lack of interest in travel, activities, old hobbies

lizblock

My husband stopped wanting to travel several years ago. Now, he doesn't even want to go to a cabin we built in the mountains. How do others cope with this? I feel like I'm destined for a life that is not really living anymore.

upstateAnn

I think many of us go through this. My husband can no longer travel because of the combination of dementia and severe Afib that leaves him exhausted. We loved to travel: several trips to Europe, Turkey, Central America and Southeast Asia, as well as all over the USA, and NYC at least four times a year. I was very down, but there are ways to cope. One child stayed with my DH so I could have a lovely visit to New England to visit family. Another is giving me a weekend in October and I am going to a spa for a night. I really missed my DH when I went away but I realized I also could have a good time by myself. I also have spent a lot of time making our house really comfortable. We can birdwatch from our deck, and I find new joy in gardening. Also, every day I try to do a thing that gives us joy together. Yesterday it was going on an art walk, Monday we are tabling at a Labor Day event. I also have my living memories. Last night I remembered how my husband rented a car and made a tough drive from Bodrun on the Turkish sea coast up to Ephesus to see that magnificent site. I have learned to cherish my memories while living in the day. And I read constantly.

justbreathe2

lizblock, I can relate to how you feel.

My DH and I always had fun trips together and had planned to do more after retirement. After retirement we did a few trips then gradually it stopped. DH didn’t want to travel anymore, but didn’t want to hold me back. Started traveling on my own. Great trips but I missed my DH. Now I look back I realize this change in him could have been the start of his dementia. DH would have worried and never agreed to it. I thought it was aging and being stubborn.

DH was diagnosed with MCI six months ago. DH memories of us are gone now and doesn’t remember my trips alone. My last trip was right before Covid. I could not leave him now, but I do try to get out of the house for few hours often. I am so glad now that I took those trips when I could leave him. DH memories of us and our trips together are gone and it breaks my heart.

If there are others that can help with your DH, I would say maybe take a short trip on your own or with a friend. Sorry I cannot offer more advice. It is a lonely time. I see other couples doing fun things together and I am happy for them, but admit a little envious of those times.

Pat6177

Thanks for your post. I’m really feeling sorry for myself right now. 2 good friends are off in the am for a 3 week trip to Scotland and England. Another friend is either on a trip visiting family or on a cruise every 2-3 months. And me, I’m realizing that if any of my sibs were to die before me, I probably won’t be able to go to their funerals (I live quite a distance away). DH is Stage 5. He had trouble traveling on our last trip to visit family in 2019 and I wouldn’t even attempt it now. But he’s not progressed far enough to leave him in respite care. We don’t have kids or family around here and DH is very much a loner and would hate having someone in the house with him 24/7. So what tools do I have? I try to have an attitude of gratitude. DH is generally good natured. He is not aggressive or violent. He is not incontinent. He feeds himself. Yes, he is spending more time sleeping in his chair or just day dreaming. But he seems content with that. I am grateful that Covid triggered the ability to do so many things from home. I do Bible study on zoom. I work out with a personal trainer over FaceTime. I do yoga class on zoom. I do more shopping online. I don’t use instacart yet but I’ll be grateful it’s there when I need it. For me, I need to accept where we are and be grateful and learn to accept it and make the most if it. I feel better just writing this!

ButterflyWings

Pat, I do believe the change is part of apathy that comes with dementia. Other factors may be at play also, like anxiety etc., that may be under the surface in addition to disinterest. Both of these definitely showed up with my DH increasingly in the early stages before I realized he was changing. He did not want to go anywhere, so I went anyway and a couple of times he pouted. Also uncharacteristic of my LO pre-diagnosis.

Note: respite stay is for whatever stage your DH is, if not safe to leave alone for extended periods. And that happens earlier than most of us realize. You may have to come up with a whopper of a fiblet and just drop him off with little advance discussion (the members can help come up with stories to tell him), but your freedom and fun, periodically, is important to making it through this long journey in one piece.

One other thought: dementias are so very unpredictable. Just because he does not tolerate something now, does not mean it is off the table for good. I was locked down with my DH for most of Stage 5. It was not due to the pandemic, but dementia. He refused to leave home together even to run errands, though he still would have eloped & wandered during sundowning daily, by himself. But surprise, surprise: now, in late stage 6, the switch has flipped and he will cooperate with me getting him dressed and out the door, with none of the over the top resistance (refusal!) of the prior year. So, we've been able to travel some again, albeit quite scaled back and me still on 24/7 caregiving duty -- only it is caregiving on holiday in a lovely getaway setting which lets us both relax and restore.

I really like your gratitude list. Don't give up on a longer respite trip for yourself though. One way or another.

