Alzheimer's vs. Cancer

What would you do if?

Moderator: Moderators

cnorman18

Alzheimer's vs. Cancer

Post #1

Post by cnorman18 »

As many here know, I make my living as a caregiver for the elderly. I am the alternative to the nursing home; I help my clients live out their last days with dignity, in cleanliness and comfort, in their homes. Since I began this work a few years ago, I have been present at the passing of five of my clients.

My current client is an elderly man with, at this point, moderate Alzheimer's disease. That is a one-way road, and it gets pretty dark toward the end. Patients in the last stages are often constantly terrified - every place is a strange and frightening place and everyone a stranger to be distrusted and feared. It's a very, very hard way to go.

That prognosis is difficult enough for his family to deal with; but he also has terminal cancer. It is "treatable, but not curable." Chemotherapy will extend his life to some degree, but at the expense of some discomfort, which may grow worse with time.

The dilemma should be obvious, but to spell it out: should he undergo treatment, or not?

Life extension, when one has Alzheimer's, is a mixed blessing; if it involves additional pain, it is even harder to contemplate. Would it be kinder to allow him more time with his family before the disease grows more debilitating, and risk possibly extending the suffering of that terrible disease? Or to allow the cancer to take him before he is living among strangers?

I am grateful that this decision is not mine to make, but as often happens, I have become an adjunct member of the family and am there for many of the discussions. It's hard to watch. The consensus thus far is to proceed with treatment as long as he tolerates it well; so far, the side effects have been mild and not painful or difficult for him. If it grows harder, they will stop the treatment and let nature take its course.

We are only at the beginning of this journey; he is beginning to come "unstuck" in time, occasionally unsure if he is at home and who his wife (of almost 50 years) is; but most of the time he's still pretty well connected. The cancer is not yet giving him discomfort. Both will gradually grow worse.

I just wonder how others would answer this question. I don't think that religious questions are particularly important here; the question just seems to me to be, what's the right thing to do? It seems to me that the family is making a good and reasonable choice.

Any thoughts?

freeman
Student
Posts: 23
Joined: Sat May 15, 2010 9:45 am

Post #21

Post by freeman »

I would like to offer a couple of additional thoughts. Jesus said if you love your life you will lose it. Does artificially prolonging your life help you enter the Kingdom of Heaven?
The Bible also teaches us not to be a burden to others. In modern churches, believers are taught not to "shirk their work". But the main idea, I believe, is not to be a burden to others in any form. What do you think your patients feelings are?
In my opinion, he should have already discussed his options with his family and his family should honor them.
My wife is a caregiver also, so I know what you are doing. You wish to offer some comfort, and are trying to decide for yourself what is right. It is good of you to do so. But that is what makes caregiving so stressful. You become emotionally attached to them and they pass away on you. But death is a part of life. Sooner or later we all have to deal with it. There is nothing wrong with spending time with loved ones, but you have to step back and look at the bigger picture. What is best for the patient?

User avatar
scottlittlefield17
Site Supporter
Posts: 493
Joined: Thu Jul 02, 2009 7:55 pm
Location: Maine USA

Post #22

Post by scottlittlefield17 »

I'm jumping in this a little late but Cnorman is it legal where you live to divulge patients private information like that? This isn't accusation its just a question. I don't believe its legal where I live in Maine USA.

cnorman18

Post #23

Post by cnorman18 »

scottlittlefield17 wrote:I'm jumping in this a little late but Cnorman is it legal where you live to divulge patients private information like that? This isn't accusation its just a question. I don't believe its legal where I live in Maine USA.
If I had disclosed the patient's name and location, that would have been actionable and unethical, but legal; that is, I would have broken no laws in doing so. If I were a physician, that might not be the case, but I am no lawyer.

As it stands, I am displaying a public shoe; and if the family of one of my clients wishes to stand up and announce that it fits and then attempt to sue me, they would be laughed out of court. The only people who would recognize my clients are those who already know who they are; I have revealed nothing to anyone.

User avatar
scottlittlefield17
Site Supporter
Posts: 493
Joined: Thu Jul 02, 2009 7:55 pm
Location: Maine USA

Post #24

Post by scottlittlefield17 »

If I had disclosed the patient's name and location, that would have been actionable and unethical, but legal; that is, I would have broken no laws in doing so. If I were a physician, that might not be the case, but I am no lawyer.

