When it's over...

Posted by bclane @bclane, Oct 7 12:19pm

My husband died last month.

We all know the stress and sadness of dealing with the slow death of dementia, but I’m just now finding out that when it’s over, there is an emptiness I didn’t expect. Yes, there’s relief from the daily stress of dealing with someone in the later stages of dementia. For the last couple of years I’ve depended on medication to help relieve the stress, to release the tightness that was often in my chest, and suddenly I don’t need that anymore. No more tightness in the chest, no anxiety—just relief and grief coexisting.

But what’s really taken me by surprise is the emptiness in what was our home and my life. For the last few years, my life has revolved around him and the dementia. Because it was time, I made the decision for us to move from a home we’d been in for over thirty years to be closer to family. I took care of everything involved with the move because he couldn't.

After the move, I arranged a family member to stay with him when I had an appointment. I only took walks of 10 to 15 minutes because I was afraid of leaving him alone any longer than that. I worked out at a gym only while he was in physical therapy. I made sure I got that much exercise at least because we couldn’t afford something to happen to me, too.

He was too weak to walk through supermarkets, so I would leave him on a bench at the front of the store after getting him to promise he wouldn’t go anywhere and hurry through my shopping, not relaxing until I was on my way to checkout where I could verify he was still on the bench. I helped him with his showers, doing most of the work, supervised him brushing his teeth at least once a day, made sure he took his medications on time—well, all of you know the drill. And I dealt with the occasional bouts of stubbornness, thankful that I never had to deal with the aggression that some caretakers of people with dementia face.

And now that it’s over, my home is too quiet, and many days I don’t know what to do with myself. I honestly hadn’t expected this, but this is the first time someone I was currently living with and had been the sole caregiver for has died. Caretakers of people dying from cancer, etc., go through some of this, I’m sure, but dementia takes so long compared to so many other terminal disorders. Caring for someone with dementia becomes your whole life for such a long time.

Would I want him back the way he was the last few years? No. It wouldn’t be fair to either of us. But I miss the person he used to be, and I honestly don’t know what to do with myself now. I’m sure I’ll figure it out eventually, but I just wanted to share how I feel as a kind of heads up to the rest of you, especially those of you dealing with a spouse with dementia who is still living at home. We get so wrapped up in the daily demands of life with dementia and never think about what it will be like when it's over. Because one day it will be.

Interested in more discussions like this? Go to the Caregivers: Mild Cognitive Impairment (MCI) & Dementia Support Group.

2me | @2me | Oct 11 7:05am

@bclane -Sincere condoloences-for all you’ve been through. You have many caring people on here, sharing excellent thoughts. I so love being in this group! For me, part of the healing process, I believe is time…and a suggestion, as others have mentioned above, is maybe volunteering. Community organizations, boards, libraries, senior centers, hospitals…there is always a need. You’d probably start as “the newbie”, wondering if you made the right choice, so start out slowly…maybe a couple hours once a week….but soon, hopefully, you’ll feel a part of something very special…and maybe make some new friends.
My sister passed away at age 71. I was taking care of her at the time, way across the country from where I live. I brought her dogs home with me. Her older dog and I became a Therapy Dog team, and we visited the hospital weekly….then my son passed away. I didn’t know if I could continue visiting the cancer center, and other departments in our hospital…but I found I almost had to do it! I believe it helps me, more than patients and staff. Now that my husband’s dementia is worsening, I’m staying home more, but still plan to find a way to visit the hospital, by having someone in to stay with him once the time comes he needs that. I don’t know how to describe what a feeling it gives me to visit with my calm dog. His name is “Magic”. He truly is. My husband loves petting him, so Magic’s therapy work is wonderfully helpful here at home, too! Find something you enjoy, and start out small….baby steps! ….and best wishes!

Fred | @fred1 | Oct 11 2:43pm

kmliste, Thank you for asking and for the kind words. As far as how I'm doing - well, I was not prepared for what my life has become - However, I'm handling things as best I can. For one thing, this Mayo Clinic Connect has helped. Just sharing emotions, especially the loneliness and empty feelings with others going through the same trial, is uplifting. then there are the grief support meetings I attend. After 22 years in the military (retired in 1974), I never would have imagined myself attending such meetings, let alone looking forward to being there each week. My family has been supportive and always willing to help. I have three Baby Boomer kids, only one nearby, the other two are hundreds of miles away but call frequently to keep my informed as to what is happening in their lives.
Yes, Ann and I married in Dec. 1953. Don't know how she put up with me, and the constant transfers, but thankfully she did. We lived in five different States and two foreign countries during those years, Ann never complained, just adjusted, sometime better than I could, and continued without complaint. So....adjusting to life now, with only two dogs to keep me company is difficult at times, but they keep me busy, and are good company.
Although being a caregiver for Ann during those six plus years was difficult, at times very trying, but I would give anything if it were possible to be that caregiver again - for the rest of my life. It was the hardest but most rewarding job I ever held.
Again, thank you for your concern, hope all is well with you, please take care of yourself - so that you can take care of your loved one.

Fred | @fred1 | Oct 12 5:35pm

Will be visiting my wife at the Veterans Cemetery where she has been residing for the past nine months, then to our niece's house for dinner. thank you.