Wife, or Caregiver?

img_4216-1“Every Little Thing’s Gonna Be Owlright” is a canvas bag I painted. Such a cutie!!

Dementia is progressive.  It does not get better.  There is no cure. And we who care for someone with dementia are at risk ourselves due to the ongoing stress of it all.

That brings me to a question I saw posed online, I think it was a writing prompt.

Wife, or Caregiver?

I think the question could be expanded to…

Husband, or Caregiver,

Daughter, Son, Granddaughter… or caregiver... and on and on.

I will speak to the spouse/caregiver because it is what I know and live.

An answer to the question is found where the lines got blurred between my husband as spouse and me as fully caregiver.

I am so glad to be able to share this information because I believe it is so helpful for the mental health of the caregiver.  And, for those of you who read my blog, you know I am an artist so forgive me, a non scientist, as I get “all scientific” with my seven stages…

First I ought to say… My considering myself to be a caregiver and no longer a wife happened incrementally over the course of several years.  Here are the stages we have been and are still going through:

The seven stages of my becoming a caregiver.

Stage Zero:  (All spouses take care of each other throughout their marriage – sometimes one spouse needs more care… and it can’t ever be seen as equal as the spousal role is to love the other – so this stage is a reminder of that…)

Stage One.  Unnoticible to those outside the husband/wife relationship:  husband has small changes in his personality, husband apologizes, difficult time is covered over by husband/wife relationship. (+/- 1 years)

Stage Two.  Wife confronts husband on his now more apparent personal changes, gets angry pushback.  The relationship suffers. (+/- 1 years)

Stage Three.  Husband is unable to concentrate on work and otherwise is acting in outlandish and inappropriate ways in his business, but, thankfully, wife is able to talk him into retiring.   Still, he is able to hold a conversation, be excited about politics, and he still reads.  He still drives.  The family still plays games together and he can fully participate.  Wife is able to talk her husband into retiring and moving out of state. (+/- 1 years)

Stage Four.  Husband is acting in inappropriate ways socially and wife talks him into letting her come along to his next doctor’s appointment where he is diagnosed with mild cognitive impairment.  Husband no longer reads yet spends all of his waking hours watching cable news.  (+/- 1 years)

Stage Five.  Husband gets confused with bill paying and has trouble concentrating, begins to have problems working his television.  Wife takes over all finances. (+/- 1 year)

Stage Six.  Wife has husband evaluated for driving the automobile.  He loses his license. Husband begins believing he is running a business and also begins thinking “he needs to go home” and will pack his bags.  Wife sees that the business ideas are being stoked by his constant web surfing so wife takes away all electronic devices.  Wife is able to verbally talk him out of leaving.  Husband is unable to stay home alone.  (+/- 6  months)

Stage Seven.  Wife has now crossed over into full caregiver because husband has become incapable of understanding most things.  Wife is able to manage his television viewing habits so as to have him watch for the most part, good movies and reruns of shows like I Love Lucy.  Husband is now completely unable to play a family game.  Husband has times of psychotic type behavior where he, in agitation, tries to escape.  Will walk down the street and not want to come back.  Wife has needed to call the police to come help with this problem.  Husband does not wash himself even if he is in the shower and will put on the same dirty clothes afterward.  Husband sleeps in his clothing.  Husband cannot at times find the bathroom though there is a label on the door.  Cannot find where his bedroom is.  Husband will want to eat though he just ate a full meal.  (3 years… and counting).

So, for me it was not wife OR caregiver.  It is wife has BECOME caregiver.

It is not just a war of words, though. Tomorrow I plan to discuss how defining myself as caregiver has helped me.

Is every little thing gonna be owlright? What do you think?

11 thoughts on “Wife, or Caregiver?

  1. Thanks, understand fully what you are writing, I have got to stage six, driving, that is a hard one. He is a careful driver most times, but will get lost if I’m not telling him which road to take, let him concentrate on driving, don’t talk unless you think he is starting to go to sleep, which is very easy for him, I have tried telling him that I need to drive now, “Which I do have a drivers lic”. In January when he turns 82, he has to get a Doctor’s Certificate to pass, hopefully his health will be sorted out before that. It’s so hard he is starting to think I’m going against him when I say anything about driving, so we stay at home, that’s the easiest way around it at the moment. Thanks for your post, it is very helpful.

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    • I took him to our local rehabilitation center where they administer a driving test for those who are actually able to rehabilitate. As soon as they had him begin the test it was obvious that he couldn’t do it. They actually told him face to face that he can’t be on the roads any longer. I was so glad at how that happened. It’s a “road” the caregiver role!!!

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  2. I can only imagine what it must feel like to go through those 7 steps. I worked as a helper for disabled persons for 20 years, but it is not quite the same. You get an experience with what it’s like to live with someone who is ill and can never be the same – in a number of ways (dementia, ALS, all sorts of physical and/or mental conditions that may or may not be progressive). But it is not a lived experience.

    That being said, I have had my share of illness and death in my own family and in my own life. And I have found that my ability to accept something really heavy and dark, especially if it appears chronic is easier when you realize that in order to get some of good life anyway, you have to muster what resources you can to balance that experience. On a very basic level you have to figure out how to focus on what is good in life, separate from the illness, or what the silver lining is about the illness – or both, preferably. Not to deny the reality of the days when you just want to quit, but to give you energy to move through those days.

    That’s the short answer I have found to those ‘owl-questions’ that come up again and again as we grow older and which (I hope) does not sound like a platitude. I feel there is a longer answer, though, but it is more personal for each of us and requires a long time of both lived experience and reflection. It is about what meaning it has given our lives that things turned out the way it did, despite the heaviness of it all on many days. But that is, as said, a very personal answer and sometimes not even possible to put quite into words.

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    • I heard someone say recently that life is suffering. And maybe that’s true. And since I used to work where I did lots of paperwork and filing, I think this analogy holds for me: being able to write about the experience, putting it into words drags darkness into the light for inspection so it can be filed properly to give our lives that meaning, as you say so eloquently in your comment. Thank you.

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      • I don’t believe life was made to be about suffering, if one can put it that way. But it certainly contains suffering – always and again. But then there is the mission to create something to balance that suffering, and – sometimes – overcome it, as we have discussed. By the way, I love the phrase “drag darkness into the light”. I’ll definitely file that! Stay well.

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  3. Great post. I’m so sorry you have to go through this experience. My Father-in-law had Alzheimer’s early in my marriage. My husband has just reached the age his father was when we first noticed changes. I don’t dwell on it but it is in the back of my mind.

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  4. I couldn’t sleep tonight because I’m angry with my mildly cognitively impaired partner. We have been together for 10 years. Looking back, we had two good years together before the impairment manifested. I knew that someone out there would be in my boat, and could help me learn how to row it better.
    We’re at stage 4.5 now, money is problematic for him and he is too proud to ask for help. I believe that I am nearing the end of being his beloved, and now need to become his caregiver. I can’t hold on to the illusion of having a full partner anymore. Reality is less painful than wishful thinking; lower expectations equal fewer disappointments. The loss has already occurred. Now I can lovingly care for this being, and build a strong support system for my health and sanity instead of trying to work on a romantic relationship. Thanks for sharing your insights on the stages. All the best to you.

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    • I stopped getting angry at him when I took the head of the house position and saw him as one under my care almost like his mother. What I always kept thinking is that if not me then he’d be out on the street. It really helps to talk about it. Make sure to seek out any and every help and support possible because you won’t be able to do it on your own. Best to you. Thanks for reaching out to me.

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