1. < Caregivers: Dementia

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 | Oct 28 12:54pm
In reply to @celia16 "I haven’t placed a spouse for care, but I did place a relative. I was responsible..." + (show)
@celia16

I haven’t placed a spouse for care, but I did place a relative. I was responsible for my cousin’s care, after she got dementia. After seeing it was not possible for me to care for her in her home, I found an excellent Memory Care facility. Caregiving does not end after placement. There are many responsibilities that continue. She relied on me a lot and my visits were vital. I will say that much of the strain of daily hand’s on care is relieved.

I was fortunate in that I never felt guilt over the placement, only pride that I had done the right thing. Caring for someone 24/7 solo who has substantial need just isn’t feasible. It’s not fair to either person. I realized what she really needed and arranged it.

I hope you will feel better as you get a chance to adjust Some people with dementia settle in and seem comfortable, but others might not. I observed many residents with dementia over the six years I cared for my cousin. I found that sometimes with dementia a person might not be able be content or happy no matter where they are. Meds can help, but it’s not always apparent. I learned to temper my expectations.

After a couple of weeks, my cousin thought she was living in her new apartment and liked it a lot. She adored her new friends there, though they didn’t really talk to each other.

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I have hope that my husband will reach out to the other men in the Memory Care Area. He was never social; a doer, a worker who much preferred to build a structure or renovate a house than socialize. I have to curb my expectations knowing his lifelong proclivities for hard work. I think women, being more social in general, have an easier time to acclimate to new people and new surroundings. I have always been his social outlet and will continue to do so. Without the added stress and burden of physical care, I feel I am ready to go back to being Miss Sunshine. Watching people in a Memory Care Unit is like watching toddlers in parallel play. They enjoy knowing others are there, but don't feel compelled to interact with them. It is important not to project what you think they would enjoy and want to do as seen through your own eyes. This is a whole new chapter. Obama had a great line in a book, "This..sh..t would be interesting if I weren't in the middle of it." That is exactly how I feel.

REPLY
billiekip | @billiekip | Oct 28 1:44pm

Thank you, I think I do too. The Mayo writers have lifted up my wings
and I appreciate it. There is something to be said for positive group
karma . It truly makes a difference.

REPLY
Kim Webb | @mrjohnwebb | Oct 28 8:23pm
In reply to @gingerw "@billiekip You are still a wife, still a partner. This now falls under the aspects of..." + (show)
@gingerw

@billiekip You are still a wife, still a partner. This now falls under the aspects of the vows "in sickness and in health". Please don't forget to take care of yourself, too.
Ginger

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He still needs you. Once the week has gone by, you can check in on him daily to touch and comfort him and ensure he is getting the care he needs. I offer this poem to you and your spouse. May it help you find peace.

Strength at the Broken Places
(For Caregivers of People with Dementia)

Strength isn’t the force
that carries you through untouched;
it’s the quiet resilience
that emerges in the kitchen at dawn,
the weight of a long night
still settling on your shoulders,
and yet, you rise.
You thought you had to hold everything,
keep it all from falling apart,
but the truth is, you’ve learned
how to carry what breaks
and still find grace.

You imagined there would be answers,
but now you know the power
of holding questions instead.
Strength isn’t the absence of doubt,
but the willingness to move forward
even as you stumble.

It lives in the repeated acts:
the calm voice in the face of confusion,
the gentle hand that helps them remember,
the love that persists
through each forgotten name.

Strength grows not in perfection,
but in the cracks,
where hope faltered
and was rebuilt,
again and again,
shaped by each new morning.

You do not need to be whole
to be powerful,
only present,
willing to be made strong
in the places where the world seems fragile.

There is no map for this,
but there is a truth hidden in the quiet:
what you give each day
is not diminished by weariness.
It is, in fact, made more precious
by the broken places
where your love has taken root,
where it will bloom,
because of, not despite,
the cracks that let it grow.

