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Switch to Forum Live View Talking to elders about palliative care?
6 years ago  ::  Apr 28, 2009 - 2:50PM #1
Hillary_fields
Posts: 40


When my grandma began to succumb to her final illness, she also suffered from dementia, so she was the last to know. She couldn't process medical information and her memory was gone, so the reality of her sickness didn't sink in. A stubborn woman, she didn't like change and she didn't like to feel pushed aside. Rather than acknowledging she was dying, she began to accuse us of not loving her enough and treating her like she was a burden when we urged her to have palliative care instead of seeking a non-existent cure. She lived alone in a small apartment and did not want to go to a nursing home, though it was becoming increasingly clear she needed help. We weren't up to the challenge—we weren't medical professionals and we didn't have the knowledge to handle her symptoms on a 24/7 basis. Finally we forced her to go, and she was VERY upset.


 


Within a short time she had declined significantly. Her memory was so bad she asked the same questions on an endless loop, not even pausing to hear the answers, which she could not retain in any case. Then she broke her leg getting out of bed in the middle of the night because she was confused. She had to be moved to another ward for severely declining  patients at the end of their lives. Within a few weeks more, she passed away.


 


The hardest part for us was her accusations and failure to understand that we were doing what was best for her, not simply what was most convenient for us. Whenever we'd ask her to understand why we the doctors recommended palliative care, she completely closed down. At the end we had to lie to her about the treatment she was getting, lest she grow agitated and make herself sicker.


 


Have others had similar experiences dealing with their parents or grandparents at the ends of their lives? Or different experiences?  How did you handle the subject of palliative care?  What did you say?


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6 years ago  ::  Apr 29, 2009 - 10:33AM #2
harvest99
Posts: 21

When the time came for him to have palliative care before  leaving the hospital he had been fussing a little, so I was able to tell him that I was going to bring in better care for him. That satisfy him for the moment.
Then when we moved back into the Nursing home and we knew he wasn't getting better, I just told him I  was bring him more care to watch over him more than the nurses could, since they had so many to care for. That he was very important to me and since I couldn't be there 24/7 I was doing the next best thing and that was to bring in
extra care. This way I could make him more comfortable, and by having more care for him would provide that service to me as well as to him. He had mix feelings but he soon learned he did have more care.
It ease the pain some for me, but didnt' take it away but I know I couldn't handle his passing if I didn't have Hospice...
At the end he was in a deep sleep and wasn't aware of who was with him or not, yet I knew someone was watching over him. I'm so thankful they were. Then in the end I was there with him
hope this helped

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5 years ago  ::  May 28, 2009 - 6:01PM #3
swinter5
Posts: 71

My elderly Mother had a series of ischemic strokes, that was later labeled Alzheimer's disease.  She had stopped fixing meals for herself, and was letting things burn on the stove. She lived alone in a big house, and my cousin was the first to notice that Mom wasn't Mom any more.  She failed to pay her bills on time, forcing the telephone and electricity to be cut off.  After long, soul-searching talks with my dear husband, we decided to move Mom in with us, which was 60 miles away.


The move took us 2 months, and when we got her home, she had her own room and bath.  I was allowed to quit work to take care of Mom 24/7. while my husband still worked.  Mom had a monthly income from a trust, that we used for her care.  Everything went pretty well for 4 years, until the night my Mom was refusing to eat, and my husband said - "Either she goes tomorrow - or I DO!"


The girl who helped me occasionally with Mom came over, and we went through the Yellow Pages for a  nursing home that would take her ASAP.  Fortunately, we found one, but it would have to be "private pay," sticking us with a $2,200/month bill.  After I had finished signing her in, I went back to her room, and she was crying, saying, "You've put me in a nursing home."  She and I had a good cry, when the nurse came in.  She asked if there was anything that would make Mom more comfortable.  I mentioned that she had a little Chihuahua that was the love of her life, and the nurse said - "Bring her along!"  I was stunned, but being  private pay had its rewards!  I brought Buffy the next day, and Mom's stay at the nursing home went smoothly.