GG06

lizblock, I have been struggling with these same feelings, but for different reasons. My husband has always been extroverted. It's one of the many qualities that drew me too him. I'm more of an introvert. Anyway, years ago, he started changing. He did not want to be around people. Didn't want to go out to dinner or socialize in any way. He was depressed and angry. That was also the same time he voiced concerns about his memory, and I noticed changes in his speech. I think he realized something was wrong.

Fast forward to January of this year and he has returned to his extroverted self. He is happy. No longer angry, stressed, or anxious. He also thinks his memory has improved and has no awareness he has FTD. He has anosognosia. Now he wants to be around people and go out ALL of the time. That would be wonderful if he had the social awareness and skills of an adult which he doesn't. He behaves like a five-year-old boy. He talks to everyone he sees - many times making inappropriate comments. At restaurants he will try to engage people at other tables. He dances everywhere we go - doctor's offices, restaurants, stores, anywhere. He has always loved kids, so whenever he sees them, he tries to talk to them and asks to play with them. His behavior doesn't embarrass me, but other people do not understand that he has dementia. He is only 64. I can usually tell them, but it is always a stressful situation. He gets angry if I try to re-direct him or say we need to go. I have no control over what he does.

As much as I would love to go to a restaurant, go to the beach, go anywhere with him, it feels too stressful for me. So, I stay at home and feel stuck. It's mentally exhausting. I want the life he has remaining to be happy and fulfilling, but also want to keep him safe. It's so hard.

toolbeltexpert

Liz when I read your post it reminded of something I did. Before my dw was real bad I bought her a garden building that needed work she went with me when I bought it and when I did the prep work to get it moved. I put a new roof on it, insulated it wired it with a ceiling fan I paneled it. I called it Judy's cozy cat shack. She never went in it. I let it go with the house when I sold it. All the plans of mice and man! Yep all the things I thought about what retirement looked like changed with her ever changing Alzheimers. Now every month I pay for a cruise to nowhere. That's about what it cost a month. Now I would live to take a cruise, but alone nag.

But life is worth living it's just gonna look a lot different. Starting over is not easy for sure.

Denise1847

Hi Liz, I understand your feelings. We used to travel several times a year. We went to Italy in April 2018 and I fell in love with it. I wanted to go back and travel more extensively through Europe. Then came the Alz. diagnosis and our lives were torn apart. We did 2 more cruises, one in 2022, but that was rough.

I feel by the time this is over (I feel so selfish even thinking like this), I will be too old to travel. Thank God I have such great memories of our travels. Many people have never been out of our state.

SDianeL

I know exactly how you feel. My DH and I were traveling full time in our RV 2 years ago until his diagnosis. He can no longer drive so we sold the RV. He won't go out to eat anymore. I learned the reason is that the menu is overwhelming and he no longer recognizes or enjoys certain foods. Every task is overwhelming to him. If you haven't already, please read the book "The 36 Hour Day" it helped me understand how the disease affects their behavior. It causes anxiety, depression, sadness, fear and anti social behavior depending on which part of the brain is affected. I moved us into a small manageable apartment and we just stay home. Sometimes I feel like I'm in prison after putting the brakes on my life. I do have respite care one afternoon a week to go run errands and go to my doctor appointments or go visit my sweet sister who also has dementia. My family all works and friends moved away or passed away, so If I do anything it has to be by myself. So I have decided that as his primary caregiver my focus now is on him. Keeping a routine helps him. He likes to reorganize things and I get him to help me clean. I find other things at home to occupy my time. Read, do genealogy, put together puzzles. I thought about respite care for a week to go on vacation to visit my son & his family in another state but it means putting him in a facility and I know he wouldn't be happy there at his Stage (He is now in Stage 5 going into Late Stage 5) so I can't do that. If I take him somewhere it's too stressful for both of us. He gets agitated and angry and chatters constantly. Last time I took him to my niece's house he fell in the yard so I no longer take him to visit family. If you have friends or family that could stay with him for a week, you could go by yourself or with a friend. Please keep us posted.

brooklynborn123

I know exactly how all of you feel. I love traveling, trying new foods, hiking etc. My DW does not want to do any of those things. It's very difficult seeing friends and family on social media going all over the world and enjoying themselves. I also fear that by the time I have the freedom to get around more, I will be too old to take full advantage. Ah well.

We also have a beach house that she no longer wants to go to and---even when I can get her there--she will not leave the house. I understand why this happening--she likes/needs to be in her safe place. I have taken to calling the corner of the couch she always sits at "headquarters" because piled next to the spot is all of her "stuff"--in theory that should make it easier to find but she still loses things all the time. We have attached tiles to them, which is a big big help.....as is this forum!

sandwichone123

GG06, my dh is heading toward that stage. I take him out for lunch every Sunday, but he is getting more inappropriate. He used to wave at babies and toddlers, and now he "toddler waves" at older kids which is a little peculiar-looking. He also makes comments that sound fine to him, but are really on the edge.