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A Fall...Decline...Hospice,,,in 4 days
VWwife
Posted: Friday, August 30, 2019 7:59 PM
Joined: 8/15/2017
Posts: 100


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 easy going.

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. 


jfkoc
Posted: Friday, August 30, 2019 8:01 PM
Joined: 12/4/2011
Posts: 17314


please keep us updated.....
harshedbuzz
Posted: Saturday, August 31, 2019 5:23 AM
Joined: 3/6/2017
Posts: 1709


That must feel like a lot of responsibility.

Do you have a good friend who you can bounce this off or even a local IRL support group. Here is good too. I hope hospice brings clarity.
VWwife
Posted: Saturday, August 31, 2019 7:02 AM
Joined: 8/15/2017
Posts: 100


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.

 


TessC
Posted: Saturday, August 31, 2019 12:17 PM
Joined: 4/1/2014
Posts: 4890


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.


Abuela
Posted: Saturday, August 31, 2019 2:01 PM
Joined: 6/24/2012
Posts: 373


So, I agree that hospice should be able to give you some clarity.  This is a very hard call to make, but I was told by a friend that 'pneumonia was the dementia victim's friend'.  What she meant is that the pneumonia takes them and their suffering is over.  Same can happen with a UTI that is undiagnosed.  I hope you get some help with this.
abc123
Posted: Saturday, August 31, 2019 4:08 PM
Joined: 6/12/2016
Posts: 547


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.


VWwife
Posted: Saturday, August 31, 2019 5:38 PM
Joined: 8/15/2017
Posts: 100


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.


VWwife
Posted: Tuesday, September 3, 2019 7:33 PM
Joined: 8/15/2017
Posts: 100


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.


TessC
Posted: Thursday, September 5, 2019 3:17 PM
Joined: 4/1/2014
Posts: 4890


I'm sadden your update was not better news, but it sounds like your mother is getting compassionate care from both hospice and you. It is the best gift we can offer someone in the last part of their lives. That is my only wish for my mother as well, that she is clean, given liquid if she is thirsty and remains pain free. Take care and I am thinking of you and your dear mother.
LicketyGlitz
Posted: Thursday, September 5, 2019 3:25 PM
Joined: 2/3/2018
Posts: 493


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.



VWwife
Posted: Saturday, September 7, 2019 4:29 AM
Joined: 8/15/2017
Posts: 100


This is so hard. I've been up since 4:30 second guessing myself. Did I miss something I should have treated. Why is she declining so fast? I hate this. She is pretty much at the end now. My brother is here which is a great help. My sister was here through Wednesday but had to return to work. Thursday she had a rally and was more alert than she had been. I suspected, as did the hospice nurse, that this may be a last rally. I had her Facetime with my brother and sister who were out of state for a couple of minutes, although she mostly only watched and listened. Then Thursday night she had a pretty bad night. Trying to get out of bed, taking the gown and sheets off. They medicated her for pain and anxiety and she finally calmed down and dropped off to sleep. My brother and I are meeting with the funeral home tomorrow to pre-plan a few things, and it all seems real now. I haven't really cried much till now and the tears won't stop. I've told her all the things I want to say, repeatedly. Now we just wait. Like I said, this is so hard.
jfkoc
Posted: Saturday, September 7, 2019 11:44 AM
Joined: 12/4/2011
Posts: 17314


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.......


VWwife
Posted: Saturday, September 7, 2019 4:19 PM
Joined: 8/15/2017
Posts: 100


They decided to put a catheter in to lessen the times they had to jostle her to clean her, as that was causing her such pain, even with the morphine. They did send a sample to the lab, but haven't gotten the final results back. In any case, they probably won't treat it since she is no longer able to take her meds by mouth. She is getting what she needs (for pain and anxiety)  sublingually now. That night she got a very restless spell and was able to get hold of the catheter and pull on it so much, they decided to take it out. She has very little output at this point anyway.
agreen24
Posted: Saturday, September 7, 2019 9:16 PM
Joined: 4/20/2016
Posts: 48


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!! 


VWwife
Posted: Monday, September 9, 2019 7:57 PM
Joined: 8/15/2017
Posts: 100


Mom is completely unresponsive now. This morning a tiny movement of her eyebrows when I talked to her, but this evening, nothing. Had a fever of 102 this morning when the hospice nurse visited and she explained it was due to the hypothalamus shutting down rather than an infection. So very hard to watch...and wait. We visited the funeral home yesterday to make some preliminary arrangements. I am just ready for this to be over - for her and for us. I do believe and hope she is in no pain. She is showing no signs of it and seems very peaceful.