On a September 1 of  1991, the doctors called and said she was "crashing."  It was 30 miles away, but I gathered my good friend, and we went.  She did not die at that time, but continued to shrivel away, under a DNR (Do Not Resuscitate) order, refusing nourishment, until she became a shell of her former self.  On September 30, I was called in the middle of the night, and the doctor said she was passing.  I couldn't drive at night that distance, but I was sooo grateful to the team of doctors, nurses, and LPNs who sat with her until tlhe end.


I guess I learned that God does things in His own time-table, and no amount of acceleration or diminution will change it.  I bless the medical community at the nursing home for their compassionate care of my Mom.  Buffy was taken by another family at the nursing home, and that little dog prolonged my Mom's joy for as long as she could feel it.  Alzheimer's robs the person who has it of their dignity, memory, and ultimately - life.  The only thing I was thinking about was making my Mom's last years as pain-free and comfortable as possible.  It wasn't easy by any means, but I think my husband and I accomplished it.  RIP, Mom - you deserve it.

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5 years ago  ::  May 31, 2009 - 11:25AM #4
Cuddles.beliefnet.com
Posts: 1

My mother-in-law was needing of palital care or hospice whichever you wish to call it, but she refused it for a long time.  Then one day she was faced with a great deal of medical expenses, and she realized that her children would have to take on this finacial expense that she finally agreed to palital care.  They helped with her medical expenses, and is now coming to her home several times a week.  It has taken a huge burden off her children, and has also given her  people she has grown to like, and trust to help her deal with her terminal illness.  She told me it helps to have someone there to talk to, but she hasn't totally used their care she won't let them help her with a shower.  Now she has been told that she may have cancer again, and I don't know how she will deal with it.  She has remarked to me in the past " if I ever get cancer again I will not do anything for it".  Now what do we do just let her give up?  I can't and wont do that, but she is VERY stubborn, and sert in her ways.  I need some advice, so if anyone can help me please... Thank you for listening, and letting me share. Brenda.

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5 years ago  ::  Jun 03, 2009 - 9:38PM #5
Beachdogs
Posts: 1

I have been with hospice for 5 yrs now and so feel somewhat qualified to address your concerns.  When we talk about palative care we are talking about making the person as comfortable as possible during the (usually) last mos. of their life, due to illness which is not fixable.  So, when your loved one says that they are not willing to continue fighting their illness and to remain with their hospice care that would make sense to me.  The fact someone has gone onto hospice means that their doctor feels they have 6 mos or less left to live.


It is totally the individual's right to decide when they have had enough....be it treatment from whatever source.  A person DOES tire out and many choose to live the remainder of their days feeling better than they would if they were on treatments of some kind (chemo, radiation, pills that make them sick just to gain a few extra wks or mos but feel crappy the whole time).  That may be a difficult pill for you to swallow, to think that your loved one does not want to continue to fight their disease, but you might need to examine your need to keep that person around just for your own reasons....would not the more loving way be to allow them to have quality care, out of pain as much as possible, and able to enjoy their final time with you? 


It's always hard, being in this situation and I'm having almost the same story with my own mother right now...diagnosed a1 1/2 yrs ago with terminal cancer and has been through all the usual tmts and its not stopping it.  She is now faced with trying experimental drugs, which are making her sick, or stopping all tmt.  She is very tired of it all and we all understand.  It's never alright to lose a loved one, but we should be able to understand when they have reached their limit.  I'd rather she stopped and went onto hospice when that time comes.


I recommend you talking with the hospice social worker or nurse and they can help you put things in perspective and understand how your loved one feels. I hope this has helped you some....  peace be with you.  Beachdogs

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5 years ago  ::  Jun 04, 2009 - 7:23AM #6
Anglo66
Posts: 1

It is never easy to think that your loved one is ill.  You love them and you want to do everything possible to make them well again.  However there is a stigma about Hospice that frightens or intimidates people.


