..after the moment of laughter

[citybythesea]

Last I had posted on how mom had told the therapist to stop and all the responses helped me so much. I thought I would post on mom. Sometimes I wonder about this "last stage" or "stage 7". Most days mom stares into oblivion. She doesn't acknowledge me unless we are having a good day. The therapist did tell me on Thursday that mom is more alert when I am around than when I have to leave a sitter in charge. I had also heard this from her nurse and from the young women who comes in to help bathe mom. So I guess I know that she still has me as important in her mind.

Since her last word of stop I have had some very unusual days. Most of the time she had been sleeping then we went for a few days where she stayed awake what seemed like forever. I would wake to her being awake and go to sleep past midnite with her still being awake. When it comes to her eating I am usually lucky to get 1000 calories into her...and that is with alot of work and cajoling, usually up to 6 small meals a day. Tho I have had the luck of getting more into her lately as I have discovered that if I cut up a honeybun or other pastry quite small she will finish it rite off. Today we are having a sleeper of a day. It is almost noon and she has not stayed awake long enough to even get her meds into her. I have a rule that she has to be awake at least 15 minutes before I start to feed her as she has fallen asleep on me while I was feeding her and it was quite distressful trying to get her to wake to finish chewing the food. I was so scared she would choke on it.

I expected today to be this way as yesterday was one of those fresh air days. I awoke to her being very coherent. With my morning I love you's I always ask for a hi. She said "Hi". I awoke to a very good day anything thaqt was bad after that would roll off like water. She ate her breakfast with a robust attitude and her eyes were very much in the day. We watched a cooking show as she ate and they were frying icecream and with that I asked her if she would like some ...she said "yes". As I chattered and she listened and took in every bite of ice cream like a new delicasy to child I asked her if she could say my name. Normally I would say my name then ask to repeat it, this time she just slowly said my name "Nancy" without any help. I messed up the good moment there for awhile when I asked her if she remembered who the man in the picture on the wall was. She literally froze. I believe she knew he was the love of her life, but just did not know how to express it to herself in her own mind. She stared at the ceiling for awhile then took a nap for awhile then awoke again.

As I write this I too am having an
AD moment as I know she said "no" yesterday but I cannot to save my life remember why.

Yesterday's little bit of activity seems to have worn her out. Sitting here typing and watching her I know that I will have to be on the ball as she is sleeping very soundly and any 30 minute moments away will mean missing that window to make sure she has her nutrition.

With this weeks little ups and downs I have encountered a downer for myself. The woman I had entrusted to sit with my mother while I was gone for long periods of time I have had to let go. She had taken to bringing her newborn grandbaby to work with her. I did not mind when I allowed it one time when I was here but it became a habit and with that habit she had started to be late to work also. Then coupled with my other half seeing her in the store using a elictric cart to do her shopping, I just couldn't trust that if something where to happen she would be able to do her job correctly. I have been melancholy over that as I have trips that need to be made that will have to be put off.

When mom was able to at least feed herself Jack would bring her food to her and stay around the house for the other emergencies I feared. Last trip she called the nite before and said she wouldn't be able to work if she couldn't bring the baby because her daughter was starting her job that day. I almost fell over with disbelief. Her daughter lives with her and knew her schedule over 2 weeks in advance. To boot I pay a very nice sitting fee of $10 an hour which can add up to a nice paycheck. Her daughter was going to work for $5.55 an hour. That was the final straw in a little over a week. While she knew extremely well how to take care of mom she just left a very bitter taste in my mouth over those 7 days. This was after having worked for me for 3 months. (In a regular job she would have just got off her probationary period!) Anyways so back to the world to find another sitter I can trust, which I don't know will happen after this.

I am so sorry for being so long winded..some of this I needed off my chest others I thought I would share as I hope it will help others of you to keep holding on and looking for those little "breathes of fresh air". HUGS and KISSES to all.

 

[christine_batch]

Dear citybythesea,
When we think that everything is runing o.k. a cog messes up the work.
Trying to find the right Carer is a bloomin hard job.
If I did not like them, I put my feelings to one side, if Peter was happy and if he ever mentioned he did not like a Carer, I never had them back again.
I cannot understand someones mentality taking a baby with her in the first place.
Sincerely hope that it will not be too long before you find another Carer for your Mother.
Very best wishes
Christine

 

[citybythesea]

I agree so totally, I wish mom could talk enuff to give me insight as to her carer. It did totally floor me and as I had given her permission for the baby to come one time I was taken by how she took advantage of it. Tho I will admit I was sort of hopin that a baby could bring mom out a little.

I think what really alerted me also was the fact that on the day I wasn't there and the baby was there she managed to get mo to eat over 3000 calories. Most of these calories were in the form of "junk"...pastries, and so little actual food. She also said she got mom to drink a nutritional shake and a v-8......something I have NEVER been able to get her to do or have been able to get happen since. My conclusion was that the baby got way more attention and the caregivers snacks went into moms bucket. (I keep a small pail in her room where all labels and wrappers for the day go, so I can keep track of what she is eatin....and when she is not.) I also thought it very unusual for her to have gotten mom to eat that much when both a therapist and the young girl that helps with the baths' both told me that mom was very out of sorts and sleepin very hard when they each came in (4 hours apart) and that it was hard to wake her.

I guess this is why I keep a diary of everything...from what she eats to says..to how much I empty her catheter bladder and ask lots of questions of the extra people that come in regularly and as to how she was when they got there.

Her dr. says I am being overly "anal" about it but likes the fact that it is done because she now has no problems looking over my diary and tweeking little things from the diet to her meds.

 

[Brucie]

Sometimes I wonder about this "last stage" or "stage 7".

I think it is always worth remembering that there are no absolute stages with dementia.

The 3 stages, or 5 or the 7 stages, or the other attempts to provide clarity on how far along the trail a person is - all are just attempts to categorise, based on samples of people who have dementia.

Since the experience of dementia differs between people who have it, we can only really use the idea of discrete stages as a rule of thumb to try and figure where we and they stand.

The poster produced by Professor Chang is something I have found useful http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=9960

This relates 5 stages [pre-diagnosis, mild dementia, moderate dementia, severe dementia, end-stage dementia] to another rule of thumb measure, the MMSE.

But none of all this seems to me to be an exact science, and we all need to use whatever we can get, but mostly to observe the development of the dementia in our loved ones, and act accordingly and appropriately, if we are able.

 

[citybythesea]

Brucie

Thank you for the links. Right now I am not able to access them, but will try again later. I am very interested in seeing what they have written....tho' I think that perhaps her work is what moms Dr. has been using to go by.

Yes, AD is very .....well let's just say I beleive that even a later stage patient can go back to a much earlier stage.

Moms problems have been multiplied by strokes and neurologists here pretty much write off AD patients in later stages because there does not seem to be much hope. I have dicovered that possibly she herself can help to give herself a better quality of life with some work of our own. Mom has been on a pretty much babyfood diet for quite a while now that is high in DHA which is good for brain and eye developement. Of late she has started back with mono words...tho' out of the blue today I got "I don't know". She seems to have a more cheery demeaner. I relayed this to her DR. via email, as she is very interested in what goes on with mom, tho we both know that the long term end will not be here on earth.

Her Dr. is interested in the diet aspect as she feels that maybe there is something there that will help future generations. Me I just pray this isn't genetic to me..