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Old 09-25-2012, 11:29 AM   #1
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looking for answers - Late stage Alz

Hi All,

My mom according to Hospice and the nursing home is in the late stages of Alz. Today the hospice nurse called me and wanted to know if we wanted to give Mom another blood transfusion. She just had one on 8/9/12 and it did not help her, so I told them that we did not want her to go through that again when there is no improvement. I then cried like a baby I just want to help her....I want her to start talking again..I want her to start walking again. I do not know how I will live in a world without my Mom....But rest assured I do not want her to suffer. Mom sleeps all day, she even sleeps through her meals, you have to wake her up to take a bite. She is so tired. Hospice started supplements yesterday, because she is having swallowing problems. Oh Lord please guide me and tell me I am making the right decisions for my Mom. Just needing wisdom and support right now.

Love,
Julie/CAJ

 
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Old 09-25-2012, 12:59 PM   #2
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Re: looking for answers - Late stage Alz

Julie,

I am so sorry that your Mom is getting worse. I agree with you that there should be no more blood transfusion since she would hate the IV very much. If she is in severe stage, it is better that she has comfort care. It really sounded like my late FIL in early July although he was sick with different issue (oxygen and heart issue.) The last week he was very weak and had eating issue. It was like he could no longer be on his own and needed lots of help - he was like a weak baby. We didn't send him to the hospital and he was treated with comfort in the nursing home. Suddenly he left with heart attack or stroke in his sleep in one early morning. He could not walk and talk and slept all day... We didn't even get to hospice yet.

It is sad to see this but it is part of Alzheimer's or dementia. I think now comfort care is the best. If she can eat ensure or pureed food, it is good, but if she cannot eat properly, it will be a big decision for you - feeding tube or let her go. Comfort care does not accept feeding tube or aggressive treatments. So maybe you need to prepare for the end. It is up to you to decide if you want to just offer comfort care instead of hospital care or treatments. It is entirely up to you and your family. There is no right and wrong about this. We chose to have no hospital and no IV and etc. But he left earlier than we thought (he was gone in a week after he fell sick again with breathing issue.)

Pray for you that the Lord will guide you on this. Please understand that either way, there is no guilt. You are helping your Mom to go with comfort.

Hugs,
Nina

Last edited by ninamarc; 09-25-2012 at 01:04 PM.

 
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Old 09-25-2012, 01:12 PM   #3
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Re: looking for answers - Late stage Alz

Nina,

Thank you for your support. We already have hospice on board and I am so glad I had the chance to ask my Mom if she would want a feeding tube and she told me no. So it will be hard for me to follow through and watch her slowly die, but it will be my last gift to my Mom (to do what she ask me to do) and I love her so much, so this is really hard. I am getting ready to go see her now and see if I can get her to eat something. I am so sorry about the loss of your FIL.


Love,
Julie/CAJ

 
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Old 09-25-2012, 02:04 PM   #4
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Re: looking for answers - Late stage Alz

Dear Julie, I am so sorry at what is happening. Of course I had no possible way of knowing what you are going through. I did have a similar experience with my sister about 10 years ago. My sister did not have dementia, but she did have a congenital progressively degenerating neuropathy. One day she fell and hit her head against a window sill, resulting in her paralysis. It took her close to 3 months to slowly degenerate until she finally let go. It was tough watching her go. In the end, what helped my family was keeping in mind the question: if she was able to tell us, what did she want to do? In the end we had to let her go. That was what she really wanted. Now in your time of crisis, perhaps it would help keeping in mind, if your mom can talk to you, what would she want?

Last edited by Luau; 09-26-2012 at 05:59 AM.

 
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Old 09-25-2012, 07:49 PM   #5
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Re: looking for answers - Late stage Alz

julie, my heart goes out to you, I was in your exact shoes 6 short months ago. Follow your heart and know that you are making the right choices with the information you have, you know what your mom wants follow throw with her choice it is the last gift that you will give your mom. I did the same as you after I made a very similar choice, I cried and cried. The next little bit will be hard but know we are here for you when it seems you can not go on, now is the time to tell mom how much you love her and in your own way tell her that you are following her wishes. Please make sure you have someone to hold you and hug you and tell you what a great daughter you are. You will be surprised how deep we can dig within ourselves to find the courage to make it through to the next day,hour or minute.
Sweetie if I was closer I would come give you a hug and hold your hand, for now I am sending you strength for what may be a couple of long days, weeks ahead
Hugs judy
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Old 09-26-2012, 03:35 AM   #6
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Re: looking for answers - Late stage Alz

So sorry you are having to go through this. Since I have not faced your situation yet, I can't advise you. I feel your pain and have tears for you and your mother. I feel there is a time to stop fighting and let nature prevail. I just hope I can take my own advice when the time comes. Will keep you and your mother in my thoughts and prayers.
Aras

 
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Old 09-26-2012, 03:58 AM   #7
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Re: looking for answers - Late stage Alz

Dear Luau, Judy and Aras,

Thank you for your support...Judy thanks for sharing your painful loss with me, and I thank you for the hug, I am hugging you back (very tightly) it brought tears to my eyes. I will find the strength I need because that is something my Mom has shown me...How to have courage and love during difficult situations. It is scary, but I will follow Mom's wishes, no matter how hard it does get. This board is the best it has been a long ten years, but everytime I get scared I run to this board and post and then God's angels always are there with support. I pray that I can return the favor some day!

Love,
Julie

 
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Old 09-26-2012, 07:06 AM   #8
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Re: looking for answers - Late stage Alz

Julie, you are doing the right thing... what your Mom would have wanted and what you know to do. There is no need to put her through distress when it is not going to change the outcome. It is natural that we want to fix it. We want them back as they were. We also know that is not possible. It is the conflicting emotions that get us all tied up in knots. Focus on what you can do. You can be there for your Mom and keep her as comfortable as possible. It is not an easy journey but you have come this far with her and you will amek it to the end... one day at a time... one moment at a time. Know I keep you both in my thoughts and prayers. Her for peace and comfort, you for courage and strength followed by peace and comfort.....

Love, deb

 
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