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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
Order pizza and have a nice visit and lunch together.
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.
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.
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.
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.
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.
You "sense" dementia is setting in? With what, your Spidey senses? It is clear from the post AND from the profile the wife HAS dementia.
The wife isn't refusing to go. She WANTS to go out, but doesn't remember they went. It's also very confusing and tiring for them once they are there among so many people. In addition, OP is getting worn out as he has to not only get himself ready, but her as well. It's not a walk in the park caring for someone with dementia by yourself. But it isn't made any better by posting the garbage you post.
The wife also is NOT too stupid or too stubborn. She has dementia, which has NOTHING to do with intelligence or stubbornness. OP LOVES his wife and doesn't want to leave her behind when there are family gatherings. I doubt very much he'd take your "advice" and ignore her. How ignorant.
NO ONE, no matter what the reason, should have to suffer. This is even more true when one has dementia. They didn't choose to get this horrible affliction. They don't deserve to be ignored, or called stupid or stubborn. They don't deserve to be left aside, like some forgotten toy. They are REAL people, who have REAL feelings.
OP, please ignore this one. This one has a habit of posting crap like this. A lot of it. You do what you have to for yourself and your lovely wife. Don't feel guilty if you can't join the others for gatherings. It would be better if they come to see you, preferably not all at once, as that can be overwhelming for your wife. They should bring a meal, ready made to share. They should clean up after. They should make every effort to include you without making you do all the work!