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alanm
@alanm

Posts: 15
Joined: Mar 03, 2018

Memory care

Posted by @alanm, Mon, Aug 27 9:33am

After years of caregiving for my wife, I decided that for her safety and well being,it was time for her to be in assisted care. It is a very good facility and she has adjusted well. I however am having a difficult time adjusting. I know I need to get out, reconnect with old friends and start living my own life. I seem to be unable to do that, so now I am at home and very lonely. We have been together 24/7 for the last 15 years, have been married for 51 years, I have been full time caretaker for the past 5 years. Most days I go to see her and continue to help with her care. Anyone care to make suggestions. How were you able to adjust to being alone?

REPLY

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!

Liked by merryone

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.

@kateia

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.

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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.

@debbraw

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.

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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.

@rmftucker

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.

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

@alanm

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.

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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?

@merryone

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

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Hi merryone! One of the hardest things for me to deal with was the first time I visited my mom and dad and my mother didn't know me. She thought my husband and I were total strangers. About a year before this happened we moved them 2 hours away from us so unfortunately, visits became fewer than normal. After being their caretakers for years…mom no longer knew me. I still had 1 1/2 years of visiting her and enjoying her company. Accepting her for who she was. May God be with you through your struggles. Start with baby steps…or jump right in getting to be "you" again. It is a very tough road but God is there to help. Blessings to you.

@kateia

Hi merryone! One of the hardest things for me to deal with was the first time I visited my mom and dad and my mother didn't know me. She thought my husband and I were total strangers. About a year before this happened we moved them 2 hours away from us so unfortunately, visits became fewer than normal. After being their caretakers for years…mom no longer knew me. I still had 1 1/2 years of visiting her and enjoying her company. Accepting her for who she was. May God be with you through your struggles. Start with baby steps…or jump right in getting to be "you" again. It is a very tough road but God is there to help. Blessings to you.

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Thank you for your kindness. My mom thought I was her dead sister, who she hated, for the past 2 months, and then all of a sudden she remembered me and right now she likes me. I'll take what I can get. It sure isn't fun at times

@kanaazpereira

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?

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Thank you for the extra resources. My father is doing very well. He gets upset about my mother though. She has coped with her mental illness and part of that was through my dad enabling her very demanding behaviour. It's hard for him to be with her sometimes right now. He is enjoying the activities and the food though and looks about 10 years younger since having his physical needs met and not having to worry about their safety anymore.

Hi @merryone, your description of your struggles is so genuine and personal that I just sat here feeling for you – and feeling like I really relate to what you are saying. My husband has Mild Cognitive Impairment – they have never been definitive on whether the etiology is vascular or Alzheimer's-type. Regardless, this is such a cruel and frightening disease. And yet, somehow, I believe that the fundamental feeling of love and compassion we caregivers have gets through to those we love – even when they don't know our name. I just have to keep believing that. I'm going to echo what others have said. Stay on Connect – it's just full of kind-hearted people who REALLY care. Also, I'm glad your Dad seems to be thriving. Does your mom get along reasonably well with the staff? Sometimes it seems like they take out all the hostitlity on those their loved ones and actually do pretty well with true strangers. Wishing the best for you and for them.

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