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Topic "The Caregivers", a book, and mercy Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2014.03.03 21:46
I stumbled across this newish book at our library and decided, wisely or not, to read it. It follows a group of caregivers in a support group, some have parents with Alz., one has a husband with PD, etc., it's a mixed group.

What I got out of the book (and it is depressing, just to warn anyone thinking about reading it also), is a better sense of what it is like for the person losing their abilities: it is SCARY. Really scary. To know that you used to know how to do something, where something was, how something worked, or could do things, but can't remember or do them anymore, is very scary, and then you worry what else you won't remember or be able to do tomorrow, the next day, and the next...

Reading some of the detailed accounts really helps you get a perspective of what the patient thinks and feels on a daily basis. It was very enlightening, and tragic at the same time.

I also got the sense that somewhere in the dementia process, the brain actually ends up protecting the person, because the person slips into "their" world, and the person doesn't really understand what all they can't remember or can no longer do, so they aren't scared (as much?) so dont' really worry about or fear what additional loss they may sustain in the future.

This seems merciful to me, in the same way that I understand endorphins rush through a dying person, so they feel no pain and are actually happy. My mom's doctor told me this, and that medicine has no explanation for why this is so, other than mercy.

This makes my caregiver role easier to shoulder somehow, although I don't really know why.

By daisy On 2014.03.04 07:50
I would like to read that book. I can identify exactly with what you are saying. It breaks my heart so much to see the little things that DH cannot manage, simple things like where the dipstick is on the car and how to change the tv channel. Sometimes I fill up with tears just seeing him try to do something that was second nature to him, in the past. Occasionally, he says that he is worried he is losing his mind but after a period he seems to forget about all the things he can no longer do and he seems to think that he is fine again. I thought that it might be his memory failing, but it's interesting to think that the brain allows the person to slip into a parallel reality.

By makrivah On 2014.03.04 10:18
"Parallel reality"... I hadn't thought of that before. An interesting way to cope with lost abilities. A complex coping mechanism that makes a "new normal" seem like it's always been that way. Even explains why my PWP tells the doctor there's been no changes since the last visit. I can readily grasp this idea. Thank you for sharing, it helps.

Who is the author of the book?

By VioletV On 2014.03.04 20:17
I've put "The Caregivers" on my Amazon wish list. Not ready to read it yet, but that way I'll see it there in the future.
Thanks for mentioning it. I hadn't heard of it.


By JulieB On 2014.03.04 21:52
I'm glad to know about this book and will read it too -- but not just yet. I understand what Violet means. This post made me think twice (again) about what my husband is going through. I'm often thinking of how hard this is for me, yet I know he has lost so much. He bears it with such humility and grace. I ask for God's help to keep Michael's perspective ever in my mind. Thank you for sharing about this. xoxo

By lurkingforacure On 2014.03.04 22:37
Nell Lake is the author. I really wish someone in the support group had young kids, as we do, so I could hear how they cope. It is such a lonely spot to be in and very few can understand the impossible position you are in as caregiver/wife to a PD spouse while at the same time mother to children who are having to deal with their father's PD. There is next to nothing out there about those of us in that position, and we sure could use it!

By LOHENGR1N On 2014.03.04 23:15
Lurking , there is much out there about coping with P.D. and young children. Unfortunitly as young on set continues to increase more is added. Contact the young onset center (arrlette johnson center) for information and tips to help children coping with a parent with P.D

By ResistanceFutil On 2014.03.06 10:00
Thanks Lurking. Mi downloaded the free Sample of the e-book. So far, so good. Thanks for the recommendation.

By ResistanceFutil On 2014.03.18 06:57
Completed the book "Caregivers." While it offers no answers to caregiving, as there are none, it did offer perspective on the road ahead, the concept of ambiguous loss, and insight into both the compassion and warmth as well as the despair and uncertainty that is caregiving for a loved one. Again, thanks for the recommendation.

By JulieB On 2014.04.08 19:12
I finished the book "The Caregivers" last night and thought it was excellent. I didn't find it quite as depressing as I expected, but I think that's because things already seem pretty dark around here on a regular basis. Ha. Just kidding. (Sort of.)

I think Nell Lake's writing was sensitive and beautiful, and I cared about each person in the book. I found some comfort in many of the stories, and would recommend it to any caregiver. Thank you for telling us about it! xo

By carman96 On 2014.04.09 00:27
So many books on caregiving. I don't know if I can take another book that doesn't give me practical advice. I already know how horrible it is for my husband. At this point I just need to know how to handle his anger, agitation and confusion.
I just read a book called "Floating in a sea of forgetfulness" by Gary LeBlanc. It was really about Alzheimer's, but also dementia, which is the hardest for me to deal with. It had pretty good advice for how to handle dementia but actually doing it is a whole other thing.
I guess I'm just wondering how many books we have to read. I know it is a quest for knowledge and answers but after awhile it all starts sounding the same.

By umajane On 2014.04.10 00:31
Carman, I think if we even get one little tidbit from these books or forums it may be quite helpful in a certain situation. I read a few of those books but like to read fiction to get away from it all. It's hard to find time to read and relax with all we have to do.

By Rempt2 On 2014.04.12 19:26
I've started reading this book. I'm not partial to self-helpbooks but this would be a great book for a book discussion. My grandmother named Beatrice Amanda was a true caregiver and took care of parents and relatives until the end of their lives in her home. My dad said it was like a hotel. Anyway as a child at 12 (her 90 at the time) she said she felt "useless". I was amazed she should feel this way as she was so important to my family. She died 6 months later from a fall and hospitalization. The author indicated a love/hate relationship between the "professional" and the "caregiver". I can identify with that trying to get attention to my husband. The health system today wants people like my husband but it's so important for caregivers to realize that your job doesn't stop when you put your PWP in a facility. You have to show the people there the patients are still loved. Visit as often as you can.

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