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A Fall...Decline...Hospice,,,in 4 days
Mom has been in an ECF for almost exactly a year now
following a hip fracture and has been on a pretty good plateau for months now –
pretty much stage 5/mostly 6. A little more trouble with word-finding, a little
more trouble with short term memory, but not bad. Mostly continent. Content and
Tuesday I got a call that she had fallen in the bathroom
(using a walker) onto her backside, but there were no apparent injuries, not
even a red mark. Next day she was walking as before, working with PT, no problem.
Her right foot had been swollen for a week or so, but they were just keeping an
eye on it.
Today I went to see her about 10:30am and she was still
in bed, dozing, with oxygen on. I went to her nurse to see what was up and she
said Mom had been complaining of a lot of pain from the fall, so they did
xrays, but showed no fractures. They also did a Doppler sonogram on her leg and
found a blood clot, in spite of her being on a blood thinner. They are pretty
much giving her pain meds whenever they can to keep her comfortable and they
seem to be working except when they have to turn her to clean her, etc. Then
she cries out pitifully, even though they are gentle with her. I told her nurse
I was thinking it was time to give hospice a call and she just kindly said “yeah.”
So I will be meeting with them in the morning.
This afternoon her nurse practitioner called after seeing
her to discuss things. She left a lot of the decisions up to me – but It’s a
tough spot to be in. My siblings are both out of town but visit when they can.
However, since I am the nurse in the family they leave decisions up to me and
are fully supportive of me. So many dilemmas. I wonder if a UTI is behind some
of this…but obtaining a specimen would cause her a lot of pain, whether from being
cathed or put on a bedpan. They could start her on another blood thinner, but
there is a risk of bleeding if she should bump her head. But if we don’t, part
of the clot might break off and go to her heart or brain.
Mom is a DNR and I know what I DON’T want done – no CPR, no
hospitalization (except for a fracture or something like that), it’s just the
in-between decisions that are so hard. My Dad died after 10 years of wrestling
with Alzheimers…all the way to the bitter end of stage 7. I was hoping Mom was
not going to have to go that far, but now that we’re here, it’s all happening
too fast. I’m not ready for this.
Sorry for such a long post – it’s just been a difficult
day. I’m hoping hospice will help me sort through these thoughts and feelings.
They were a big help with Dad.
I do have a very patient DH who is my go-to support. Plus long phone conversations with my sister who is out of state. My brother is currently in FL facing the hurricane, so I just keep him updated. Plus a couple of good church friends who have or have recently had parents with this awful disease. So I am very blessed there. I meet with hospice this morning, so I'm thinking they will give me some perspective as well.
My mother has been on hospice for a couple of years now and we have had ups and many downs, but I believe she is truly at that "less than 6 months to live" stage right now. There are some things I can control (UTI's) and for those things, I do, but there are some things I won't and for them I'll let "fate" run it's course. Can you perhaps lists the things you can or want to control and continue to work on them, and have a list of issues you cannot or don't want to control ?
For example, since my mother is so ill now, if she had a fall and bumped her head - I would not seek evaluation. I know many people with dementia decline severely after a fall and I feel for my mother that would be a kindness at this point of her life. Other things I still treat like constipation.
I hope your mother is just having a bad few days and will bounce back. My mother did so on many occasions.
It is so hard, these no win choices.
I'm going to try to make calls like this- you know those horrible post-earthquake pictures where a person is trapped under a beam- they won't live if they get removed or won't have much of a life if they do- tons of surgeries , endless pain, missing limbs etc. Plus no home to return to.
I'm going to think like that- anything I can do to make my PWD being under the dementia beam more physically comfortable --doing it-- but things that cause pain or drag out being under the beam, no.
I’m sorry you are having to go through this. I know you will make the best decisions for your beautiful Mother.
Sending you both peace and comfort. Please keep us posted.
Thank you everyone for your kind words. I knew I would find understanding here. I mainly just met with the admitting nurse from hospice today, but she was quite helpful and compassionate. Mom had had no output in almost 24 hours, so I was thinking renal failure was setting in. They had an order for a urine specimen, but no luck. She drank some Ensure this morning and has been taking water well. As I was getting ready to leave, she said she had to go to the bathroom. (she's on bedrest now due to the blood clot in her leg) so they put her on a fracture pan (a small bedpan) but she was unable to go due to the pain. But later in the afternoon she was incontinent a couple of times. Good news that she had output, but no specimen. They changed her to a low dose of liquid Morphine since her other meds weren't holding her and she seems more relaxed now. She even ate a few bites of dinner and again drank her Ensure. I was able to talk with her a little more and she even Facetimed with her grandchildren (mostly just listening).
So my plan now is to test for a UTI if possible, but if unable to, no cathing her, since that would cause discomfort. Just watch and wait on the blood clot in her leg as long as her circulation there stays good and causes her no pain. They are checking the leg frequently. I feel at peace with this plan for now. One day at a time...
Again, thanks for all your thoughts - it is helpful and encouraging to know how others are dealing with this.
What a difference a week makes, and not in a good way. Mom has continued to rapidly decline. She is now refusing anything orally. Earlier today she agreed to take a little Jello, but had a huge coughing spell, so I think that her refusing is for the best because of the aspiration risk. She is getting Morphine for pain and that seems to help. I suspect that even though xrays after the fall were negative, she might have a compression fracture of her spine causing her back to hurt. She does have osteoporosis. My sister came up Monday and that has been a huge support to bounce ideas and thoughts with. Mom sleeps in between the morphine, but when awake only answers with a word or two very weakly. She looks so pitiful, but does seem to be comfortable for the most part except when they reposition her.
The hospice nurse, aide, social worker, and chaplain have all visited us at various times today and they were all so compassionate and kind. I feel at peace with the direction she is heading (although my true wish is that she be healthy but...) Mom was diagnosed only 2 years ago and was maybe showing subtle signs a year prior to that. Dad suffered for 10 years with this and I would never want her to endure this for 7 more years.
Oh, VW, thank you for posting. Just in the last month we've started down the path of reviewing DNRs and POLST directions, meeting with hospice, figuring out all the next end-of-life stuff. It's so helpful to read about your experience.
I hope you and your family have peace amongst your grief, and that your mom has a serene passing.
No guilt, no no no. Sounds like she had a pretty good last year considering and as you wished in those sad wishes we make here in shadow land she probably isn't going to have to go through the extra years and years your Dad did.
You've done a great job, you've balanced what sounds like a big family through all of this too.
Just spend quiet time with her now. Let her relax, she'll find her peace.
Be gentle on yourself. He's got it now.
For your own piece of mind I would get a cath sample to rule out an UTI. I was catheterized once and felt nothing.
This is so hard.......
We visited my MIL Tara today, and what you describe with your dear mother is almost exactly what we are experiencing. She is no longer wanting to eat, her meds are being administered by mashing them and putting them in some kind of liquid formula. They are trying healthy milkshakes, and even blending her meals, but to no avail. She was barely able to utter any words. I am so sorry your mom has had such a terrible decline as well, but it sounds like you have amazing care, and they are managing her pain. Please know I am sending prayers and peace your way.
Tara seemed a million miles away today, much more than I've ever seen, and is fading very quickly. Since she was a gifted painter, I brought a large coffee table book of Degas paintings that we were able to place on a table in front of her. She did light up a little bit! She used to paint Degas ballerinas to practice her craft. That glimmer of light in her eyes will stay with me forever. I think it's just so important to tell our loved ones how much we love them, that they are incredibly brave, and our love will continue. I am happy to hear your sister is with you now.
Please take care and let us know how everything is going. What a wonderful daughter your mom has!!