Mental Decline & Dependency/Coping With Aging Loved Ones

Noddy- The local hospice is "the only game in town". I heard the story second hand, and I really don't want to press my friend. Considering her predicament, she is in remarkably good spirits. Recently she confided in me that "this entire business of dying is really awful".The sad thing is that the two of them are such a loving couple. It must be torture for her to watch her husband die, by inches.

When my mom was in hospice, about a month ago, her red blood count was very low, and the doctor sent her to the hospital for transfusions. The hospice nurse was a bit ticked off about that. Apparently this doctor was an outside consultant contracted by hospice. The hospice nurse made the remark that this doctor never should have ordered the transfusion, and alluded to the idea that he really did not understand the rationale of the organization.

From what I have gathered through my experience, hospice deals with terminally ill patients, attempting to keep a patient comfortable, while "nature takes its course". So what we have is a medical community working at cross purposes. The doctors are attempting to cure, while hospice is more concerned about keeping a patient comfortable during the dying process.

I personally like the hospice concept. It allows a person, who has decided that there is nothing more to be done in terms of taking life saving measures, to die in comfort and dignity.

Phoenix, my BIL recently passed away at home in Tampa under the care of hospice. My sister had good things to say about the hospice service and support provided. She's in the 'New Tampa' area. I could get some info from her on who she was working with if it would help.

Phoenix--

My mother chose to die in Home Hospice. We were tactfully drilled that if she slipped into a coma or showed other signs of End of Life that we were NOT to call the ambulance.

I know she had oxygen tanks for her last months.

Life is full of new, learning experiences. Thanks to modern medicine most of us don't learn about death and long dying until we're dealing with the situation hands-on, without a rulebook.

JPB- It was probably a branch of the same organization. I did not mean to come off as critical. I really appreciated what hospice did for my mom. It did make a big difference at the end of her life. I was just questioning as to why they would deny service to someone who is obviously dying.



http://www.lifepath-hospice.org/

Noddy-

I got the same message about the ambulance. Actually, I did not want her to go to the hospital. The professional fuss that is made in hospitals was too traumatic for her as she declined.

I also was in a double bind. Since my mother was in an ALF, their first thought, if anything untoward happened, was to call the ambulance. A few weeks before she died, I wrote the ALF a complete "cover your ass" letter.

It stated that if my mother fell, or took a turn for the worse, they were to call me, and if I were not available, to call hospice. I wrote that I would not hold them responsible for anything negative that would happen to my mother if they follwed my instructions. They seemed happy with that.

My mother has been living in an Assisted Living Facility for three
years.Then last month she contracted bilateral pneumonia and and went
into the hospital. She has a lot of issues going on at the same time.
She had had a stroke about six years ago that severely weakened her
left side and led to her needing a wheelchair to get around. She had
lung cancer in one lung that was brought to a stop by radiation and
chemo therapy.

Now a new tumor has been found in the other lung. We were getting her
set up for a new procedure called Radio Frequency Ablation when this
latest bleep hit the fan. As a consequence they got her started on
regular radiation therapy without delay. She is in a very weakened
state now and was tranferred to a Nursing Center. Due to a
combination of things - limited funds, the unlikelihood of regaining
even the strength to be in the Assisted Living Facility, the
continuing effects of the cancer (her treatment is described as
"palliative, not curative") - she is in the Nursing Center to stay.

This has all come at her so fast that she is having a great deal of
trouble coping with it. I'm not talking dementia here, but she seems
just so confused and uncertain all the time. I don't want her to be
overcome by all this and just slip into her own little world. She is
by nature cheerful and optimistic and a lot of that remains. I just
hope that this shaky state will pass soon.

Oh George, of course she is confused and uncertain. She has had multiple illnesses, has little energy, and now is being moved to an unfamiliar place. She also probably realizes that her life is now on "hold", and that her time is limited. That is more than enough to confuse a younger person, but when you are older it is all the more difficult.




This frame of mind may remain, and it may not. She is doing what she can to cope with the situation, which is not a happy one. All that you can do is be there for her, and keep letting her know how much that you love her.

