Ok here is the question? I feel like I am living in limbo waiting for the call wanting it and dreading it knowing we are near the top of the list. I have been getting respite time which I need taking two days again starting now. I find that everything is getting harder. I also feel lucky in that we have an number of good friends, none live close, but good friends who still include us. So seeing them means overnights. I am shying away as finding it too difficult is this right? This weekend was invited to dinner with two couples but would have to take Lisa to our cabin to do so. Find the process of travelling anywhere hard but doable, I am saying no. Last time we were together she said she felt nervous and of course is very quiet not really knowing what is going on and just wanting to come home.
Also just got an email from other old friends who said they would like to pop over for a few days. The thought of having house guests at this point even though everyone understand and is good with it just seems stressful and overwhelming. I am letting the walls close in on us have others Felt this way it is just too hard or should I be thankful and welcome these invitations? My worker who stays with Lisa when I get my time awAy suggests I should have our friends come but the disruption just seems too much.
I'm finding my partner can both tolerate and enjoy having friends over for a meal at home, and we are doing this several times a month. For right now. If things last too long, she has to withdraw to avoid becoming too anxious, so I limit the visits to a couple of hours only. Having the walls close in on me is one of my greatest fears.
The approach I am using is to impose on my friends, but not too much. It seems to be working. Could you tell your friends who want to visit that you would need them to stay in a motel if they come in the near future, and at the same time tell them how much you need/want to visit with them, and the importance of their continued friendship?
Thanks lindylou I have been thinking of alternatives and totally get the couple of hours part. My problem is our friends are not close and for most a ferry ride as well. I am finding that even though lisa wants to see the people she then does not know what to do or what is going on and gets nervous. Having our friends around is good for me but weighing that against dealing with Lisa sometimes just does not seem worth it.
So respite not off to a good start. At this stage noticing personally changes Lisa feels she wants to be on her own much more defiant more angry. Like kids you can do that to your parents and in this case loved one well today that behaviour came out with our caregiver, not agreeing with anything she said or wanted to do. Then when they went for a walk said I don't need you go away I am going home and took off. She went home sandy(caregiver) called me we brainstormed a bit then figured out an approach and all is better not great but better. Will see how it goes.
I agree that if they want to come, tell them they will have to stay in a motel because having people in the house is getting too stressful. As for just wanting to be alone when you have respite, nothing wrong with that. My husband started day care. I enjoy just being home alone with no one to keep an eye on or listen to repeating, etc.
This is time for you - do what you feel comfortable with and don't feel guilty if you are not joining in with others. The time will come for that but for now you just may benefit more being alone to de-stress.
I've had houseguests in the past few years, either very old friends or immediate family on my side or my wife's side. The key issue was that our visitors understood my wife's condition, and they were willing to help with caregiving, to the extent that they could. That meant that the extra stress of having other people around was offset by their contribution to making things run smoothly--not asking to be fed or entertained or whatever, chipping in with everyday household activities, taking us out, giving me more free time, and so forth. If there had been any question about these things, having houseguests would have been a bad idea, I think.
Rona, Your question seems to contain its own answer: "The thought of having house guests at this point . . . just seems stressful and overwhelming. . . . the disruption just seems too much."
Just as in "normal" (non-AD) life, not every time is a good time for having visitors. In addition to the concerns you have expressed, my concern is what would happen if you got the call just before or during the visit. If you feel a visit right now might be too difficult, you could just tell your friends that your situation right now is too fluid to allow you to make plans but you would love to see them after Lisa is placed.
Rona I had a similar situation in December when we had guest coming to stay w us in our Florida condo. I was getting stressed out so I phoned and very honestly explained the situation. I told them come and if it's not working be prepared to get a hotel room. They arrived before us at the condo had gone grocery shopping and had dinner made when we arrived. They made the 2 nights 3 days so enjoyable. Hubby had company and I got a break. When they left I wanted to hang on the car bummper and force them to stay. I did forewarn them keep your things in your room or something will go missing. Just maybe knowing I had a out allowed me to relax. I never told hubby how long they where staying.