CaringCV

Gail Sheehy, author of the influential book Passages, has now written Passages in Caregiving, after helping her husband fight cancer through four bouts of treatment over 17 years. not ALZ

She conceptualizes the caregiving journey into eight “turnings:”
1. Shock and Mobilization

2. The New Normal

3. Boomerang (the next crisis)

4. Playing God

5. I Can’t Do This Anymore (and oh yes, we know that stage!)

6. Coming Back (you begin to continue on the path of life)

7. The In Between Stage (too soon for hospice, too well for acute care)

8. The Long Goodbye

Although written for caregivers of all kinds, there are some passages which speak tot he unique perils of dementia caregiving, and especially the issue of “disenfranchised” grief – grieving while living with a loved one who is no longer the same person.

It is also American so a lot of the book is involved with sources of help and support for US caregivers, but the basic structure Sheehy outlines of the caregivers’ “passages” is a recognizable one, and thus gives some support and comfort.

He asks, What is wrong with me? Why am I so tired? Should we go see the doctor?

This, after coming into the office this morning, beaming, saying, “Well! you know, I don’t think there’s anything wrong with me. I could go on like this for years!” and, (testing,) “Maybe I could even get my driver’s license back?”

Within a couple of hours, he is falling asleep over lunch and asking why?

I explain, again, that it is just the Alzheimer’s (dementia) and that I already asked the doctor about how much he sleeps. I say, “She said, Don’t worry about it.”

I don’t tell him that the doc just grinned and said, “You’re lucky. It could be the other way.”

I feel a bit daft. Here I have been muttering around about the need for more training for dementia care and I just found this site which offers all kinds of resources and specializes in training aides at Long term care institutions. There is a whack of stuff there that we can use as home caregivers or to help train our people who are helping us, whether paid or family-and-friends. They have an extensive library http://www.crisisprevention.com/Resources/Article-Library/Dementia-Care-Specialists-Articles and also a lovely little e-book on communication tips, which I think is a good first step.

On top of this new discovery, I have also found out that the BC government has a registry site for care workers, the British Columbia Care Aide and Community Health Worker Registry, (http://www.cachwr.bc.ca/Home.aspx)

which requires employers to report abuses, and to hire only registered health care workers. Who knew!

Wanted Caregiver/Companion: for 80-year-old man living at home with mixed dementia. Likes music and outings but not crowds (or jazz!) Usually gentle, polite, appreciative, nostalgic and repetitive. Requirements: experience with Alzheimer’s or other dementias, including completion of some workshops from the Alz Society or equivalent; experience as personal care aide; driver’s license; references; background check; sense of humour, imagination, and patience. Part-time, including weekends and mornings, light cooking, light housekeeping, flexible hours. Phone 250-339-6117 or email delores@watershedsentinel.ca

We had a meltdown last week, complete with the usual “You took my driver’s license” and threats to drive anyway etc. It quickly dissolved after a while in mutters of “Well, I don’t know what to do, I love you [anyway!]”

Since, I have been wondering if it makes sense to try to analyse the “cause and effect,” or if these meltdowns are just going to brew out of nowhere and catch one unaware anyway no matter how careful one is with the environment.

In this case, I think the factors were:

1) I actually took a day off to go to a very interesting meeting with a friend, and came home refreshed and happy about the possibility of returning to some of my old activities. My spouse had enjoyed the day with his caregiver, but was muttering about the “zoo” at the pool where they had gone to pick up her child. (He just cannot handle any kind of noisy complicated scene at all.)

2) The next morning we had gone for a drive and done several errands, even though he was so “tired” he just waited in the car, and he had come home exhausted.

3) I had walked in the house, and instead of tending to his needs, had immediately gone into some excited catching up with a work colleague, ignoring him as his repetitious questions got more and more urgent. 

Result? Meltdown. Preventable? Maybe, It could be that his sensitivity to upset and commotion is getting higher and higher as the disease worsens.

So a few days ago….well, I blew – there is no other way to say it.

All the careful, intelligent, humorous caregiving just thrown out the window – kapow! We had had a couple of rather rocky days — including Don being edgy and not settling down, and an enticing invitation to return to some of my professional life as a toxics activist, and other personal stresses. Then my poor love asked the same question for about the 15oth time and….that was it.

I ran into the kitchen and threw a glass in the sink. I am still savouring how wonderful it felt — the sharp crack of the glass breaking. Marvellous. I don’t think I will take up throwing crockery, but I can see how very satisfying it is!

But with that crack came something inside me breaking too and I just stared to cry for hours and hours…. Frightening my love to no end – the next day when I was over it except for some swollen eyes, he came into the room and started to cry, saying he thought our relationship was over and I was going to throw him out. Not good at all. Poor guy. I think he is starting to get over it now, but that is real lesson to me. He has no way at all of interpreting my reactions, just like a little child.

Also I have had to do some serious work forgiving myself….made easier, perversely, by the fact that my love has not forgiven me at all, and goes around calling me Crazy Woman. Oh well, if it fits, wear it, hey!

Love and Forgetting: A husband and Wife’s Journey Through Dementia by Julie Macfie Sobol and Ken Sobol. (Toronto, Second Story Press, 2013.) Also available as an e-book.

The Sobols were not just a long-standing marriage, but a writing partnership as well, so when the disaster of dementia struck Ken, they bravely set out to write about it. Ken’s voice falls silent quite early in the story, and Julie has finished the book on her own. 

Ken was eventually diagnosed with Lewy Body Disease, the form of dementia second most common after Alzheimer’s. Many of the symptoms the Sobols describe, however, will ring true to observers of other dementias, although the Lewy Body symptoms are stronger. The horror of it is the paranoia and fear that Ken winds up living in. I think though that it is very easy for someone with Alz or vascular dementia to also be in terror much of the time, because they just cannot understand the world around them. 

There are so many poignant scenes in this account, and the Sobols have captured better than most the chaos and bewilderment of this on-going train wreck. Julie writes: “Chronic disease is an uninvited guest that moves into your house and then proceeds to act as if it’s the hose and you’re the guest. “I’ll set the rules,” the intruder tells you, standing in front of the door with arms folded tightly. “And please to remember there is no room for reasonable now, There is only ‘this is the way it is.”’ At another point she refers to it as “this shape-shifting tsunami of a disease.”

In the end, as Julie struggles with the home and community care system in Ontario (not that much different anywhere — over burdened and under-resourced, and not even really understanding what is going on out here in the homes of Canada), Julie writes about the core problem:

“If there was blame to be placed fro situations like this…it’s on our society as a whole. Science has artificially extended the human life span but society hasn’t yet faced head-on the consequences of that change. We don’t place enough value on caregiving in all its forms, professional and informal, and we refuse to question our Western obsession with extending life at any cost.”

She also touches on the mysterious benefits of this caregiving experience — “…the simple act of forcing yourself to slow down, working to find the emotional rhythm of the other person, can be beneficial….inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of the instinct.”

 In the Afterward, Julie adds some words of advice for health care professionals and I think they are sound, including getting family doctors to be more active in the inevitable education process that must happen, and giving more dementia seminars in medical and nursing schools and social work programs.