As it stands, I am displaying a public shoe; and if the family of one of my clients wishes to stand up and announce that it fits and then attempt to sue me, they would be laughed out of court. The only people who would recognize my clients are those who already know who they are; I have revealed nothing to anyone.
I see, thanks

User avatar
Misty
Apprentice
Posts: 234
Joined: Mon May 10, 2010 11:14 am
Location: N. Wales

Post #25

Post by Misty »

My husband suffered a brain haemorrhage in 2006 due to a burst aneurysm. Heretofore he had a MENSA level intelligence and four degrees, now he has been left with substantial brain damage. On his bad days I wish the surgeons hadn't operated to save his life and had let nature take its course. I am now his carer, a situation neither of us find comfortable. He isn't the man I married nearly 41 years ago, and although I will do my best to care for him to the best of my ability, I won't pretend I enjoy this stage in our married life.

User avatar
Goat
Site Supporter
Posts: 24999
Joined: Fri Jul 21, 2006 6:09 pm
Has thanked: 25 times
Been thanked: 207 times

Post #26

Post by Goat »

Misty wrote:My husband suffered a brain haemorrhage in 2006 due to a burst aneurysm. Heretofore he had a MENSA level intelligence and four degrees, now he has been left with substantial brain damage. On his bad days I wish the surgeons hadn't operated to save his life and had let nature take its course. I am now his carer, a situation neither of us find comfortable. He isn't the man I married nearly 41 years ago, and although I will do my best to care for him to the best of my ability, I won't pretend I enjoy this stage in our married life.
Being a care giver to someone who used to be bright, intelligent and independent is a very tough position to be in. I hope that you can get help for him , so that you can take some time for yourself.
“What do you think science is? There is nothing magical about science. It is simply a systematic way for carefully and thoroughly observing nature and using consistent logic to evaluate results. So which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic?�

Steven Novella

User avatar
Misty
Apprentice
Posts: 234
Joined: Mon May 10, 2010 11:14 am
Location: N. Wales

Post #27

Post by Misty »

goat wrote:
Misty wrote:My husband suffered a brain haemorrhage in 2006 due to a burst aneurysm. Heretofore he had a MENSA level intelligence and four degrees, now he has been left with substantial brain damage. On his bad days I wish the surgeons hadn't operated to save his life and had let nature take its course. I am now his carer, a situation neither of us find comfortable. He isn't the man I married nearly 41 years ago, and although I will do my best to care for him to the best of my ability, I won't pretend I enjoy this stage in our married life.
Being a care giver to someone who used to be bright, intelligent and independent is a very tough position to be in. I hope that you can get help for him , so that you can take some time for yourself.
I usually get away for a few days once a year, one of our daughters keesp an eye on him and our adopted Down's Syndrome son (25). My husband doesn't think he has many problems, and doesn't know what all the fuss is about! He can look after himself and our son for a few hours if I have to go and help out with the grandchildren for instance, which is helpful. But he can't use the cooker and can get himself in a muddle from time to time. He is also epileptic since his illness, although fortunately it is well controlled on his meds.

cnorman18

Alzheimer's vs. Cancer

Post #28

Post by cnorman18 »

Misty wrote:
goat wrote:
Misty wrote:My husband suffered a brain haemorrhage in 2006 due to a burst aneurysm. Heretofore he had a MENSA level intelligence and four degrees, now he has been left with substantial brain damage. On his bad days I wish the surgeons hadn't operated to save his life and had let nature take its course. I am now his carer, a situation neither of us find comfortable. He isn't the man I married nearly 41 years ago, and although I will do my best to care for him to the best of my ability, I won't pretend I enjoy this stage in our married life.
Being a care giver to someone who used to be bright, intelligent and independent is a very tough position to be in. I hope that you can get help for him , so that you can take some time for yourself.
I usually get away for a few days once a year, one of our daughters keesp an eye on him and our adopted Down's Syndrome son (25). My husband doesn't think he has many problems, and doesn't know what all the fuss is about! He can look after himself and our son for a few hours if I have to go and help out with the grandchildren for instance, which is helpful. But he can't use the cooker and can get himself in a muddle from time to time. He is also epileptic since his illness, although fortunately it is well controlled on his meds.
Been out for a few days, sorry about the slow reply.

Here's some advice: First, get into a support group if you aren't already, and GO. You need this badly. Just being in contact with others in similar situations can do wonders for your emotional state, and that's very important. Plus, you often get good advice, tips, and suggestions from others in the group. Consult your physician or the chaplain or counselor at the hospital for the names and numbers of groups.

