dementia caregivers

how do you cope with a spouse that has demetia

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  • Hi Sharon,

    That is a very important and big question. 

    I have been caring for my wife, who has early-onset dementia, for several years now. My limited perspective would be that the answer to your question depends greatly on what stage of dementia the spouse is in.

    The issues we have faced and worked through were very different in the first couple of years than they are now. So how I have coped has changed over time, too.

    As far as how I have coped? At times, not well. At other times, ok. It has been and continues to be really difficult. We have two young kids, so my focus on them has helped me. Working has helped, as well, so I have something I'm doing other than caregiving (even though I work from home). Of course, with working comes needing a caregiver during working hours, which is expensive and adds another layer of complexity to coordinate. I only have caregiving help during my work hours, so that is one thing I am not doing well - I have essentially zero time when I'm not either working a demanding job or being a caregiver. Exercise has helped me - stabilizes my mood and hard things are easier when my body feels good and I have energy. Decent sleep is in this category too - everything is harder when I'm tired. (There have been streetches when my wife would not sleep, would be up wandering, which were hard weeks where quality of sleep was not in my control. But I try harder now to get good sleep when I can.) I know lots of people get support and help from friends and family. That hasn't been a good option for me given we moved to be near my wife's family where I don't know anyone, but I know others have reported this as important. I will note that I decided sometime back to be fairly transparent with neighbors, family and friends - making that change from at first keeping things 'private' helped. Neighbors have been helpful on many occasions and it has just felt better to me to be open about it. For me the situation is incredibly isolating, so anything that reduces that feeling of isolation is valuable. I hope this helps a little, it is a hard road. Last thing I'll say is to focus on things one day at a time. It is a cliche, but for me dwelling on the unknown future was stressful and not productive so I try to just make each day good. When I go to bed at night, I ask myself three questions: 1) What's one good thing that happend today?; 2) What am I grateful for?; 3) What's one thing I am looking forward to? Oftentimes I have no answer to number 3, which feels bad, so I try to find or create something to look forward to.

    I hope this helps a little. 

    Best of luck to you, I wish you well.

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      • sheri_and_kids
      • 2 wk ago
      • Reported - view

      Gareth Hancock 

      Hi Gareth,

      Thanks for writing. I'm with you 100% - Don started decling 5-6 years ago at about 68 and it's very hard for an energetic people person like me. He rarely speaks and when he does I realize he is so much worse that I thought - but he hasn't taken (and won't) his meds and does not believe he has mid-stage Alzheimer's which really makes it twice as hard but typical. I am always busy I sleep 3 hours a night but luckily I don't feel tired and am healthy so lucky me. Very lonely as you said. I just have two dogs that are my world, never had kids because I hated being one when I grew up. One day at a time is my way too but not thrilled about being in a love-less marriage for 20 years, couldn't get out because we couldn't afford to live apart and then the Alzheimer's thing. I hoped I could "get a life" someday but just sticking to today most of the time. Thank God for my "kids",

      Take care, 
      Sheri

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