Starved for affection/attention

Good morning @judimahoney My name is Scott and as my wife's caregiver during her 14+ year war with brain cancer, which gave her a multitude of dementia-like symptoms, your post caught my eye.

Changes in our loved one, due to chronic disease, is a tough journey. In my wife's situation, her mental state and capabilities often could change multiple times in one day. I had to teach myself to appreciate and relish what I could in each phase she lived through. It was a tough thing to learn to not pine for the past but I found that when I did that, all too often I missed what ended up being gone too soon. My dad was an alcoholic so I learned the mantra of living one day at a time from that and it became one of my guiding principles as I spent my years as a caregiver. Sure, I still missed a lot of things my wife did in her prior, healthy, life but now she was in a new life that was far different and required different things from me. I came to deeply appreciate when she'd simply use my name or ask about someone in our family or a friend. I also came to highly value when she'd just give me a smile.

Caregiving is never easy and what it demands of us is often extremely hard as you know too well.

You aren't alone in this and I found the caregiving groups at Mayo Connect a huge help. I'm happy to answer any questions you might have, too.

I wish you strength, courage, and peace

I’m so with you. Wish we could take a walk and share but this connect feels like that sometimes- like we are walking together. I miss my husband too- the one who could plan a vacation, a surprise party, a romantic evening; the one who often initiated hugs. But he was also the one who complained about spending and obsessed about finances, and could be over controlling. Now I am in control and in some ways feel autonomous but also often feel alone and afraid. He has surrendered all executive functioning, driving, planning and even making sense of usual decisions, but I am savoring the moments when we can laugh and still enjoy our children and grandchildren and watch a movie together as long as it is light, and more as long as I initiate….
Have no idea what our future looks like, but I am learning to appreciate the present and let go of my attachment to a past and expectations of what I thought our aging years would look like.

Hi @judimahoney, I never cease to be amazed by how differently dementia and Alzheimer's Disease manifest themselves in our loved ones. My husband has become very appreciative and affectionate, more than he was before the onset of Alzheimer's Disease.
It could be that your husban'd's perceptions have changed and touch feels different to him now. Maybe it hurts, feels invasive. At any rate, it makes him uncomfortable. It sounds like you can both still share a joke, and he's not violent or belligerent to you.
My husband went through a period where he was loathe to shower. He broke his hip, the tub was taken out, replaced with a shower bed and grab bars. It was easier to get in the shower with him than give him instructions from outside. He doesn't resist taking showers anymore. When I asked him about it, he said he didn't want to take showers because he didn't know what to do.
Maybe you could broach the subject of touching with your husband, if the time is ever right, and ask him how it feels.
It won't be the same, but indulge yourself with self care. Do what you enjoy, what feels good. Once in a while, I go for a massage. I use an infrared heating pad to bathe my sore parts in warmth.
We caregivers all step up, do what we must, and often put our own needs on the backburner. You are not alone. We all go through a grieving process, and it takes time to come to terms with and accept changes in our loved ones that have no rhyme or reason.
Take care.

Yes, soul crushing is exactly what it is. My situation with my wife of 60 years is that way, as her ability to give affection or meaningful conversation continues to decline. I ran across the following in a book by Nina George, which was valuable for me, maybe you will find it helpful:

"She loved him as she could, not as he might want. And if you could come to terms with the idea that you'd never be loved the way you wanted and only the way the other person was capable of loving you right then, you could rest easy."

My lifetime soulmate is not able to return my affection as I would like her to, but that's not her fault.

Thank you for your words!

@judimahoney - The lack of intimacy can be devastating. It’s possible it’s a stage he will pass through. It’s not usual for the person with dementia to go through a stage of extreme self-centeredness. It can happen while they are still functioning fairly well. It’s a survival mechanism that helps them adjust to coping with everything that’s happening to them. I went through this with my husband when I was diagnosed with breast cancer about a year ago. When I shared the diagnosis with him, he rather callously answered “They can just cut it out and you’ll be fine right?” That was truly not the response I expected from my loving, caring, compassionate husband. I can’t speak for what would work for you but it was my faith that got me thru that season. He has since returned to being touchy-feely with both of us taking the initiative. Since the emotional, intuitive side blooms as the reasoning and rational side diminishes, I make sure that good feelings are associated with contact, sometimes in the form of complementing him, reassuring him, and telling him how important he is and how much I love him. Sometimes I get a chuckle and sometimes I get a loving response. It just depends where he’s at in the day. You’ll become more important in his life as he realizes how much he needs you. Use this time to build trust so he knows you’re there for him, and that could make the touchy-feely bloom again.

Last week my LO sneaked out of our local grocery store & walked 3 miles along a highway. Local police brought him home 5 hours later. Yesterday a social worker with Adult Protective Services showed up at our home during a snowstorm & asked me if she could help us. When she heard we are not on Medicaid she had no ideas for me except to ask if I had thought to ask our children for help. So 1) Why do “helpers” insist on telling us to ask adult children for help, as if we are too stupid to consider that? and 2) Can Adult Protective Services punish me somehow for my LO’s act of leaving home? Okay, one more: Do any of you lock your LO in your home?

Does your husband still know who you are? My husband is at the point he doesn’t know who I am a lot of the time. Especially during the night even asking me to leave and go home, he even offers me money to leave. Breaks my heart!
Occasionally my husband still calls me by my name and it makes my day.
Maybe your husband isn’t sure who you are, so it makes him uncomfortable to be affectionate.
With this awful disease we lose them twice! When they no longer know who we are and when they pass away.

First, I am so sorry you had to go through cancer treatments while being a caregiver. Hugs, hugs to you.
I can hope that this lack of affection stage will pass. I am happy you shared this phase may be over after a while; I will hold on to hope. Thank you.

Thank goodness my husband still knows who I am.
I am very sorry your spouse sometimes does not recognize you.
Thank you for sharing, and hugs to you.