Take her lead. Does she know that she is receiving palliative care? If so, she knows that there is nothing that can be done to cure her, but simply to fend off the inevitable. Take her lead. Is she the sort of person who can talk easily about her mortality, or is she in denial? If I were you, I would listen to what she is saying, and if an opening appears, be ready to talk about death. If not, I would suggest that you don't bring up the subject.

Another thing is taking care of yourself. Even though my mom was 97+ when she died last week, it still was not easy for me. You need to expect unforseen emotional reactions from yourself, when you least expect it, when the process progresses.

Take care, and let us know how both your mom & YOU are doing. We are here for you!

Phoenix, thank you. You're right about my taking her lead. Sometimes I
make myself crazy "rehearsing" what to say with her.

Yes, she understands about palliative and she is quite realistic about
death. She often says she's had a good life and is grateful for it. In fact,
a lot of her life was damn hard, but hers is one damn tough generation.

I think I'm dealing with it OK, a little stressed out.

Thanks again, writing this out out helps.

George-You might want to talk about your life with her. Bring up some happy anecdotes about some memorable times that the two of you had together. Talk to her about what she means to you. If the two of you are able to get a good, solid dialogue going, it will be helpful to both of you, and will help relieve the stress for both.

George--

Does your mother want to discuss death--or her death--or life after death?

Would a member of the clergy give her comfort.

Is the staff in her ALF fairly constant? Can you gossip a little bit with her about the various people who share responsibility for her care? Talking them over might help her keep them straight in her mind.

It is hard to trust people when you are confused about who they are and if you don't trust the keepers, it isn't a friendly asylum.

Phoenix, it's funny you said that. We were talking about "old times" the
other day. We're not real good at discussing feelings and what we mean to each other. It sort of comes through as background music.

Hi Noddy.

My Mom is only slightly more Catholic than the Pope and is firmly
convinced of life after death. I like the clergy idea. I need to tell the
pastor at St. Pat's and I know he'll drop by for visit.

The staff seem very nice. One of the aides came by when she heard that
Mom had not eaten lunch because we had a meeting with the case worker
right after she got back from radiation.

The aide, who speaks with a Hispanic accent, came in and scolded Mom in
a teasing sort of way about not eating. It was all I could do not to add
"You got some 'splaining to do!"

George, watching our parents age, deteriorate, and ultimately pass on is difficult under even the best of circumstances. Your mother has been through a lot of upheaval in her normal routines. She'll settle in to her new surroundings in her own time and in her own way. It's good that she can still be cheerful and optimistic even in uncertainly.

Keep writing, there are plenty of folks here to listen.

For years, because of long standing resentments about past hurts, I had always found it difficult to hug and kiss my mother. She, on the other hand, rarely told me that she loved me.

In the last few years though, there was a shift in her. I think that after all this time she realized that I cared for her, and was willing to do all that I could for her. She started telling me what I meant to her, that she loved me, and I started responding by becoming more physically close. All in all, it was a win-win situation.

Thanks JPB. I can't tell you how therapeutic this is.
It's hard to watch her world shrink around her.

I'm glad to hear you and she finally got closer; that must must have been an emotional roller coaster.

I've never had any issues about our feelings for each (with my father, it
was a very different story), we just never talked about that sort of thing
in my family.

Phoenix, my mother has become much more physically affectionate, too. She loves to hug. Sometimes it's hard to get her to let go! We tell each other "I love you" everytime we're together. It's very touching.

I'm sorry if I missed it, but did you have a funeral for your mom?

Swimpy- No, I didn't have a funeral. You probably did not read my post where I mentioned that my husband had undergone prostate seeding on a Thursday. Mom died two days later, on Saturday. With all that was going on, I did not have the wherewithal or the inclination to plan anything.

I had her cremated, and she sits on my dresser in a beautiful urn that is really "her". She would have loved it. She has a plot with my father up in NY, and the stone is already in place. All that is needed is the inscription.

Sometime this summer, I will go up to NY, and then have some kind of a memorial. I still have things that I have to do, as I am her executrix, but as of now, I am taking it slowly. There is no hurry. Between my husband and my mother, I have been on overload for quite awhile. I need to "decompress" a bit before I will be able to act efficiently.

Decompression sounds like a very good idea.

Yes, it sounds like decompression is in order. How is your husband doing? Any improvement?