Memory care for my wife: I'm having a hard time adjusting

Good morning @alanm I am Scott and I am pleased to meet you here on Mayo Connect! I was the fulltime caregiver for my wife for 14+ years until she lost her war with brain cancer, which exhibited many symptoms similar to dementia among others.

She passed away just over two years ago and I am still attempting to come to a comfortable place in my changed life. We were married for 41 years, so in the scheme of things, two years to try and adjust is like nothing! So the only thing I can really say is expect this transition to be a slow one, which does not take a smooth, upward or forward, arc. Rather, at least for me, it is far more of a rollercoaster ride.

One small thing I did when my caregiving duties abruptly ended was to keep an ongoing list of things 'to do'. I still do this and the list is not filled with big items, but rather small, doable things. Make a call to an old friend, write a note to someone, clean one drawer in the kitchen, clean places in the house that I have ignored for years, pick a book I missed that one of my favorite authors wrote during the caregiving times I had no time to read, etc. Gradually I began to add a few small trips to see friends of old, etc. I also made a promise to myself that I would never cross one item off the list without adding new item to the bottom so I always had something, no matter how small, to look forward to and to give my tomorrows a bit more meaning. This works for me, but I understand we are all individuals so it is simply a suggestion.

What part of the adjustment do you find the most challenging?

Strength, courage, and peace!

Hi @alanm, my husband has memory issues too. I'm not as far along the road as you are, but I wanted to just tell you that your post was so full of compassion and love for your wife that it touched me. I'm hoping all goes well for both of you, that your burdens get a little lighter and your days get a little brighter. Wishing you the best.

When my mother was put into memory care my father could not go and see her. It took close to two months before he could. I visited with my pastor and he said that he was grieving. That this loss was almost as if she had died. He was alone. Luckily my dad is pretty social and lives in an independent living building. My mom was in memory care for close to two years before she passed away. He visited her daily and still visits the unit occasionally to talk with those he knows. What helped my dad the most was visiting with the Pastor at the care facility and continuing to attend worship services. You start with baby steps. If you attended church, go back, attend worship and coffee and go home. Just an idea. Prayers for you.

I think I really need to get back to my church. Quit going when it got too difficult. Have said for years " when I think it is too much, I pray for more strength". I now worry constantly about the care she is getting. Thanks.

Debbra, Thanks for the reply. It is helpful. Good luck with your own Struggles. Alan

I heartily agree with the suggestion to go to church. I had been unable to attend my church for about 5 years, and when I was finally free of the caregiving (well almost as my husband of 63 years is i a nursing home) I went back and we have our own little support group that is always there on Sunday morning. Many of the people who I knew had lost spouses, but I didn't know at the time that they had dementia, gave me lots of support and still do. I'm still traveling the road but not alone anymore.

thanks, starting Sunday. It is now on my list.

Do you have family members that can go with you to the Care meetings that you will have? These are the meetings that you can discuss medications and care. I was lucky as my sister and sister-in-law were both nurses and my brother a pastor. We all attended these meetings when we could. If you have questions you can talk to the staff at any time. Medications were the biggest item with my mom. Glad to hear that you'll be going back to church!! I've started a "Caregiving" group within the congregations of my church circuit that can be of help for those who are in need. Plus to pass along lots of information as well. Blessings to you.

Good morning. I'm very happy to meet everyone! I have been caregiving for my parents over the past 10 years or so. In the last 3 years it has become more intensive. My dad, 90, has fallen many times, finally breaking his arm in December, then again in March, and again in August. My mom, 80, had a mastectomy in February. She had been slowly suffering from dementia which sped up after the surgery. She also suffers from manic depression. I finally got both of them into an independent living facility in June. My mother suffered a complete mental breakdown forgetting who I am, accusing me of stealing their money, etc. I hadn't realized how much all of this dominated my life. I feel so much better reading your posts and seeing how common this is. I will be patient with myself as I learn how to live again. I hope this is a wonderful day for all of us. Mary

Hello @merryone,

One of the most difficult things in life is to be a caregiver, but you don't have to do it alone. I'm so glad you've joined this group on Connect because you will meet many members who know exactly what you're going through – welcome!

I'm sure @kateia @mbabkk @rmftucker @jimmy48 @verilee1776 Mentor @IndianaScott and others will also join in with their insights. There are a few other discussions on Connect that I'd sincerely encourage you to view. For instance:
– When the Caregiver Needs Care https://connect.mayoclinic.org/discussion/when-the-caregiver-needs-care/
– Caring for someone with dementia / Alzheimer's https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

@merryone, may I ask how your father is coping with all these changes?