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Looking for Insight, end stage


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Old 09-30-2013, 04:34 PM   #1
totallydunn
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Looking for Insight, end stage

Hello Everyone

Typical newbie mistake, I posted this in the wrong forum (General Health), so my apologies if this appears twice.

I've been reading this forum for a while, but this is my first post. You all seem such very caring people, with a wealth of information and insight. I could really use some of it right now.

My darling Mum was diagnosed with Alz about 7 years ago. I am sure that she was in the early stages for at least a couple of years before the actual diagnosis. Now my Mum is at the end stage and has been in palliative care (hospice care) in her NH since the end of May. To give you all a brief timeline of her decline and care, when Dad died nearly 6 years ago she was still living in her own home. It became apparent very quickly that she couldn't live on her own and we moved her to a senior's residence with meals served in the dining room (she couldn't be trusted to have a stove in her little apartment). She had a dear friend that lived at the same residence that was instrumental in her day to day care and coping. I lived a couple of hours from Mum and my only sister lives in the UK. Again we found that just wasn't adequate as Mum continued to deteriorate and within 11 months of her first move, I moved her to a locked assisted living facility, within a 15 minute drive of me. This worked for a year until she broke her pelvis, 3 months in hospital and then we had to place her in a long term care facility, sadly she then broke her hip, then rebroke it the day after her operation. My poor Mum has been wheelchair bound ever since. She has had declines over the past two years, but has always rallied back and amazes us all. But there came a time last May when she lost the ability to eat properly (she is on thickened liquids, pureed foods, ensure, etc), she also lost her ability to speak. She rarely eats any of this now, a spoon or two most days for a couple of months. I sing her the little songs she sang to me when I was tiny and research and sing songs from her youth. Mum, though never a large woman went from perhaps 140 lbs down to 80 lbs now. I visit her all the time, love to be there with her and try to make her smile. But now, when I visit, she is very nearly impossible to wake. Mum now has epileptic seizures from time to time (she is on medication for this) and constant tremors and jerking movements over her entire body. She cannot hold her head up and constantly has her mouth partially open and drools, which has even caused an infection on her upper chest and throat area, with some small white discharge. I've of course brought it to the staff's attention. The only other medication she is still on is Tylenol for pain management. The miracle is that her heart and kidneys are just fine, it's just this damned horrible horrible disease that is slowly killing her. One of the nurses the other day said that when he went on vacation in early August he was sure that she would be gone when he returned. I am so afraid and sad and discouraged. I hate this all for her, and if she could see herself as she is now she would be horrified. I worry about pain as she sometimes grimaces a bit, and have told the nurses repeatedly about it, but they think she's ok. Should I insist more? Her arms have become quite rigid and held close to her body, her hands are often clawlike. Can this be causing her pain? I do mouth care for her when I'm there and she seems to like to suck on the sponge, is this a reflex or is she thirsty (I ask because she will only take 1 or 2 spoonfuls of her thickened juice. The other day she didn't swallow anything that was put in her mouth and it all came pouring back out again, then she started choking? Please tell me how I can make it better for her. Sometimes her face is quite grey, and her arms are purplish. She also seems to have some apnea. The changes aren't that rapid, but each time I see her I think it may be the last. The one thing that still remains of my mother is her beautiful brilliant smile. When big things like this came up in my life I would always talk with my Mum, but Mum doesn't live there anymore.

Lor

 
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Old 09-30-2013, 09:35 PM   #2
Gabriel
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Re: Looking for Insight, end stage

Lor, I understand exactly where you are. It is where I was last December. You are doing all that can be done for your Mom. There is truly so very little that you can do except hold her hand, sing to her, tell her how much she is loved, and cherish each day you have with her. From what you have described her, your Mom's time is short. But there is no time table. Each has their own time table and there is little that we can do to change that. So go in each day as if it is your last and bring out moment of joy with your Mom. Yes, it is the disease and there is nothing we can do about that.

