My Mom is in Hospice: fast/fail and eat/rally cycles. Any advice?

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Mom's been in hospice about a month for advanced dementia and inability to stop losing weight. She has these cycles of fasting for a few days and then sleeping all the time and failing. Then, of her own accord she will eat a nice big breakfast or lunch and be perky, alert, and have a pretty good day. This is followed by more fasting, fail, eat, rally, over and over and over.

My social worker from hospice said that mom might be practicing to pass, to get used to it.

I will say that it is 100% true to my mom's personality to refuse to do anything in her life as expected or by the rules. And she has always taken years to make the simplest decision, (10 years to buy a sofa), so it doesn't surprise me that this is how she is going to control her passing. She's had some of the common signs death is near for decades, so the hospice handbook is really not helping me all that much!

It makes preparing for grief impossible. The up & down rollercoaster is exhausting. There is a general trend of decline. The ups are not as far up as previously. I don't know if I should be there or keep on doing what life demands and wait for a serious change. I don't have unlimited time off at work and I certainly can't go without pay for some indefinite time.

Has anybody else been through this? I don't know anybody who has. It's like driving at 100 miles an hour in the dark. No idea when the curve is coming. This is a level of hades and I think it's harder on me than her.

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No question in my MIND that it's harder on you than on her. When a loved one is on their final journey, and we know there's no turning back, it's stressful and heartbreaking for those who will be left behind. And the waiting IS like. Roller coaster ride. I think you've expressed that VERY well.

I advise you to go about your life as best you can. Keeping busy at work is great medicine for the spirit. Don't do a bedside death watch taking lots of time off work. Be there instead to celebrate those GOOD days she's having. They will happen less and less often.

In short, everything you're feeling is natural. And anyone who's gone thru it understands.

Buck up, Bucky. Put on your act-as-if face and try to be mom's bright spot. You'll never regret the enormous effort that will take . . .
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sandwich, it sounds like your mother and you are both really going through it. It's hard to know what will happen and when. I go through this with my mother, but not to such an extreme degree. Sometimes she starts fading away and I think the end is near, but then she gets better. I have a feeling I know what you are going through. All we can do is wait and try to keep our senses about ourselves.

What I wish happened with people is that lived healthy lives until the end, then poof! they would be gone. Unfortunately, it isn't that way, so we wait. Comforting thoughts and hugs coming your way.
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Sandwich, the anguish in your post is very familiar to me, so many times I rushed back to be by my Mom's side thinking this is it, and then she would rally once more. My Mom was suffering from end stage uterine cancer, on hospice for 5 months, and living with my eldest sister in her home. It was the hospice Nurse who noticed a subtle change in her, not us who were caring for her day in day out, but she was able to detect it and she just knew, that it was time to move Mom to the Hospice Hospital, and she told my sister that the end was near, and she felt it would be better for everyone, especially the little children in our family, my sisters Grandchildren whom my sister also babysat in her home, that my Mom Not die there, and that we had done enough and that they would be able to regulate her and do the comfort care in hospital. And she was Absolutely right! Just 2 day's after Mom was inpatient, she slipped into a deep deep sleep, rarely surfacing to any level of awakedness, and I know that some may think that they might be "over sedating" her, but she was in such severe pain, that it truly could not be helped otherwise. The fantastic team of Dr's, Nurses, Social Workers, held a 'roundtable" with all 6 of us kid's, and told us that our Mom was "Actively Dying" truly shutting down, and that her end was very near, and it was. They made sure that she was very comfortable, turning her hourly, swabbing her mouth, and kept a close watch on her, and kept her pain free. Our Mom lived another 6 days, and very peacefully she slipped away with all of us there with her. It was heartbreaking and spiritual and I will cherish those last moments forever. There is no possible way to know for sure, but for us, it was a huge blessing to have her there with such amazing care both before and especially after she passed. The whole team was there for us and gave us such great support in the hours after she died. There was no rush, in fact they told us, and I had never heard of this before, but we were told that in the hour after someone dies, that their brain continues to have activity, and no one knows to what degree, but they are aware. And to continue with your love and goodbyes for a while afterwards. I found this very interesting. I pray for you and your Mom to have a calm and loving passage.
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Is it that you are afraid of her dying while you are not with her? I think it would be nice if we all had the happy movie ending with our loved ones but it rarely goes that way. It's very hard to predict the end of life. You could see her in the morning and she's just great and the end comes when you step out a few minutes later.

