For those who care for someone with Parkinson's disease
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I need some ideas about what to do here. As you may know, my husband (dx 62 n 82) has increasing memory loss. An example-- on the 4th of June we went to his 18 year old's graduation from high school. By the next evening he did not remember it AT ALL. Barely remembers her name. 10 days ago I went to NYC for 3 nights to visit with close friends from hs/college whom I haven't seen in quite a while. He was here with daughter and caregivers/housekeeper. It went ok, tho it was hard on him when I had to stay with a familiar caregiver an extra night when my late flight out of JFK was cancelled because of terrible East Coast summer weather. So here is my dilemma. My sisters and other close family members are planning a small celebration of our mother's 90th birthday. I've been planning to go, of course, but had planned to leave him here for the 4 day weekend. He can't remember any of my family at all, does not know anyone's name. Always asks me "have I met your mother?" (We've on'y been married 6 years, but. . ) or "How many sisters do you have?" etc. etc. Suddenly he says that he wants to come and, as much as I love him, I don't want him to come. He won't know what is going on, will be confused and disoriented in a strange place, won't have his usual supports (toilet washer, tub rails, etc etc). If he comes I will spend the whole time caregiving and will not be able to join the family for movies (he gets freaked out by most movies), or going out to meals--or if I do where we go will be dictated by what he can do, noise he can tolerate etc. There will be small children there, and he doesn't seem to tolerate them all that well. So how do I tell my beloved husband that I don't want him to come with me out of town for my mother's birthday? As much as he doesn't remember things, he will remember the feeling that I don't want to be with him, and it will generalize and he will be sad and anxious and unhappy with me even though he won't know what triggered it. I'm stumped. |
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VV, I believe you should go alone to visit your Mom and sisters. The logistics would make it very unpleasant for your husband and yourself and your family were he to come with you. He is not able to reason it out and understand why this would not be good. My Mom used to have episodes of sadness, feeling like she was left out. She had to give up so many of her activities and meetings with friends that she once enjoyed. It was like everyone else was going to the ball and she was Cinderella left sitting in the ashes. Maybe what you could do is play let's pretend. Tell your DH that the birthday party had to be postponed b/c your Mom stubbed her foot and broke her toe. You could have a friend ring your phone when he is nearby and pretend to be your mother giving you the news. She's going to be OK but she will be bedridden for a couple weeks. She's temporarily in a home where visitors are limited and he would be uncomfortable just sitting there for long stretches. Tell him that you and your sisters are going to take turns staying with your Mom each for a few days and your turn will be soon. You will not be gone long and you will call him every day. While you are away, maybe one of his caregivers could pretend it is her own birthday and ask him to help celebrate. You could have some ice cream or pudding ready for a little party. they could sing Happy Birthday and make wishes. |
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Violet, I can't tell you how many times I have been in this very same position-event coming up, hubby not interested in going and we plan accordingly, then at the last minute he suddenly wants to go. I used to roll with it and pack his stuff up and bring him along, but we just can't do that anymore. I think he doesn't really want to go so much as he doesn't want to be left behind, but his coming just doesn't work anymore because of where we are in the disease....all of the activities become centered around his Parkinson's needs, how long it takes to get from here to there while everyone waits (and sometimes there's a line that we hold up for others), constant checking to be sure we're on time with the meds, do we have fluids to take the meds, he's sleepy and needs to take a nap or wants to leave, etc. We also have had the added difficulty of dealing with some violent things he's done when we're trapped all together in the car or hotel or away from home. So, as hard as it is, I am honest with my husband...at least so far  Maybe the day will come when I bend the truth, but so far, I simply tell him that we have X to do, will be gone for X amount of time, and that he can't come because (fill in the blank-he will have to navigate around hundreds of people, climb and sit on bleachers for several hours in the hot sun, etc.). In your situation, could you simply explain to him that the travel to your mom's would be too hard for him, and that you really just want/need to focus on your mom and family for the short time you will be gone? Also, perhaps if he understood that going could actually be stressful/harmful to him, that might help. I know long car trips are very uncomfortable and stressful for my husband, since he gets stiff sitting in a car for more than half an hour, and we also have to stop very frequently for bathroom breaks, and sometimes he simply cannot go, so we have to stop again 15 minutes later, meanwhile the kids are going nuts which only adds to his stress, and we're getting further and further behind schedule which doesn't help, so we just avoid all of that by having him stay home. Maybe if your husband saw that going would be hard on him, he wouldn't be upset at staying home. Good luck, and I hope you have a great time at your mom's birthday
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Well, I under estimated him. We talked about it and, despite his profound memory loss, his judgement - when the info is available to him - is still pretty intact. He had to ask me several times "what is plan A?" and "what is plan B". But for the minutes when he gets it, he is really able to make decisions. Required me to be really honest about the situation - not to skew the conversation to make him come to the decision on my own. And, he came, on his own to the conclusion that he thinks he should not go, that, if he were more capable he would want to, but that it would not really work out. He then said "we will probably have to go over this several times, because I will forget what we decided." What a guy! I married him knowing he had PD and it is moments like this that remind me that I wasn't wrong. Brings tears to my eyes. VV |
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Voilet, I am so happy you were able to talk it out with him. Even if you do have to remind him You are an awesome woman having gone into a marriage knowing. Give our best wishes to your mother. |
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I'm so glad you talked it out and will be able to enjoy being with your mom and family. I hope you have a great time
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