REPLY
1 reply
billiekip | @billiekip | Oct 28 10:37pm

Thank you for the wonderful poem. I have read it over and over and will again.
I can be present, and I can be an advocate for my husband. I have now turned the page to a place where I can feel successful and better about my role in life.
The anger, fear, and frustration are dissipating and the love that had been tamped down is bubbling up to the surface again. I appreciate your sharing
your poem. It is meaningful and true. The broken puzzle pieces may never
come back together in an unseamed picture, but the pieces are nonetheless still there.

REPLY
jbur | @jbur | Oct 29 6:12am
In reply to @billiekip "Thank you so much for your kind words. I've had dogs and cats in the past,..." + (show)
@billiekip

Thank you so much for your kind words. I've had dogs and cats in the past, and no, I don't want to take care of them now. I'm flat out of nurture. 17 years of teaching elementary school and then caring for my husband has depleted my cache for now. I do have a house plant named Roxy. I am evolving as a life partner but also as a person. I so appreciate you and all of the people who take the time to share on this site. It has been so helpful and uplifting to me when I've felt depleted. I've reached acceptance of the situation and have no doubts about moving my husband into professional care. Now, I am working on my own health and finding small treats and surprises to bring to my husband to brighten his day. People can do hard things.

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Thank you for your closing “People can do hard things.”

REPLY
jehjeh | @jehjeh | Oct 29 2:05pm
In reply to @mrjohnwebb "He still needs you. Once the week has gone by, you can check in on him..." + (show)
@mrjohnwebb

He still needs you. Once the week has gone by, you can check in on him daily to touch and comfort him and ensure he is getting the care he needs. I offer this poem to you and your spouse. May it help you find peace.

Strength at the Broken Places
(For Caregivers of People with Dementia)

Strength isn’t the force
that carries you through untouched;
it’s the quiet resilience
that emerges in the kitchen at dawn,
the weight of a long night
still settling on your shoulders,
and yet, you rise.
You thought you had to hold everything,
keep it all from falling apart,
but the truth is, you’ve learned
how to carry what breaks
and still find grace.

You imagined there would be answers,
but now you know the power
of holding questions instead.
Strength isn’t the absence of doubt,
but the willingness to move forward
even as you stumble.

It lives in the repeated acts:
the calm voice in the face of confusion,
the gentle hand that helps them remember,
the love that persists
through each forgotten name.

Strength grows not in perfection,
but in the cracks,
where hope faltered
and was rebuilt,
again and again,
shaped by each new morning.

You do not need to be whole
to be powerful,
only present,
willing to be made strong
in the places where the world seems fragile.

There is no map for this,
but there is a truth hidden in the quiet:
what you give each day
is not diminished by weariness.
It is, in fact, made more precious
by the broken places
where your love has taken root,
where it will bloom,
because of, not despite,
the cracks that let it grow.

Jump to this post

Thank you for this poem. I'm going to copy it and tape it to my bathroom mirror. Reading this seems like a good way to start each day. 🙂

REPLY
verol65 | @verol65 | Oct 29 8:41pm
In reply to @lmr23 "Billie - agree with the previous comment. You are still a wife and caregiver. You lovingly..." + (show)
@lmr23

Billie - agree with the previous comment. You are still a wife
and caregiver. You lovingly sought to provide a better level of care for your spouse. I would recommend a CBT therapist for you to help ease your thoughts of guilt.
Also,
I am considering that step for my Mom who has Mixed Dementia/Alzheimers. It must be very tough to make the decision- but it is a sound and loving decision to make.

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I agree with this comment.
You're still a wife, Billie @billiekip , and a caretaker. For your own health, this was a necessary step. Seeing a psychotherapist, if you can afford it, and/or joining a local caretakers group could help you through this stage.

Sending a hug.

REPLY
1995victoria | @1995victoria | Oct 31 8:52am

I've always been curious why is it called caretaker, when it is really caregiver.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 31 5:27pm

This looks like a very interesting program for caregivers of someone dementia.
https://connect.mayoclinic.org/interaction/newsfeed_post/4221/bookmark/

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