Second, you might consider getting some help from a professional caregiver, if only intermittently. A few days a year isn't enough. I used to care for a man with moderate dementia just eight hours a week, four hours on Tuesday and Friday afternoons, just to give his wife a break to take some time for herself - go shopping, get her hair done, visit with friends, etc. It wasn't much time or money, but it was critical to her state of mind.

If your children are local, it's reasonable to expect some occasional help from them, and on a regular basis, not "as needed." What's needed is some regular time off, as in at least weekly, preferably two or three times a week for several hours at a time. That's a minimum, really; it won't make the job easy, but without breaks it's impossible.

Third, all those feelings you're having are perfectly normal and there's nothing wrong with them. Don't beat yourself up. Mrs. Billy Graham was once asked, "Have you ever considered divorce in your many years of marriage?" Mrs. Graham was shocked: "Divorce?!? No, never... Murder, yes. But never divorce!"

To be an effective caregiver, it's absolutely essential to take time for yourself. You can't take care of someone else if you're emotionally impaired yourself, and that WILL happen if you don't pay attention to your own needs. Don't put this off; "burnout" can come on suddenly, and you don't want to go there.

You are to be commended and admired for your love, commitment, and dedication to your mate. Not many people seem to understand what "for better or for worse, in sickness and in health" means any more. My hat is off to you.

User avatar
Misty
Apprentice
Posts: 234
Joined: Mon May 10, 2010 11:14 am
Location: N. Wales

Post #29

Post by Misty »

Thanks for the advice. I am fortunate that we have a wonderfully supportive family, so we are much better off than most. Support groups definitely aren't my thing at all, but thanks for the suggestion, I am not a clubable person and feel uncomfortable in a group. As long as I can shut myself in my room with my computer, for periods of time during the day, that suits me just fine. I have my artwork, poetry and writing which keeps me reasonably sane.

As I said my husband is quite capable of being left for a few hours a day and can make himself and our son sandwiches for their lunch if I am out. Maybe I have painted the situation worse than it is. My husband was so intelligent before his illness that even though he has suffered substantial brain damage, his intelligence is still better than that of many other!

We have put our property up for sale as it is large and I feel the need to downsize, my husband isn't exactly thrilled about this as he enjoys his large garden and admittedly manages to keep it up, a task I don't like. Our middle daughter lives about 150 miles away in England and would like us to move nearer to her and her family, so she can help out more, but I am not really keen to move from Wales. But as nothing is moving in the housing market at present, any decision can be put on hold for a while. Anyway there is plenty to think about.

"Have you ever considered divorce in your many years of marriage?" Mrs. Graham was shocked: "Divorce?!? No, never... Murder, yes. But never divorce!"

Oh I am with Mrs Graham on that one, but that was even before my husband became disabled. :lol:

BwhoUR
Sage
Posts: 555
Joined: Sat Jan 23, 2010 5:20 pm
Location: California, USA

Post #30

Post by BwhoUR »

Misty wrote:Thanks for the advice. I am fortunate that we have a wonderfully supportive family, so we are much better off than most. Support groups definitely aren't my thing at all, but thanks for the suggestion, I am not a clubable person and feel uncomfortable in a group. As long as I can shut myself in my room with my computer, for periods of time during the day, that suits me just fine. I have my artwork, poetry and writing which keeps me reasonably sane.

As I said my husband is quite capable of being left for a few hours a day and can make himself and our son sandwiches for their lunch if I am out. Maybe I have painted the situation worse than it is. My husband was so intelligent before his illness that even though he has suffered substantial brain damage, his intelligence is still better than that of many other!

We have put our property up for sale as it is large and I feel the need to downsize, my husband isn't exactly thrilled about this as he enjoys his large garden and admittedly manages to keep it up, a task I don't like. Our middle daughter lives about 150 miles away in England and would like us to move nearer to her and her family, so she can help out more, but I am not really keen to move from Wales. But as nothing is moving in the housing market at present, any decision can be put on hold for a while. Anyway there is plenty to think about.

"Have you ever considered divorce in your many years of marriage?" Mrs. Graham was shocked: "Divorce?!? No, never... Murder, yes. But never divorce!"

Oh I am with Mrs Graham on that one, but that was even before my husband became disabled. :lol:
Isn't it funny how a few nice words from complete strangers can make you feel better? A few months ago I thought I was a "suckka" for registering for this forum, it wasn't my thing at all, now, they can't get me to shut up. :P Cnorman is very wise and right, take care of yourself, your husband is lucky to have you.

Post Reply