Owning our loved one's disease, what does it mean as a caregiver?

storycrafter

What do you think the term means, "owning it," in reference to our spouse's illness? What does "owning" something in counseling jargon refer to? What does it look like?

Is it simply another way to look at acceptance? If so, what does fully accepting the dementia journey really mean?

Whatever Acceptance is, is it possible to stay in it 24-7? Is it feasible and healthy to do so?

In grasping and absorbing the reality of our loved one's disease, when we're finally able to really "get it," when we know, at least to some extent, the complexity and depth of the impact on our lives,... how do we keep rising over and over from the inevitable, constant repetition of stress, grief, and adaptation as they continue their hopeless decline?

When this pattern goes on for years and years in some cases, what are the on-going long-term effects on our own brains? How do we keep our resilience and recovery in the face of the seemingly never-ending onslaught?

***

Sometimes I have glimpses of "reality." And it takes my breath away, the wonder of it, the breadth of it, the profound effects of BvFTD (dementia) on our 44-year marriage. It's sometimes like someone whips away a curtain and I suddenly see the enormity of the changes. It's so brilliant it almost blinds me. It takes time to absorb and discern what it means for us. Then I begin to make fumbling steps forward, alone, into the murk which returns.

My grief/dementia counselor tells me I need to "own" the disease. I "get" that I need to accept the facts of the matter. I thought I had; a million times I thought I'd already "accepted" our new trajectory. But she says I still need to really OWN it. I'm trying to get my head around what that really means.

Maybe it's my blind spots she's seeing? I see some of my blind spots too. She's helping me with them. For one thing she tells me I need to trust myself and myself only. Trust.

Looking back, when I married my husband I implicitly trusted him. All these years I've trusted him completely. Trust with a capital T. Now I'm being asked to not trust him. I'm finding it so hard to let go of the habit of Trust between us. I'm just now learning how powerful that trust has been.

And now I must let it go. After a lifetime of collaboration, I must trust only my own judgment and evaluation of things. At a time when I'm aging and my skills are naturally waning, Life is telling me to rely only on myself. It sounds so simple and logical, "trust yourself." Of course, we all must trust ourselves. Somehow though, this time it's different. Somehow it's a complete, entire, whole paradigm shift. ....

Thanks for being here and for listening thus far. You are amazing.

M1

Storycrafter this may sound cynical, and not to diss your counselor, but that sure sounds like therapy jargon to me. I might ask her what that would look like to her and how she thinks that would help you. I'm sorry, but no one who hasn't lived this has any idea.  Trust your own experience.

RickM

Whatever Acceptance is, is it possible to stay in it 24-7? Is it feasible and healthy to do so?

That inevitably is the question.  It's one that only you can answer. And how do you answer it given all the variables, all the possible consequences; and, you must answer it on your own, without your partner who has been there to help you answer these big questions in the past.   How do you TRUST yourself?

I don't know. Wish I did.

Best to you.

Just Bill

I am not sure what your counselor means by "owning" something but usually it means to take and accept responsibility for something. Perhaps emotions ? It is a challenge to control your emotions while going through the emotional equivalent of a slow motion car wreck where you live and your spouse doesn't. PTSD will come after our spouses are gone. Right now we are going through CTSD. I just made that up, the C stands for current. Our PTSD is in current development. I think if I was in the counselor business I would tell everyone to stay in the moment as much as possible. No time travelling by overthinking the past or the future. Find your happy moments and keep on moving forward. Some days you are just going be in emotional pain but it is temporary, it will pass. I don't think we can look at happiness the same way as we could before. Sure we can be happy but our emotions just took a catastrophic hit. I was never depressed or profoundly sad before but now I am. Not all the time, I still find happiness just like sadness one moment at a time. I savor the happy moments and get through the sad moments. Maybe that is what he means by owning it. You are going to experience a whole new level of emotional pain, have a happy plan to get through the moments. Own how you handle this new challenge. I think about something I read that said: I don't pray that bad things won't happen, I pray that when bad things happen I can handle it. Own how you handle this bad situation.

Nowhere

At one time I thought accepting the unacceptable was an oxymoron-simply impossible. Now I’ve learned accepting isn’t saying it’s okay, it isn’t embracing it, it isn’t liking it, or giving it permission, or inviting it in. (It being dementia). It is acknowledging it’s real, happening, inevitable, and incurable. All the “if only” hopes, wishes, dreams, “why us” denials surrounding it are a waste of our precious time-now. Perhaps accepting-owning this God awful disease helps us proceed forward alone through grief. Perhaps the on going grief softens us and stretches our boundaries into more loving, caring, feeling beings who fully realize the beautiful cost of loving and losing. 

BTW - at one time I felt nowhere, but like to believe it leads to now here.

