House guests for two weeks -- what was I thinking?

tigersmom

We are nearing the end of week one of a two-week visit from my two sisters, and I am wondering what I was thinking when I agreed to it. One of my sisters has been a big part of my support network - we talk on a regular basis, and she and her husband FaceTime with both of us on a regular basis. But last week she and my other sister arrived for a visit that won't end for another week. My DH loves my family, but on this visit, he does not seem to recognize them. On day two, he came running into the bedroom to tell me there was "a female on the phone" in the guest bedroom. It has not gotten better since then. Today they went out to tour the neighborhood and I made dinner for us all. He asked why I set the table for four people. Tonight, he asked how long these people were going to live here. It does not help that they are both vegans, and I have spent the week cooking food he does not recognize and frequently does not want to eat. I estimate my husband is mid-stage 5, but I was not prepared for him not recognizing someone he talks to on the phone on a weekly basis. He gets angry a lot in the afternoons, and the whole thing seems incredibly disorienting to him. He has been much worse, behaviorally, for the last six days. My husband always loved my family and was the world's most social guy. But I feel like I have made a big mistake here. One sister is departing tomorrow, but the other will be here for another week. So I am wondering, at one point in your LO's illness did you simply say sorry, I can't have guests anymore?

loveskitties

Having a routine is important for those mentally compromised. Things at are outside that routine are worrisome to them. He is just not able to understand "visitors", overnight guests, etc.

Pat6177

Tigers mom, sorry you haven’t been able to relax and enjoy the visit with your sisters. I do agree with loveskitties that a disruption to the routine causes discomfort and irritability. My story of the moment is a bit similar. I guess my DH is early stage 5. I have had new windows installed, then a visit from a good friend that is our backup POA and the outside of the house is now being painted. It will be the last of the major home maintenance projects now since I see how disruptive it’s been for him. For both the window installers and the painters, he does not remember what they are here for. Or why the work needed to be done. So he keeps asking what these people are here for. I can’t imagine how nerve wracking it is to have strangers in and around your home, your safe space, and to have no idea why they are there. Luckily, my friend did not stay at our house because we have an elderly cat that howls so we have to put him in the office at night which is right next to the guest bedroom. She would not have gotten any sleep! But DH was able to rise to the occasion and showtime enough while she was here. Before she came, he said he couldn’t picture her so I showed him pictures and talked about her. I think it helped but who knows. She also was only here for 3 days. I’m not sure why he was able to deal with my friend’s visit when he wasn’t able to cope with the window install. It’s all so individual.

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Quilting brings calm

At the very least, tell your sister that your spouse is not vegan and isn’t capable of dealing with vegan meals. Tell her she is welcome to fix her own food, because you will be preparing only one version of a meal and it will be what he likes. Continue that theme with watching what tv programs he likes etc.

In other words, revert back to your normal daily routine. Rather than the focus beimg on her. That should help him a little. If your sister gets bored or angry, then she gets bored or angry. She can adapt, he can’t. Maybe that will convince her to leave early

harshedbuzz

Tigersmom-

My take on this is a little different.

Before my dad was diagnosed in the mid-stages, dad was as you describe your husband when he had visitors. My parents had moved away when they retired in 1999. Initially they moved to a golf course community near the beach and built a house with the intention that family would visit. In 2003 they bought a winter place in Florida with the idea we'd all visit there as well. And it was great until about 2005 when dad's personality took a turn to the dark side.

Without a diagnosis to pin the behavior on, people were offended and dropped my parents. My mom's sisters, his brother, their grands, long term friends who'd bought in the same community stopped calling and visiting. I was the only one who made the trek the last 5 years before I moved them back here. I timed my visits to arrive after dinner on Friday and leave after breakfast on Sunday. Like you, mom always said "he's not usually this bad" when I was there, and he started getting worked up. His behavior was very like a toddler competing for attention. The end result was that she became very isolated.

By the time dad was diagnosed and I'd moved them back, he could barely tolerate drop-in visits or holiday dinners. We compromised on doing them at their house because my mom deserved a little celebration-- we came, we cooked, ate, cleaned up and left. Dad alternated between retreating to another room or insulting us.

I feel like 2 weeks is a long visit for anyone not providing hands-on care to stay. I also seriously side-eye adults with special diets who expect to be catered for-- they could prepare their own meals. Or you could have created additional helpings of DH's favorites in the weeks ahead to create a freezer stash of familiar meals for him.

I feel like you need to find a compromise around this. Two weeks hosting is not an appropriate ask right now. But if you're old enough to have a spouse with dementia, you are old enough to have limited time left with others you hold dear. Some things can't be put "on hold". Perhaps the answer is respite care for your DH and meeting your sisters somewhere for a quick girls' trip.

HB

Denise1847

Dear Tigersmom,

My family has always come to our home to celebrate all of the holidays. It has become too much for me (as I have a failed back surgery and spending long hrs. in the kitchen causes alot of pain, plus doing all of the prep since my DH can't help). I had become resentful of their insensitivity of our situation. I reached out to them and told them this and asked that they start a schedule to share in the holidays. I still don't think they get it, but they are taking some responsibility. I share this because I am pretty sure family and friends do not understand the challenges and struggles. I don't think it is because they don't care, they are just oblivious. Please totally inform your family of the difficulties, the effects on your DH and you. Actually ask for help from the sister who is still there. She will either rise to the occasion or go home on her own volition.

Ed1937

I think the answers above are all very good. One other unlikely possibility is that he has a UTI causing this. More than likely it is not, but it is due to the disruption of his "normal".