No Longer a Caretaker. What am I?

Posted by billiekip @billiekip, Oct 26 10:55am

I read a suggestion about a book to read when I realized that I am no longer a caretaker. There really is no title for what I am. My husband has ALZ and hasn't recognized me for months, so I'm not a wife. On Monday I placed him in a Memory Care Facility 4 minutes from our home, so I'm not a caretaker. I am 80 and wasn't able to sustain my caretaking role as his ALZ progressed. I've reached out to people who have gone on the same journey, and they've said the placement was harder than the subsequent death of their spouse. Amen to that. I'm shredded. When I have visited, he gets up to leave with me and is totally agitated when he can't. I represent the key to the door, so I was asked to not visit for a week or more to help him get acclimated. As relieved as I feel regarding not physically taking care of him, I am wracked with guilt. We both have worked hard during our 57 years of marriage, and here I am in a lovely home, and he is in a room --overlooking a garden...but still just a room. This is an awful position. Damned if you do, damned if you don't. I was treading water before as a caretaker, but now I feel like the guilt is a wave that has inundated me completely. If anyone else has taken this step and their loved one has come to accept the situation, I would appreciate some feedback. I am a wounded soldier sharing your trenches.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

billiekip | @billiekip | Nov 1 12:51pm

In reply to @jeanadair123 "I always said care giver." + (show)

I agree with you. I wish I had used that word because that is what the job is. Thank you for pointing it out.
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norram | @norram | Nov 3 2:26pm

My husband, best friend and father for going on 60 years has been enrolled in hospice at home suffering from COPD, Alzheimer's, and skin cancer. Caring for him and myself has been a challenging journey emotionally and physically. From time to time a poem comes into my mind that I would like to share.

Shared files

Waterfall2 (Waterfall2.pdf)

verol65 | @verol65 | Nov 4 4:45pm

In reply to @norram "My husband, best friend and father for going on 60 years has been enrolled in hospice..." + (show)

This is a moving poem, @norram ! Thanks for sharing.

cindy2024today | @cindy2024today | Nov 5 8:47pm

Billie, Thank you for sharing this. I can relate to all you’ve said. I too was out of energy, nurturing. I too am no longer a caretaker in a different way. My husband of 42 years died 6 weeks ago. I was planning a move together for more support. His death took me by surprise. I too have had guilt. Should I have moved sooner? Cared for him differently, better? No matter what we do, as you said so well, we can do hard things that bring joy. We can’t stop the decline. Keep bringing treats and surprises. He will still benefit from your gentle kindness. I think you will benefit later remembering what you did to bring joy to his life now. No matter our stage of caregiving, we miss our loved person in all the stages. I’ll be thinking of you and all on this support group with care. It’s a sad journey and we need each other. Blessings online friends.

cindy2024today | @cindy2024today | Nov 5 8:49pm

A term I read a while back was care partner. That resonated somewhat with me.

billiekip | @billiekip | Nov 5 9:35pm

In reply to @cindy2024today "A term I read a while back was care partner. That resonated somewhat with me." + (show)

To me the word partner infers an equal two-way connection; helping each other. Unfortunately, I don't think that is the case for the caregivers who share on this site. Semantics are not important. No matter what name we use, the word care is the most important part of it.

billiekip | @billiekip | Nov 5 9:47pm

In reply to @cindy2024today "Billie, Thank you for sharing this. I can relate to all you’ve said. I too was..." + (show)

You have no idea how much your message means to me this evening. I took my husband out of the Memory Care Center yesterday to his doctor 5 minutes away. That short excursion set him back, spun him around and we are back to square one after the initial fairly easy acclimation to his new environment. I'm sorry for your loss. I hope you will move for the additional support because you may eventually need it yourself. Thinking in terms of retrospect is futile and just spinning your wheels. Blessings to you. A new chapter is open to you. May you have good health and good times ahead.

chris20 | @chris20 | 4 days ago

I know just what you mean about not feeling like a wife anymore. My wife and I have gone through many phases and changes and challenges in our 60+ years together, and we always felt joined and committed as husband and wife, except for a short period of time many years ago when we were close to separation, Which was a very brief time but we reconciled. When Alzheimer's happened, it started a whole new ball game. We are legally still married but she is simply not the same person. Her personality has undergone all sorts of changes, and it's hard to define this as a marital union of togetherness as we navigate these new storms and events of life. I am certainly not abandoning her, but she has unintentionally abandoned me. You can call it self pity, but that's where I am.

2me | @2me | 3 days ago

In reply to @billiekip "Thank you so much for your kind words. I've had dogs and cats in the past,..." + (show)

I don’t usually speak up on these threads, but felt I had to, Billie, to let you know how much your posts have helped me. I believe we may be a bit behind you on your journey, and you have inspired me (and I’m sure, others) so much with your love and courage. Please take good care of yourself and continue to post. Best wishes.

jehjeh | @jehjeh | 2 days ago

In reply to @chris20 "I know just what you mean about not feeling like a wife anymore. My wife and..." + (show)

I completely understand the feeling of not being a wife anymore. Actually, I'd probably say it feels more like I no longer have a husband but a patient. The good times have changed. Now, my idea of a good day is one in which he doesn't get angry with me and tell me our marriage is over. It's good to have this place in which to connect with others but, still, I am very isolated and alone. I get many good suggestion but most aren't helpful in my situation. How to keep doing this without losing my mind?