Don't beat yourself up. Maintain your life. You've helped and cared and done all that can be expected.
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Enjoy those good days when you can. I'll always remember fondly my Mom's last "golden glow" day when we went out to the garden and she ate pizza with us at the hospice. When things like this go on for months and years you can't practically speaking drop everything to keep a death watch, and though you want to be there if you can, the key words are "if you can." I think your SW is right. And make sure in your own heart you have said the "I love yous" and any other important stuff - I'm sure if she knows anything she knows you have been there and love her and she is cared for. That counts, even if you have to miss the very end whenever it comes. I was there for my mom's passing and very sadly, just missed it for my dad's, but we'd said all the good stuff already so it was not as awful as if we hadn't. He had been in hospital with sepsis before and we did not know the last time was the last time...he had people around him who knew him and cared about him, and he was really not awake or aware once he got that sick...still, I would have wanted to be there and tried driving from LIttle Rock to Pgh PA in the snow to do it, but 15 hours is 15 hours.

Here's a hug and prayer that it will all be OK.
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I just went through a similar thing with my mom this summer. They put her on Hospice and she would have good days then a run of bad days. I thought she would do this for a long time but then a little over a month she start having less good days and then she passed away. My grandma on the other hand lasted five months. What I'm trying to say is that there is no set answer and unfortunately you won't know how long she has. I suggest you spend as much time as you can with her but still allow yourself to work and even have some fun. What is important is the years you had with her and not how long you stay with her at the end. I wore my self ragged with my grandma trying to be with her all the time. With my mom I allowed myself to work and go out. My mom did die when I was not in the house but I know I did my best for her and she knows I love her. Mentally and physically I did much better when I gave myself time away. It is never easy no matter how long it takes. Just do your best and forgive yourself for being human. I wish you and your mom the best.
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Sandwich, sending hugs for you at this difficult time.
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Sandwich, my heart aches for you. I have lost 3 loved ones in the past month. My father had been diagnosed with moderate to severe Alz about 12 years ago and was in what was considered the final stages of Alz for the past 5 years. He did exactly what your mom is doing. I can't tell you how many times we "prepared" ourselves for the inevitable only to have him rally. He was very limited the last 2 years. He was verbal but it was made up words and gibberish so we had no idea what he was thinking or feeling. He could not move around unassisted, but on a few occasions would get up and take a few steps. We had 24 hr care simply to keep him safe. I spent about 80 hours a week being the "watcher" to assist my mom in the event he wanted to go from his bed to the chair. It felt like a death watch most of the time. He was healthy aside from the Alz (with the exception of losing strength in his legs and being extremely frail from the extreme weight loss) so there were many times he would sleep for days. He would either appear to have slipped into a coma or would have terrible fitful days and nights that were filled with hallucinations or terrors. At the same time I was taking care of my brother whose cancers caused him to be in horrific pain, taking him to his chemo, radiation, and dr and hospital visits. If that wasn't enough, my roommate, who was like a sister to me, was diagnosed with terminal, extensive small cell lung cancer that had spread throughout her body. Her treatments were palliative, but included chemo and radiation and constant monitoring, testing, and frequent ER visits. She had no one else and no insurance so her complete caregiving was my responsibility. Here is what I learned from this overwhelming, exhausting experience.
I stopped being a daughter, a sister, and a best friend. I became Caregiver. It totally changed the dynamic of all 3 relationships, not to mention the dynamics of my relationships with everyone else in my life. My mom, my sister, my son, his wife, my grandchildren, and my friends did not have "me" anymore. No one did, especially ME. While I comfort myself in knowing that I did the best I could for each of them, I grieve that I spent the ends of their lives almost detached, focusing on the dying parts instead of the close bonds and joys of living. At the funerals I realized that my recent anticdotes and memories did not reflect the joys and love that I had for each of them. Those memories were spoken by friends who visited or maintained their relationships. While I feel completely blessed to have been there at the final moments, I wish I would have earlier heard the hospice nurse of my dear friend when she said, "It is time for me to help her now. You just love her and be her friend again."
Being with her when she takes her last breath may bring you comfort but I know from both perspectives, having lost 2 other brothers in recent years, that if you have said your good-byes and she knows you love her, her journey will be whole. Some will wait until they are alone to pass. No matter how prepared you think you will be, there is no such ideal. Don't waste whatever time you have left on "death watch". When it is her time, she will be ready, whether you are watching or not. You are in my prayers. Hugs to both of you
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Sandwich, Joan1599, And KaylaFW, said it so well, I have you all in my prayers and thoughts! I don't know all the answers, nobody does, but there must be Something that we all as Caregivers are learning from this journey, I just So appreciate having you all to share with and to comfort one an other as we wade along together! Sincerely, Stacey B
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sandwich, we understand, the uncertainty; it is harder on the family than the patient, I think. My father has 'rallied' for over 21 months now, losing weight, unable to move himself, not eating...then will rally back to stuffing himself, moving around, over and over, until you are praying for a resolution. You are right, preparing for grief seems near impossible. You never know from one hour to the next what you will see, how your family member will be. the family lives in a suspended state, unable to travel, vacation, make plans, be far away should you get yet another phone call. I have heard this called 'the slow death' repeatedly from so many...we grieve while our loved one is still alive, we make plans, we see them rally. We are in a state of grief especially the late stages. I hate this for you, my prayers.
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