Some people may just want to help. Dropping by with dinners may ease your load. If you are not familiar with a “meal train” ask a tech savvy relative to set up a meal or errand sign up to help out.

If she can’t handle the visits but you want to see them, meet them in your off time.

You need to do what is best for you and your wife.  If it means skipping the gathering then that's what you do.  Maybe arrange for a video call when they are all together so you can see them.  We brought my FIL one family gathering after he went into the SNF, it did not go well and he was all out of sorts.  After that we arranged for the use of a meeting room and went to visit the day after the holiday or on his birthday.  He was in familiar surroundings and in much better spirits seeing us all there.  I have a cousin who is now 75+ the last holiday she joined us she drove 3 hours and when she sat down to dinner had a panic attach and left.  She has a housekeeper who now brings her a plate from their Holiday dinner and we call to wish her well but don't force her into a situation that would make her uncomfortable.

Hope you had a good Easter. Have you had heart to heart talk with your children as to what is happening with their mother and the toll it is taking on you, if not, now is the time. It can take so much time getting your wife ready to leave the house, get her in and out of the car, to wherever you go and back home again. You must do what is easier for both of you. Maybe they can do the next holiday at your home - do it pot luck. You all contribute to the meal - this doesn't mean you kill yourself in your contribution - I hate cooking anymore and buy a lot of ready made. Even at a younger age I usually brought the pickles, olives and any other little goodies like that that caught my eye. Make sure to use paper products to keep clean up at a minimum.

It sounds as if taking care of your wife is getting harder for you, do you have any breaks? If not you are burning yourself out. I know your children probably have busy lives of their own and they shouldn't put their lives on hold but it would be a kindness if they can spare an hour or two a week for you and their mother. If you haven't already done it, please consider getting in home aid a few hours a week so you can get out and recharge.

I'm sorry for your struggles and wish the best to you and your family.

I sense dementia is setting in and it will get worse and know you cannot fix it. You have children who want you to visit and she won't go. So if she wants to be stubborn and miss out on some outings, why should you get upset. She is making her bed and so let her lie in it. YOU go out and visit you children or do what makes YOU happy. It is not going to work with her and if it does, you will be pleasantly surprised. Do NOT let her behavior keep YOU from enjoying life. I learned that the hard way many years ago as many times my husband just refused to go places. So I decided I would live or go down hill. I did lots of traveling by myself (best thing I ever did in my life) and have wonderful memories. I went visiting and doing lots of things and never regretted it. It was his stubbornness that was causing harm and I was not going to let him pull me down. And if she complains and rants about not doing anything, be very firm and strong and tell her in no uncertain terms that SHE REFUSED TO GO - SO SHE HAS TO SUFFER. If she is too stubborn or too stupid, just ignore her. Live YOUR life while you still can.