Re: Hospice nurse - patient with SND

[Guest guest]

Dear Laurelle:

You sound like a very caring and concerned Hospice nurse. my husband is also under Hospice care, and I know how helpful Hospice can be. Ken also has intermittent UTIs and has taken antibiotics for them for many years including taking prevention doses daily. Now, he tends to get yeast infections from antibiotics because he is so far progressed. Recently, he had anther UTI with a temperature of 101 which is very high for him since his normal temperature is 96. We decided against giving him any more antibiotics because they would only possibly prolong the process of dying, and Hospice is here not to prolong life but to make the passing easier. It was a very hard choice for me, but Ken seemed not to be in any pain and to be comfortable, so we decided to "let" him go. Guess what. His fever went down, and he is now back to his regular not very happy but alive self. It was not yet his time. However, I do not regret our choice. We called in hospice because his quality of life is no longer worth holding on to, and he is ready to go. He is a wonderful, patient, non-complaining man, and he shouldn't have to keep on like this with no possibility for recovery. I do not know how your patient or his wife feel about this, but perhaps the reason the doctor would not prescribe antibiotics is similar to ours. We all tend to want to keep them alive as long as possible, but the time does come when that is not the kindest thing to do. Ken recovered from last week's TI during which he showed no signs of discomfort. I only pray that the next time he fades that he will also be comfortable with Hospice' help. You do a blessed job, and I couldn't be more grateful for Hospice help. Also, I don't know if it was you or someone else who was on Hospice and was worried about Percocet's being addictive. That really is not a consideration at this point if the drug would make what life there is more comfortable.

Barbara

[Guest guest]

Dear Laurelle:

You sound like a very caring and concerned Hospice nurse. my husband is also under Hospice care, and I know how helpful Hospice can be. Ken also has intermittent UTIs and has taken antibiotics for them for many years including taking prevention doses daily. Now, he tends to get yeast infections from antibiotics because he is so far progressed. Recently, he had anther UTI with a temperature of 101 which is very high for him since his normal temperature is 96. We decided against giving him any more antibiotics because they would only possibly prolong the process of dying, and Hospice is here not to prolong life but to make the passing easier. It was a very hard choice for me, but Ken seemed not to be in any pain and to be comfortable, so we decided to "let" him go. Guess what. His fever went down, and he is now back to his regular not very happy but alive self. It was not yet his time. However, I do not regret our choice. We called in hospice because his quality of life is no longer worth holding on to, and he is ready to go. He is a wonderful, patient, non-complaining man, and he shouldn't have to keep on like this with no possibility for recovery. I do not know how your patient or his wife feel about this, but perhaps the reason the doctor would not prescribe antibiotics is similar to ours. We all tend to want to keep them alive as long as possible, but the time does come when that is not the kindest thing to do. Ken recovered from last week's TI during which he showed no signs of discomfort. I only pray that the next time he fades that he will also be comfortable with Hospice' help. You do a blessed job, and I couldn't be more grateful for Hospice help. Also, I don't know if it was you or someone else who was on Hospice and was worried about Percocet's being addictive. That really is not a consideration at this point if the drug would make what life there is more comfortable.

Barbara

[Guest guest]

Dear e:

As I understand it, as a Hospice nurse, you constantly treat your patients to make the quality of the life they have left better. You just don't have to put them through aggressive treatments that do little more than extend their suffering. the Hospice nurse would have ordered antibiotics for Ken if I had asked her to. It was just that his quality of life is so limited now, and he was having no pain at the time. He said he was ready to go, so, we decided to let nature take its course which it did, and he is still with us. I am not too sure that he is glad to be here, but I am glad to still have a little piece of him. When we first talked to Hospice, my daughter asked me if I thought I had the resolve to follow through with this, and I answered that I had to have because I owe it to him. He has been my protector and lover for almost fifty years of marriage and five years of courtship before that. I want to hold on to even the small part that is still left, but I know it is no longer fair to him, and with Hospice' help, I am going to let him go. You are fairly new to this list so you may not know that Ken was in a Nursing Home four and a half years ago, and they had him in maintenance only. I hired full-time helpers and took him home. Since then, we have traveled in our trailer numerous times with the aides, and up until four months ago, the aide took him to the gym and exercised him regularly. He has had Parkinson's for 21 years and Shy-Drager Syndrome for 8 years. He worked as a Judge until nine years ago. Over the years, he has slowly lost the ability to walk, to talk clearly, and to see well enough to read. At one time, he owned both a sailboat and an airplane and used them both often. He scuba dived and had a collection of cameras and guns. He loved to camp and fish. He could read several books in a day, and he was often asked to be an after dinner speaker because of his humor and his knowlege.Now he can enjoy none of that. He has been incontinent for five years and wears a foley catheter now because of the yeast infections. Old friends cry when they come to see him, and very few can stand spending much time with him.He still enjoys eating and can still swallow liquids most of the time. When he can no longer do that, there will be absolutely no quality to his life left. Last night, he was eating but not much. The aide was trying to get him to eat a bit more, and I suggested that he had to leave room for ice cream. The aide laughed and said he'd never seen a time when Ken did not have room for ice cream. So, I guess there is a little life left in him still. Even when he was running a high temperature and was not responding to us at all, he was able to suck on a popsicle.

