My spouse will tell me over and over not to do something (whatever “something” is - fill in the blank). Then when I don’t do it, I hear from people my spouse is complaining to others that I don’t do (fill in the blank). It could be from picking up items at a store to making a certain meal for visitors (visitors are the main issue currently).
For example, my spouse said they don’t want to see certain family members. Some are perpetual “pot stirrers”, they have been forever, and my spouse is aware of this. Then my spouse turns around and tells other people I won’t allow certain people to visit and he’d really like to see them! I honestly don’t know where that is coming from.
How in the hell am I supposed to live in this “smoke and mirrors” situation? I want to do what’s right. I want to honor what I believe my spouse truly wants. I remember the opinion my spouse held before dementia took a hold. Spouse was never crazy about these particular relatives. Yet, when my spouse makes it seem to others that I am the one keeping people away, I look/feel like a complete jerk! I am at my wits' end. I wasn’t crazy about these relatives either, so I am totally confused if I should have them to the house or not. I’m afraid a visit will be a disaster once they are here. They will insist on staying at the house. They come from out of state, so it’s not easy to visit. I can cope with spouse telling me not to make certain meals (and then next day asking for them specifically) however this “visitor thing” is really stumping me.
I am really stressed over this.
Please advise.
YOU now make the rules.
If you don't want to do (fill in the blank) don't do it. If you do want to do it...do it.
Again ..you make the rules so if people want to visit but you do not want overnight guests then make that VERY clear at the start.
And a comment on this, you are caring for someone with dementia the last thing you need is to be caring for a house full of guests.
People with dementia typically do not do well with "extra" noise, people, confusion for extended periods of time. And I am not talking a weekend, I am talking 3, 4 hours.
So keep visits short!
But everyone is different so take cues from your husband as to when he is tired, anxious, frustrated, frightened, confused....
Keep to a routine the schedule he is on day to day.
Keep to a regular diet, if this is going to be a celebratory visit and there is a lot of rich food that he typically does not eat that could spell disaster,.
And to make life easy on you...do not argue with him. You will NEVER win an argument with a person that has dementia.
If they don't "know how it is," they'll look the fools for believing a person with dementia over you -- and they'll realize it pretty quickly.
The last time this happened to me (a couple of weeks back, and since then I've heard I am by no means alone with this client) I ended up getting the giggles. It wasn't appropriate but I couldn't help myself - I suddenly had a strong mental image of my brain whirling around inside my head trying to keep up with my client's insane demands and expectations - and the pace of it! Give me this! Don't give me that! This! No! What are you doing?!
I couldn't get a word in edgways to clarify or to explain, and as she continued to harangue me, I drew breath and then just burst out laughing.
With the "you know I hate steak / where's my steak" issue: keep back-ups and provide replacement meals without comment. It's predictable, you know this is going to happen, so prepare for it and it won't be half so demoralizing.
With the fantasy guest list issue: please yourself and after that never apologize, never explain. Should DH suddenly develop an overwhelming urge to have a heart to heart with one of them, there is the telephone.
You say in your profile that you have no family or friends and that you're lonely, so perhaps letting folks in to visit occasionally might be good for you both.
Sometimes time itself will change ones perspective on family members, so I see no harm in letting them come to visit once in a while.
And because your spouse has dementia, you can use that as an excuse for these family members not to stay at your house when they come, as folks with dementia don't do well with a change in their routine, and with disruption. So if they really want to come, you will just have to tell them they will have to rent a hotel room, and can only stay for short visits as to not upset your spouse.
Perhaps that will change their minds about it all, and if not at least you have set some ground rules upfront.
Good luck.
I’d prefer to just say no, however I will be labeled poorly, and it could even lead to them bringing in Adult Protective Services (again, I can’t emphasize pot stirrers enough). Even though I haven’t done anything wrong…and no APS worker could find anything wrong (unless my spouse on a whim decides that they would like a visit from these relatives and tells APS this), I will be made to look like a villain. I am very fearful of this. I have no one else who sees my spouse waffle back and forth on wants/needs.
No one can keep up with a demented mind, and a demented mind isn't in the control really of the person involved.
It is up to you to make the decisions now. Own that and live that. You cannot afford the waste of time stewing about it, and it will cause you a lot of anxiety.
If you need to check in with a therapist an hour or so of combing all this out rationally will help. Try to find a private practice licensed Social worker who is specially trained in these life transitions decisions. This really will help the stress, help your decision making, allow you to make decisions one at a time, stick to them, and know you did the best you could. Remember, in cases of dementia there is no perfect anymore. That's a thing of the past.
Wish you lots of luck moving forward. It's so hard when the person you are living with is so changed from the person you loved and married.
As Grandma1054 said, "Your spouse has Dementia. All bets are off.
YOU now make the rules."
Try to stick by that good advice and put the intrusive relatives AND your spouse's wishes-of-the-moment OUT of your mind entirely. What s/he wants to eat at any given moment is also of no real concern. Come up with a meal plan for a few days or a week, write it out, show it to your spouse, and that's THAT. You're not running a restaurant or an Air B&B. What you're trying to do is be all things to all people at all times and failing at it, as we ALL would. B/c it's impossible to BE all things to all people at all times. So focus on being your best self to you and to your spouse and to hell with everyone else.
That's really all you CAN do. It's hard enough to care for an ill spouse w/o worrying about the relatives, APS and the rest of everybody and what they think. Please take care of YOU in the process b/c if you fall apart, then what?
God bless and keep you through this difficult journey. All the best to you, my friend.
Currently my spouse is fairly self sufficient. Baths/dresses self, but needs supervision…gets confused making a sandwich for lunch ( or meat/cheese would end up in pantry, rather than back in fridge) needs help selecting an outfit (or half the closet would be on the floor). Things like that. Spouse doesn’t drive anymore (Drs orders). Can’t remember how to use cell phone, can’t remember our address…remember medications to take…things like that. Yet, has said repeatedly doesn’t want to see certain people. When this is said, it’s not out of context or anything, so there is understanding there. It seems clear to me, but may not be to others.
I guess I’m trying to avoid trying to keep relatives away, then spouse telling them yes please visit, then them showing up and it being a disastrous time. I’ll be accused of trying to isolate spouse. Spouse is liable to say anything under stress. I feel very alone and unsure of what to do. I know on some level I shouldn’t care what people think, but I do.