As a former hospice volunteer I would like to try to offer some words of encouragement and advice if I may.  There is one very important concept of Hospice care that people have a real hard time wrapping their head around.  By being taken under the wings of a hospice, it usually means that the person's doctor feels that there are no more medical roads to venture down and that subjecting your loved one to more and more tests and treatments are most likely not going to change the outcome and are unneccesary.  You have reached that fork in the road when a decision has to be made. 


The wonderful part of hospice care is the transition from cure to quality of life.  No more tests or treatments.  No trials or experimental drugs. Now instead of thinking of it as giving up, try putting it in a different perspective if you can.  It is all about QUALITY OF LIFE and doing as much as possible as to alleviate pain and discomfort.  You are giving them the dignity and respect of making a decision on their life.


From the time spent as a volunteer, I saw and witnessed that once a patient is familiar with where they are, ie hospice, they were neither worried or afraid.  They knew what hospice meant. In fact, in some cases, their state of mind improved, albeit maybe temporarily, because the stress and strain had been lifted. The group that had for the most part, the biggest problem with this concept was family. Questions, questions and more questions and not really sure of who to turn to. What I would say to you in this instance, is talk to the nurses and staff.  Talk with the ministerial staff and they will be able to  answer these questions.  To offer you words of encouragement, advice and comfort because they have learnt from experience, the emotions, the doubts and fears that you are know experiencing.  You are not alone.  Lean on them.  They will be the prop for you when times get tough.  They are there for you.  But, most importantly, try and take comfort from the fact they are there for your loved one.  Making their transition as comfortable and as pain free as possible.


I hope that this has helped.  In closing, please remember, that when the time comes, a child of God is never alone.  He is there watching and waiting to welcome them home.  God bless!

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4 years ago  ::  Jun 01, 2010 - 3:48AM #7
Jacob
Posts: 1

Getting palliative care for a loved one is a very difficult decision, especially if they are at the last stage of their illness. I can completely understand what you must have gone through with your grandmother. It may not be as easy as it sounds, but you need to communicate openly and freely if someone in the family needs palliative care. Besides explaining to them why it is needed, you should also be prepared to listen to them patiently. Finally, try to find them a setting that is as comfortable as possible for them.


Meridian at Home provides complete palliative care in New Jersey with a team that is compassionate and understands the needs of the patients and their families at this delicate stage of life.

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4 years ago  ::  Jun 02, 2010 - 2:41PM #8
jesusfreakgal
Posts: 938

I am reminded of a lady I used to care for. She had alzheimer`s disease. One of her greatest struggles (because of the alzheimer`s disease) was regarding her deceased husband. He had been dead for 17 years, but of course, could not remember this. There were times I would tell her he was away because of work (he worked for the railway) and she did not always believe this. Often she would insist on calling the police, but I knew there was nothing they could do anyway. A number of times she did not go to bed until VERY late at night because she was so worried about her husband (he had been sick at the end of his life and I think she was remembering this). I know you are never supposed to tell one with alzheimer`s disease they their spouse is dead (they will likely greave like they just found out the news), and her constant forgetting this, and me wishing I could just say he was dead was hard. I think the pallitive care/ hospice topic can be hard for anyone, whether its the `patient`or their family. Some persons might be in denial that they are dying, while their family knows full well, and know that they (the family) can't care for the person anymore. I think the best thing to do is to talk to your older loved one(s) before they are sick about what they want done in the event they become sick (with anything, alzheimer's, cancer, heart disease, and more). If they say/ suggest they want what you can't give, you can speak up now, rather then have an unhappy or hurt relative when the time comes to do whatever needs to be done (homecare, hospice, hospital and such). When talking to your loved one about this, it could be good to bring up advanced care directives, living wills, and power of attorney. This way, end of life decisions won't be a struggle, and you will know what your loved one wants now.


JFG

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