RobertsBrown

If I can assume that your therapist has been with you for awhile, then the guidance you are getting is likely tailored to your position as understood by your professional.  That is not going to mean the same thing to those of us reading this. You are paying for the advice, I suggest you try to understand it in terms of conversations you have had with your therapist.

Therapy done right is very individual and focused.  If you still don't see clearly what they are trying to tell you, ask them directly and stick with it until you do get it.

Rob-

jfkoc

I don't know what "own it" means either and go along with the above....ask for a definition. Then please come back and explain it to us.

Quilting brings calm

I don’t know what the therapist means either. 

Own up - to admit and accept responsibility for something you did that was wrong

Own - as the current slang - to be the rock star - such as my child owned his classroom today 

Own -  as in being a caregiver? - all that comes to mind to me is another slang phrase - embrace the suck.  As in just accepting that it is what it is and you just have to get through it as best you can, while giving yourself a pat on the back for doing so. Possibly hunting for any ‘up’ side to your current situation.  I personally haven’t seen any upside to my situation with my parents. Having them in AL just makes it suck less. 

I certainly hope your therapist isn’t using own as in being a rockstar.  Being a rockstar caregiver would send me over the edge into physical emotional and mental life threatening exhaustion.   I’m doing all I can, cannot do more and am certainly not a rockstar.  You also don’t need to own up either. 

dayn2nite2

Do you feel like this therapist helps you other than this particular issue?

Because this advice speaks to very little or no dementia exposure.  There’s nothing to “own” here.

If you’re being helped by the therapist, okay, but if this is one of multiple things you’re puzzling over, I don’t think this person is a good fit.

tgeno

I don't know what "own it" means either. What I do know is that I have come to accept my DW's dementia. It is what it is. Now what? There is a true story that inspires me every day. The great violinist Itzhak Perlman was giving a concert at the Lincoln Center. After a few bars, one of the four strings on his violin broke. The audience heard it and wondered what he would do. Would he go back and fix the string? Difficult, since Perlman had polio. Instead, after pausing a few minutes, he signaled the conductor to continue, then he finished the concert with a violin with only 3 strings, an unbelievable feat resulting in a huge standing ovation. Perlman then asked for the audience's attention during which he said: "Sometimes it is the artist's task to find out how much music you can still make with what you have left." How much "music" can my DW and I make with what we have left? Perhaps that's what "owning it" means to me.

Mint

Have no answers but have some of those same questions.

Buggsroo

Own your partner’s dementia. Hmmm, I prefer Dylan Thomas’ line about going full bore into the night, not his words; mine. 

I get what the therapist is saying however, you are owning it. Everything you do from running a household, caring for your husband and being married but essentially being on your own, is owning the dementia. I don’t see how you could own it anymore. As others have said here, trust your feelings, trust yourself. 

So do not go gentle into night. Honour your feelings, experiences and strength of character. As for not trusting your husband, you can’t but it is helpful to remember their brain is broken.

dayn2nite2

Buggsroo's post speaks to me and goes into what disturbs be about that advice.

You ARE "owning it."  How much more can you own it?  You do everything, you are everything for him as a result of this disease.  Is the therapist wanting you to LIKE this situation?  Because you sure don't have to (my opinion).  In fact, if you liked this, I'd think there was something wrong with you!

Joydean

I don’t know what he/she means either, but I like a lot of the answers given here!

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storycrafter

Thank you, Everyone. Your replies are full of insight and wisdom and stimulating food for thought. I love and appreciate all your stories and generously sharing your observations/thoughts/pithy phrases, etc. Wish I had the time and energy to answer each note individually, and apologize that I don't.

I may not have expressed myself clearly, but you got the gist. I've been trying to find clarity in my thoughts amidst the grief I've been feeling more acutely lately.

My counselor is very good, probably the best I've had, and has a lot of life experience which gives her much helpful insight. The appointment goes by very quickly and there's not enough time to cover everything that arises. I will explore the word usage more as we go along. The thoughts, ideas, and follow up questions continue developing in my mind after the sessions. I really appreciated being able to look at things with you, more closely, while its fresh. Taking some time to let it percolate has been so helpful.

Victoria, thank you for this..."you placed your love and faith with your husband 44 years ago and trusted you'd be safe in his heart  , I'd say you  still have that BUT  with his illness you can't trust his actions or decisions."

Tgeno, the Perlman story provides an amazing metaphor that's so meaningful.

Nowhere, that's a lovely morph into "...now here."

What everyone has said about "owning" and "accepting" makes so much sense. Your words about Trust give me helpful perspective to carry forward. Thanks for accompanying me on the journey.

jfkoc

It can be overwhelming....impossible to sort things out during periods of grief. It will over ride everything else.