As to the yeast infections. They show up in his urinalyses and he may develop a rash in the penal area which is very irritating to him. He takes an internal medication that Hospice provides and uses an external Fungus cream which Hospice also provides.

If anyone were to ask me what the single best thing I ever did for Ken was, I would say it was to let someone else take on the physical care of him while I could spend good quality time with him. He has always been a proud man, and having his wife do so much for him physically was not easy for him to take. He tended to resent me, but now we can let that part be between him and his caregivers. Needless to say, we are fortunate that we saved enough pennies to have this care. Actually, he is the one who saved it, so he is the one I should spend it on. I have arranged for long-term care insurance for myself

This is a longer letter than I intended to write. One of the great things about this LISTSERV is that it helps me clarify my own thoughts.

Love, Barbara

[Guest guest]

barbara smith, the letter you wrote to laurne was very touching, my husband who has balance problems, has not gotten an official dx yet. It``s been 2 years of specialists. His movement disorder specialist in Phila, will only say cerebellum atropy,as of now. My husband is 56 and it`s scary as hell to think about what the future holds. We still have a son in high school.

Anyway, I think what you said about leaving the caretaking to others later on makes so much sense. My husband also saved his pennies and I know he`d appreciate me not doing all the caretaking. Thanks for the advice, thankgoodness he isn`t anywhere near needing any help yet.

Gert

[Guest guest]

barbara smith, the letter you wrote to laurne was very touching, my husband who has balance problems, has not gotten an official dx yet. It``s been 2 years of specialists. His movement disorder specialist in Phila, will only say cerebellum atropy,as of now. My husband is 56 and it`s scary as hell to think about what the future holds. We still have a son in high school.

Anyway, I think what you said about leaving the caretaking to others later on makes so much sense. My husband also saved his pennies and I know he`d appreciate me not doing all the caretaking. Thanks for the advice, thankgoodness he isn`t anywhere near needing any help yet.

Gert

[Guest guest]

Debbie:

You are right. If it weren't for this dastardly disease, we would have a very good life. And up until recently, Ken was able with much help to enjoy a lot of it. But now, he can just sit and wait for the inevitable. He has a very strong constitution except for this, so the downward process is very very slow.

Thank-you for caring.

Barbara

[Guest guest]

Barbara,

I had to wipe tears from my eyes as I read your wonderful account of your

husband's illness. So many things in life are so unfair, but I see that you

take pleasure in the smallest things life is now affording you and your

special husband.

My what a great life he chose to live, undoubtedly providing joy to others as

well as himself. I would love to be able to meet you both. Your words show

me that you have chosen an attitude of being " better " rather than " bitter " .

I am sorry that his friends are unable to look beyond the " suffering body " to

see his spirit.

I absolutely love being a Hospice nurse and as I stated earlier am not sure

what I feel about prescribing antibiotics. I think that in some situations,

a prescription of antibiotics would not prolong life (as in your husband's

situation, but ease some of the discomfort, and that to me, is the ultimate

responsibility of the Hospice Nurse.

Thank you so much for your response and know that you and he will be in my

thoughts and prayers. Please consider keeping in touch.

Laurelle

[Guest guest]

Barbara,

I had to wipe tears from my eyes as I read your wonderful account of your

husband's illness. So many things in life are so unfair, but I see that you

take pleasure in the smallest things life is now affording you and your

special husband.

My what a great life he chose to live, undoubtedly providing joy to others as

well as himself. I would love to be able to meet you both. Your words show

me that you have chosen an attitude of being " better " rather than " bitter " .

I am sorry that his friends are unable to look beyond the " suffering body " to

see his spirit.

I absolutely love being a Hospice nurse and as I stated earlier am not sure

what I feel about prescribing antibiotics. I think that in some situations,

a prescription of antibiotics would not prolong life (as in your husband's

situation, but ease some of the discomfort, and that to me, is the ultimate

responsibility of the Hospice Nurse.

Thank you so much for your response and know that you and he will be in my

thoughts and prayers. Please consider keeping in touch.

Laurelle

[Guest guest]

Barbara, I am glad the list gives you the opportunity to put your thoughts together because at the same time it lets us hear them. I know this sounds crazy, but except for this horrible disease, you and Ken have a perfect life. If anyone doubts this, they have only to read your posts. Debbie

[Guest guest]

Barbara, I am glad the list gives you the opportunity to put your thoughts together because at the same time it lets us hear them. I know this sounds crazy, but except for this horrible disease, you and Ken have a perfect life. If anyone doubts this, they have only to read your posts. Debbie