Mom was walking until July of last year. She had a UTI which literally knocked her off her feet. I do believe it prevented those hip breaking falls so in a way it was a blessing. But it was also the beginning of the end. She was on mechanical soft and then on puree and thickened. Her weigh was about the same as your Mom's. From 140 down to below 80. She had a seizure in early December. Her Hospice doctor explained that because of all the damage to her brain that it was misfiring causing the seizure. We truly thought she would not recover but she did. When the nurse walked in to find me feeding her soft scrambled eggs, she called her the Christmas Miracle. But that would not last. After Christmas Day she started to decline rapidly. She was in bed, eating and drinking very little. The same partially opened mouth, breathing irregularities, and little response. She stopped eating totally. There was a gray tone to her skin and cynosis (the purple color) in the extremities. That is actually the heart trying to supply blood to the important parts of the body and ignoring the extremities. It is typical. The last 24 hours there was a lot of breathing difficulties which some do experience, others do not. Mom's final journey lasted about a month in total. She won her battle with this disease on New Years Eve.

A few things that I learned. If Mom didn't seem to want to eat, it was ok. She would choke on the food or pocket it (leaving it in her mouth without swallowing). Choking can cause aspiration pneumonia which is food being aspirated into the lungs. There is no cure. If I gave Mom anything it was water on the mouth sponge. Water will not cause aspiration pneumonia. The hospice doctors and nurses assured me that she did not feel the same thirst and hunger we did. This is one of the effects of this disease. The brain just doesn't tell them that they need the nourishment. As for the pain, I had noticed long before that Mom didn't seem to feel pain. She didn't like to be touched but that was not pain. That was sensitivity which is typical. Mom did have Roxanol. It is a liquid morphine. It was not used for pain but for her difficulties with breathing.

One thing I did do was to tell Mom that it was ok for her to go home. I told her I loved her and that I would be ok. I told her what a great Mom she was and that Dad was waiting on her. It may sound odd because it would appear that they can not hear us, but that seemed to calm Mom and I know it calmed me. I do believe it helped the transition for both of us. When she finally left us, there was a strange mix of grief and relief. Grief for what she had gone through and my loss of my Mom... but relief that it was over for us both. Whatever you feel is normal. So allow yourself to feel what you need to feel.

For you, and your Mom, I wish an easy transition. I wish for you the strength, courage, and comfort that you need. As I said to start with, there is no time line and no way to predict. Just move through each moment as it comes. It will be on her time and all you can do is be patient and enjoy the time you have left with her

Love, deb

 
Old 10-01-2013, 07:53 AM   #3
totallydunn
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Re: Looking for Insight, end stage

Deb, thank you so much for your kind informative reply. It helps to makes some sense out of this roller coaster ride. I know Mum can't have that much time left and I try to make each visit a memory, oddly several months ago I told my mother not to worry if she couldn't remember anything, that I could and would keep her memories safe for her. I also told her about a month ago that when she got tired of fighting it was ok if she went to Dad, that my sister and I would be fine. I told her how much we all love her and that she was the best Mum ever.

I don't know what will finally take her, but for now, we are in limbo and making the most out of it.

Thank you again Deb.


Lor

 
Old 10-01-2013, 07:55 AM   #4
totallydunn
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Re: Looking for Insight, end stage

Deb, thank you so much for your kind informative reply. It helps to makes some sense out of this roller coaster ride. I know Mum can't have that much time left and I try to make each visit a memory, oddly several months ago I told my mother not to worry if she couldn't remember anything, that I could and would keep her memories safe for her. I also told her about a month ago that when she got tired of fighting it was ok if she went to Dad, that my sister and I would be fine. I told her how much we all love her and that she was the best Mum ever.

I don't know what will finally take her, but for now, we are in limbo and making the most out of it.

Thank you again Deb.


Lor

 
Old 10-01-2013, 09:59 AM   #5
Gabriel
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Re: Looking for Insight, end stage

Lor, that is all you can do You got it right! As difficult as this time is, there are blessings to be gathered. We tend to want to know what to expect, we need to know why symptoms are happening, and we want to do something positive. We get wrapped up in the physical aspects. It is a time to quiet our spirits and stay in the moment with our loved one as much as possible. Just be with your Mom.

Love, deb

 
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