FELLOW SPOUSAL CAREGIVERS! I'm interested in learning about other stories. Let's compare notes.

I cared for my husband with Lewy Body Dementia for 10 years, all of it in our home.

The nature of our relationship certainly changed. To begin with, it improved somewhat with the diagnosis. I suddenly had an explanation for strange things going on. I now longer thought that he was just not paying attention out of disinterest -- there was a physical reason he couldn't pay attention well. So instead of becoming exasperated, I was sympathetic. Big improvement in our relationship!

We had an especially egalitarian relationship. Now instead of having an equal partner I had a dependent. I very much missed having a partner. I was lonely.

I was still working; he was retired. We shared household tasks, with him perhaps doing a little more since he retired. Suddenly I had to do all the tasks I had been doing, all the tasks he had been doing, and a whole bucket of new tasks related to taking care of him. The triple-whammy was overwhelming sometimes. As I got more help it was more manageable. Lowering standards helped some, too. I don't know if this had a direct impact on our relationship, but it sure did on my energy levels.

My husband understood that he had dementia and that I was taking care of him. That helped enormously. The phase when he was paranoid and thought I was stealing from him or lying to him was extremely painful for me. I don't think I could have handled that for ten years! Fortunately it only lasted a few months for us. Most of the time after that he trusted me to look after his best interests. Sometimes we had conflicts over what his best interest was, but mostly it was a trusting relationship.

In a way that is difficult to describe, his disease brought us closer together. He needed me. I was there for him. Superficialities were stripped away. The core of our relationship remained strong.

Joleen, what is SPI? Could you explain that briefly?

Wow jeannegibbs! So much of what you mentioned resonates deep with me. My husband and I are 31. Were high school sweathearts and have a daughter and had been married for just a few months before he was in a motorcycle accident two yrs ago, which has left him with his left arm being his only full functioning limb. Sorry it was a typo, I meant to say SCI for spinal cord injury. These past two years since his injury has sparked a roller coaster of emotions. To start with, it Involved trauma, fear, pain, triumph, and now hope is all we have to hold onto. And not hope for him to get better but hope for us to be able to better adapt and adjust our lives to what we have been dealt. Immediately after his accident, he was asleep in icu for 4 weeks and every single day was gamble of whether he would make it or not. At one point his heart actually stopped and I walked into doctors performing cpr. At this point there I fell to the floor and realized there was no fighting it, and I whispered to him that I am behind him no matter what. We're from Guam and it is the greatest misfortune that we've had to endure most of our recovery without our pillars of strength, our families by our side. Because Guam lacked the proper medical care for him, we had to move to the PI and then to Wa to get proper medical care. Don't get me wrong, my did all they could in every way possible by making visits and throwing fundraisers but leaving home was very hard for us. After his 4 weeks in icu, we went to PI for 4 months, returned home for several months, then moved to Wa this past year. With his moms passing right before we left for Wa. Despite how hard it was for us to be away, this move to Wa was completely worth it. The rehabilitation center in Seattle taught us so much to better adapt to this new lifestyle. Just to give you an idea of what our life was like before we moved out here, we were you tubing how to transfer him into a car, and had to figure out a lot of things in our own. Guam has decent hospitals but lacks specialized doctors.
As for our relationship, I felt exhaustion and completely overwhelmed from my responsibilities. In order by priority, I was a caregiver and case worker for my husband (he needed advocacy for his medical care and insurance), having to take on the duties of both parents for our daughter, working and doing grad school full time. At this point I think we were most distanced from each other. I remember him talking about how I never looked him in the eyes anymore cause every time I was around him, I was too busy tending to his needs. And the sad truth was that he needed me as a caregiver more than he needed me as a wife. It wasn't till shortly before we moved out here that I quit my job that I had more time to be a wife more than caregiver. I'll never forget the moment I realized the importance of a caregiver and how they respond. It wasn't just about caring for his physical needs but I realized how those physical needs connected with his virtues and who he was. Things like his integrity and self-worth connected to how I cared for him and how I treated him. It was a complex web that that Im sure I probably could never fully understand.
After moving out here and getting better education and resources we were more equipped to start adapting to this new lifestyle and his disability. Our relationship now, I can only describe as cosmic, deep and grounded. Sure we still have our days where hope runs thin and when we've seen each other at our worst. But the foundation we've built to get to this point feels real and solid. Idk I hope I'm making sense to some but it's a whole new kind of love I feel. I loved the way you described your relatuonship being stripped of superficialities. It's a beautiful depiction of the strength that comes out of two individuals who have faced pain and suffering together.
Sorry I know I kinda went on at some points but I felt these were all important steps to realizing how we got to where we are now. I may have even left some out😊

Hi Joleen - good topic!
Just as I started typing this, my dh spilled his mug of coffee, with cream, onto his expensive laptop - the keyboard and trackpad especially.
He has parkinsons, has very poor vision, and several other challenges. Being caregiver to a spouse is different from caring for others (I am long-distance caretaker for one of my sisters too). Marriage is complicated anyway, without health issues! Through all this, I have discovered some strengths I didn’t know I had, most important that I am committed to this marriage and to this man to whatever end.
I’m learning that while it is helpful to make lists and plans, and to prioritize all the things that need attending - everything is up in the air and will change in a moment. I used to lament that i couldn’t get to the things i wanted to do, that helped me feel creative, and then it became the things that must be taken care of that i wasn’t finding time for, like paying my sister’s bills on time, and some other fairly major things. My husband’s crises supersede all.
I ‘snapped’ the other night. My dh wakes several times per night, and I have reduced the amount of anxiety this creates in me by adding night lights with a remote control he can use, and recently a bedside commode. If he uses these things in a way that has become normal, I don’t completely wake up, but if there is an odd shuffle, stumble, groan, whatever, i am instantly fully awake and no matter what cannot return to sleep for a very long time. I feel the effects now of needing more sleep. Back to snapping - he woke me to say he was cold; he could have turned on his electric blanket, but he wanted to snuggle up, to me, the little teddy bear. Usually that’s a nice idea as I’ve been unable to sleep anyway, but I was at last in a deep sleep, and suddenly wakened, I yelled “I hate you” (This is entirely out of character for me.) He said No you don’t. I said “You’re killing me.” He was so sad and wanted to know what he could do for me, he was so sorry to have wakened me - and all I could do was cry out loud, with tears. It felt good to cry! He held me and just let me cry and eventually that released my anxiety, it felt like he was still my hero, and we both were able to go back to sleep.
Normally I don’t even come close to snapping. My new-found strength is in helping him not feel like dirt when he makes a mistake due to Parkinsons clumsiness, I can calm him (and myself in the process) and focus first on his feelings and second on fixing the problems. And that’s what i did this morning. First, no hot coffee was spilled on him, so I took the laptop and quickly turned it over onto a clean terry towel, so that the keyboard was resting upside down and flat on the towel. I let it drain while we mopped up everything else. We talked calmly and laughed. Then I wiped up around the keyboard and gave it back to him. The laptop works as before, and looks better now that the spilled coffee washed off some old dried spaghetti splatters.
I have big plans for the rest of the day, including a small dinner party here tonight. Wish me luck.