By +Carole Larkin
+Alzheimer's Reading Room
The author of the email, who will remain anonymous, has graciously permitted me to publish her letter as a way to clarify my meaning of Personhood to everyone reading here.
In return I am giving her a short “Consult” (the service I perform for clients nationwide, when accessed through my website, www.thirdageservices.com).
Here is her email:
I just read your article on Alzheimer’s Reading Room and applaud your approach and your work. And, I have to ask this question because it is important to so many of us in my group.
Personally, to become self-less do I have to stop being a part-time minister, doing my writing, having lunch with friends, and reading things I love and having people over?
I can’t think for one minute of myself, who I am, at all?
I have to become totally self-less?
I ask this, not out of anger, but out of frustration and a deep longing to put at least one activity back into my life to balance the rest of it – including poop and pee issues and all the rest.
I never thought of myself as a caregiver as I just don’t have that in me.
So I take my husband with me everywhere – 24/7 – and he has thrived so far and made a lot of new friends.
Now caregivers don’t feel safe anymore as he kicks them out quickly, he is pushing people when we are out in public and I have been asked to not bring him to church anymore or to the beauty shop because he acts out so much.
We have also been encouraged to let go of a couple of restaurants. His disease is frontal-temporal lobe dementia. Most meds don’t work and only make it worse. Kindness and caring help most.
Would I be a less than person, a self-ish person if I had to find residential care for him, with the intent of spending as much time as I could with him and supporting him there?
This is what four professionals are telling me –“it is time. You can’t keep doing this because your physical health is starting to be eroded by all it takes to care for him.”
When I read what you wrote I slipped into guilt and wondered what is wrong with me, besides complete exhaustion.
Please share anything you can with me.
In deep appreciation,
P.S. I forgot to mention – I am 77 years old and am in physical therapy for neuropathy. Otherwise – I’m ok.
The following is my answer.
First let me say that my heart goes out to you. As difficult a disease as Alzheimer’s is, Fronto-Temporal is generally more difficult to cope with because many times you do not have the memory loss until much later in the disease, and you cannot use the memory loss techniques to help you.
That said. Let me try to clarify my use of the term for you.
Personhood in practice is not what you are referring to in your email.
It absolutely does NOT mean that you give up your entire life to serve your husband, far from it.
What it means is when you are with him, whenever it is, that you treat him as a person with a disease, not as a disease with a person attached to it; that you treat him with the same consideration and respect that you would with any other person his age.You stop and listen to what he says no matter how illogical it seems to you.
You treat him as an adult, not as a willful child.
The RESPECT is the thoughtful consideration of his statement to you, instead of flying off the handle in anger and frustration and correcting him.
In other words, taking a breather or counting to ten before you answer.
During the period of time you are taking a breather, you are saying inside your head, why is he saying this? What is causing this? Is his disease making him misinterpret what I am saying? Could he be remembering something in his past in a similar situation to trigger this reaction? Could he be expressing a need that in his current state the disease makes him unable to express?
Maybe the need is physical; maybe the need is emotional or psychological.
Perhaps he is confused, doesn’t understand what you are saying or what is going on and that may be making him fearful.
Maybe he doesn’t know how to react and is looking to you to take his cue how to respond. After all, if he knows that he “is not right in the head”, but you are; it’s natural for him to mimic what you are expressing and what you show him that you are feeling.
So if its anger, you get the same back from him; if it’s calm, you get the same back from him, at least sometimes. Well, at least your odds of calm go up.
Maybe all that going on in your head means counting to fifteen instead of counting to ten; but we think pretty fast.
Mind you, I fully realize how difficult that reaction is to achieve because it is counter to the way you are feeling inside. But the more you can do it, the better off both of you are. That’s what I intended to say when I used the code word Personhood.
Another way to show Personhood is allowing him to make the choices he can make, given where he is in the trajectory of his disease.
Sure, it is more efficient to pick out his clothes instead of showing him two outfits instead of asking him to decide between the two which he wants to wear. (Show two and only two outfits.)
Or more efficient to put supper down in front of him without asking, would he like this or that meat or vegetable?
Even if he doesn’t remember later what he chose, the important thing is at that moment you have respected him and dignified him by showing that you think enough of him to ask. That is the meaning of Personhood. I hope these two examples can help you and others better understand the concept of Personhood.
Now for the geriatric care managership portion of this article.
You say yourself that “I never thought of myself as a caregiver as I just don’t have that in me” I absolutely believe you.
Yet you are thrust into this role that just isn’t you.
It prevents you from doing the things that you truly love; the things that give YOU your Personhood. You didn’t ask for this, but here it is and you are stuck with it.
I absolutely understand.
I have had at least two clients in exactly the same position. They were not care partners (my word) innately; it just didn’t matter who was the recipient of their care, that’s how they felt.
Additionally, you have had four professionals tell you that “It is time. You can’t keep doing this because your physical health is starting to be eroded by all it takes to care for him.”
Now I can understand when one, maybe two professionals could get it wrong, but four? They’ve got to be right. Maybe that’s their way of saying that they know that there is better care available for him outside of your house, and you’d be better off too.
What they are saying to you in relation to the concept of Personhood is: Perhaps you are thinking of yourself first. What would people say about me giving him up to others for care? How could I face the guilt I would feel doing this? The marriage vows, etc…
What if he really would be better off with others physically caring for him; persons who are intrinsically care (givers) partners?
Persons who are trained to care for him physically are not as emotionally invested in him as you are and therefore may not react in the same manner as you do. What if when you visited him you yourself could be more relaxed, and dare I say, happier because the burden was lifted off of you and you could go back to doing the things that you love?
Because you have regained your Personhood, might it be easier for you to show him Personhood? If that occurred would you actually be improving both of your lives?
I think that you should at least try handing off his physical care to others instead of rejecting it out of hand. That is after you have thoroughly investigated this residential care home.
Are they licensed and inspected by the state so they meet minimum standards of safety and care? Have you evaluated the owner of the home to see how involved they are in monitoring the day to day of their residents?
Does the owner make you feel like they are a caring person and that you could trust your husband’s physical care to them? Visit the home a couple of times at different times of the day (Have someone stay with your husband the hour or two you are out of the house.)
Look at the cleanliness of the home. Are the beds made? Watch how the caregivers interact with the current residents. Go at mealtime. Watch how the residents are served their meal, what the meal consists of, and how responsive the caregivers are to requests.
Do they anticipate residents’ needs (because the resident may no longer be able to ask for what they want?) Talk with other residents families. How do they feel about the care their loved one is getting there?
In other words do your homework.
If the place meets your standards, why not give it a TRY?
Maybe trying for a month to see how it goes would work. Giving him an opportunity at better care and an opportunity to see if you are a better, calmer wife who visits him is Personhood in action.
Is he better off at the end of the month? Are you better off?
The answer should be clear by then. If yes, then let it be. If no, then take him home. That’s my advice as a professional geriatric care manager who has seen this situation before.
Again, thank you for allowing me to publish your email and answer it.
Carole Larkin MA,CMC,CAEd,QDCS,EICS
ThirdAge Services LLC
1700 Commerce St. Ste. 1605
Dallas TX 75201
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Original content Bob DeMarco, the Alzheimer's Reading Room