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Alzheimers is the least of our problems now
baydey
Posted: Friday, February 17, 2012 11:43 AM
Joined: 1/21/2012
Posts: 43


Who knew that AD would ever play second fiddle? For several years now, it has been first and foremost in our life. Almost every thought and action has been filtered through Alzheimers. Funny how mom's diagnosis of terminal cancer and two short weeks can put AD in the background.

 

It is difficult to treat her pain because she does not seem able to articulate how much it hurts. I watch her behavior very closely to determine how she is doing. She sits or lies on the sofa and stares straight ahead. She winces occasionally and softly pounds her fist on her knee. If I ask her if she is in pain, she tells me that it hurts a lot but she thinks it will go away soon. It's heart breaking. Because the cancer has moved to her bones, it is my understanding that the pain can be exquisit. I do not want her to suffer but I did not think it would get so bad so quickly and have been reluctant to 'over treat' the pain. If I give her any more of the pain meds, she will just sleep most of the time and she complains bitterly about being so sleepy. She does not know that she has cancer. She asked twice what was wrong with her and I told her that she has a pinched nerve in her back (cancer is in her ribs).

 

The Dr. says we should just tell her she has cancer. She will be upset but then she won't remember it. I say, why should we even put her through the short-term anxiety? Besides, sometimes she fixates on something and even though she does not remember the answer, she asks the same question every minute or so. Then she would have to learn she has cancer over and over unless we lie to her so why not lie in the first place?

 

I am looking for a website that can provide insightful info on the pallative treatment and answer questions. If anyone knows of such a place, please let me know. It may soon be time for hospice.


MacyRose
Posted: Friday, February 17, 2012 12:11 PM
Joined: 12/15/2011
Posts: 3983


baydey, Oh my gosh, I am so sorry about your mom's cancer but I agree with you, there is no reason to tell her, it will only upset her and cause her undue distress.

 

Here are some websites that might help you find palliative care in your area:

 

http://www.getpalliativecare.org/providers

 

http://www.nhpco.org/custom/directory/index_program.cfm?program=PALL_CARE_STATUS


Gidget P
Posted: Friday, February 17, 2012 12:17 PM
Joined: 12/15/2011
Posts: 62


The time for hospice is now.  They are expert at pain management and will also support the rest of the family through this difficult time.

 

If she were my mother and I knew she had a disease that caused "exquisite pain" I would rather she be asleep than in misery.  I'd give her as much as she is allowed to have any time she exhibited signs of being in pain.  But that's just me, and you know her and what her wishes would be if she could express them well, I don't.


KML
Posted: Friday, February 17, 2012 12:35 PM
Joined: 11/30/2011
Posts: 2105


I agree, now is the time for hospice/palliative care.  I just went to a pain management seminar put on by a hospice organizatoin and they were talking about pain in cancer patients and once the cancer spreads to the bones it is very painful.  They talked about managing the pain.  It is time to contact them.  She may not be in the process of actively dying now, but she does have a fatal disease and they can help her manage her pain.

 

Here's a link for you on palliative care:  http://www.getpalliativecare.org/


dutiful deb
Posted: Friday, February 17, 2012 1:24 PM
Joined: 1/1/2012
Posts: 1884


Baydey,

I am so sorry you are going through this. When my dad had cancer, hospice was wonderful. I don't know what we would have done without them. 

 

.


rose_ro
Posted: Friday, February 17, 2012 1:40 PM
Joined: 12/21/2011
Posts: 2431


I'm so sorry.  Can you tell her she has something you're working to help her with? If she has pain, I think that has to be affirmed (ie, it's not in her head), but I would not tell my mom she has cancer.   it would make her - well, never mind.

 

The world indeed seems a cruel place often!

 

I would contact hospice, is there any kind of topic pain killer that could help her, without causing cognitive issues?

 

Your post makes me want to cry!


AlphaLeah
Posted: Friday, February 17, 2012 2:18 PM

[I'm not yelling, just emphasizing] > IT IS TIME FOR HOSPICE.


They are the ones who are skilled at reading non-verbal pain signals and administering appropriate dosages of pain medicines.


In Canada, it's my understanding that hospice is allowed to use heroin, not just morphine, which apparently treats pain better without the soporiphic side effects (sleepiness). I wish we had that option here in the US for those with painful terminal diseases.


I am so very sorry. Call hospice - you deserve the support <3


rose_ro
Posted: Friday, February 17, 2012 2:20 PM
Joined: 12/21/2011
Posts: 2431


Yes, I would need experts to help me with all you're going to have to deal with.
imissbrisco
Posted: Saturday, February 18, 2012 2:19 AM
Joined: 1/23/2012
Posts: 155


Oh, baydey, I'm so very sorry.  This is moving so fast.  Please do not deprive your mother of the relief hospice can offer; grogginess isn't a great option but is better than excruciating pain she is no longer able to communicate.

 

I would not tell her about having cancer.  As you say, it's going to be news every time she hears it -- and she may no longer understand what cancer is, anyway.

 

Hospice workers, with rare exceptions, are godsends.  I don't know how they do what they do, but am so grateful for their work.  I hope you will find the right options for your mother very soon.  How is your father doing? 

 

(((Hugs))), sweetie.


bela
Posted: Saturday, February 18, 2012 2:31 AM
Joined: 12/15/2011
Posts: 4113


I vote for hospice and I certainly vote for managing the pain asap.  There are a few patients in the nursing home where mom is that just sleep; they are dying but they are at peace via sleeping.  What could be better?  There are moments when they are awake and eat, but back to sleep they go.  I hope I die and get to sleep before I pass.  I would not tell my mother at age 84 that she has cancer...there is no point in doing so; how will doing so help; will it solve anything?  Of course not.  So withhold that information.  Most importantly manage the pain. My father died of congestive heart failure; touching him hurt him.  I'm not sure as I look back why they put him on morphine but they did and he died peacefully which is all I would ever want for someone I love.  Ease the suffering and contact hospice.  They will have wonderful information to help you to help your loved one and you will likely benefit as well.  I am so sorry you and your mother are going through this.  I once posted a signature on the old alz.org which read "no disease is pretty."  My prayers are with you.
baydey
Posted: Saturday, February 18, 2012 8:16 AM
Joined: 1/21/2012
Posts: 43


thanks everyone for the kind words. I will check the web sites you suggested. Since my post yesterday, mom is worse. Her stomach cannot handle the pain meds. She won't/can't eat and is vomiting. I am going to call for hospice help right away.thanks again for everything.
FluffyChenille
Posted: Saturday, February 18, 2012 3:11 PM
Joined: 12/19/2011
Posts: 221


So glad you decided to call Hospice. My mother was unable to tell us about her cancer pain. Her caregivers told us that she moaned a lot in her sleep which to them was a sign she was in pain. I told the doctor I wanted her on morphine....the doctor said, "but she will die sooner"!!!  Dah! She was dying, and she was suffering....so are we suppose to prolong her life so she can experience this pain longer??? I called Hospice in and they took care of Mom and her pain beautifully. Yes, she passed sooner....but she passed in peace. The caregivers said that those in the NH that do not have family or anyone to speak for them...often times suffer greatly because Hospice is not called in and doctors are hesitant about strong pain management. The caregivers watch these poor people suffer and it's heartbreaking. You are making the right choice! God bless you all.
MacyRose
Posted: Saturday, February 18, 2012 5:46 PM
Joined: 12/15/2011
Posts: 3983


If she is nauseous and vomiting due to the pain meds, she may need to be on either Zofran or Kytirl.  Ask her doctor about this.