Tuesday, August 11, 2009 Janis asks

Q: Mom doesn't fit into specific Stage 7 category. What stage do you think?

My mom used to be able to walk in a "Merry walker" and talk (not making much sense), but talking - until March 2009. Then she got pneumonia (aspiration). Now she is in a geri-chair or bed, and can no longer walk. She can't sit up straight without pillows/pads in her chair.

She has been completely incontinent for at least 3 years, has had difficulty swallowing for more than a year - has been on pureed food for 1.5 years and thickened liquids since April 2009. She needs 100% care - has to be fed, bathed, toileted, etc. She barely speaks and seldom opens her eyes. She sleeps most of the time, although the last 3 weeks has been on skopolomine (sp?) patch to clear fluid from lungs, and that is a side effect. Now lungs have cleared and patch is off, but still she sleeps. She also has mild CHF and is on lasix for that. She has hospice care and they tell me that it could be a sudden death (forgets to breath), or this could be a plateau that could last for days, weeks or months.

I don't know how to classify what level of stage 7 she is in. Even though she is barely awake, she still manages to take some food, but not much and is fed.

This is unbearable. I am relieved each morning when I don't get 'the call', but at the same time am disappointed, then feel guilty. She has no quality of life anymore, and it is so hard to watch. Like the social worker said - 'we know what the ending will be, we know she won't get better, we know she has no quality of life anymore, so we just want to get to the end of this awful marathon'. I know my feelings are normal and I shouldn't feel guilty, but still I do.

Anyone been through similar stage and can tell me how long it lasted?

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Answers (3)

Christine Kennard, Health Pro

8/11/09 2:05pm

Hi Janis

Alzheimer's disease is divided into stages as a general guide. There are several different models of the stages of Alzheimer's, some people have all the symptoms of a stage while other people do not. Your Mom certainly sounds as though so is in end stage of the disease (stage 7), something the care staff seem to be saying too. There are no sub divisions to stage 7.

I am so sorry for you and your family. Your mother spends a lot of time asleep which would indicate that she is comfortable and not in any pain. Often people with Alzheimer's die as a result of the physical deterioration that occurs as a side effect to bed care and the gradual shutting down of the systems, respiratory, circulation, kidneys etc.

In my experience as a nurse the information you have recieved is correct. You all know the end is near, but there really is no time frame when that will happen. What you are feeling is what most people feel and there is no reason to feel guily. There is a part of someones death that often brings a certain sort of relief. Talking about it to others will help you and hopefully their openness will help you through this terrible time

All my best wishes to you and your family

Christine

Janis

8/12/09 8:18am

Thank you for the information. I guess I already knew most of it, but just needed to hear it again from someone else. Even though it is scary, I guess I just want to hear a '2 weeks', '2 days' type of answer - but for this disease (unless something else happens) there really isn't a way to judge. At least she is comfortable and does not appear to be in any pain. Thank you again for answering.

Christine Kennard, Health Pro

8/12/09 10:40am

Hi Janis

I know what you mean. To have some sort of time frame makes it somehow easier to bear. I can tell you that in many cases you know the end is near when their breathing changes. It becomes more erratic, sometimes with long pauses between breaths, it is known as Cheyne-Stokes breathing.

The main thing you can do now is to look after yourself and your family and have your Mom made as comfortable as possible.

All my best wishes. Please contact me if I can be of any help

Christine

AFA Social Services, Health Guide

8/11/09 2:58pm

Your situation sounds distressing and sad. Watching your mother go through the stages of the illness is upsetting, of course, and I understand you only want her to be comfortable. It is difficult to assess what stage your mother is in; however, it sounds as if she in one of the later stages of the illness. During the later stages, the damage to the brain is pervasive and it is expected that your mother would be totally dependent on others. The tricky part about stages and phases of Alzheimer’s disease is that everyone progresses differently. It is very hard to predict how long your mother will remain in her current condition.

Your decision to provide your mother with hospice care was important. She can continue to be comfortable and receive care in order to promote her own dignity while receiving the best quality of care. It is important for her to be cared for by qualified professionals who have enough knowledge to recognize and respond to each new need of your mother. Making sure she is not in pain or in distress is essential. It is normal to feel guilty, especially since you have no control over your mother’s condition, and it is difficult to cope with on a daily basis. The most important thing you can do is to continue to communicate with your mother by talking to her or gently touching her as often as you can.

Donna

8/14/09 10:56pm

You described my Mother to a T. She is also with hospice since last week. She just got out of the hosiptal with pneumonia. While in the hospital was diagoised with atrial flutter which also shorten her life span. We where also told weeks to months to live. How sad. We are thankful our Mothers can still smile at us but does'nt no anyone. Our question is the same as yours. How Long???? No one can seem to tell us. We understand that there is only one person who can anwer this question. But doctors can give you a round about time. PLEASE

Janis

8/15/09 10:01am

It's nice to know - although too sad - that others feel the same way. If someone said 'it will be days' I think I could handle it better than - days, weeks, months - could be a plateau, etc. I know that everyone is differrent and I guess it's in God's hands - not ours. It's just SO hard to watch. I'm there almost every day - even if just for a short time. All I can do is hold her hand, stroke her hair, talk to her - telling her that it's ok to go, etc. It's like running a marathon, but you don't know how many miles it will be. Thanks so much for the moral support. FYI - my Mom has been in hospice since October, 2008. Took a big turn for the worse in March (pneumonia as well), but has been declining ever so slowly ever since.

Hang in there. It helps just to know that we're not alone.

Q: Mom doesn't fit into specific Stage 7 category. What stage do you think?

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