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SandwichLady 01-03-2012 07:24 AM

Mom re-broke her other hip and is now on Hospice
Hi, all:

Back in November I posted that my mom had broken her OTHER hip... she broke her right hip in September and then broke her left hip in November. Well last week she fell again and re-broke her left hip and broke her left elbow. Actually, she broke her femur around the place where the "post" of the partial hip replacement was inserted. It was a very bad break.

My mom had let us know that she would not want extraordinary measures several years ago, even before her dementia. And then more recently, she had a moment of clarity and told me that she knew where she was in life and when the end came ("and I think it'll be sooner than you may think") she was OK with it, and to just let her go.

As with the first break on the left hip, I asked the ortho what would happen if we didn't do anything and he said that we needed to do the surgery so that she wouldn't be in excruciating pain. He said that she needed 2 units of blood, but that was "no big deal" in that anyone who had that break would need it to. So I said OK. Well then she was transferred to the MICU. The next day was supposed to be her surgery but the surgeon came in and said that her hematocrit was too low and that she needed 2 more units of blood. So we said OK. At that point she was "basically comatose." (that's what the surgeon told someone the next day.... never put it to me that way at the time). Anyway, after the transfusion, she had an amazing turnaround and was talking and joking (she still had dementia, but she was communicative). So we went forward with the surgery.

But my brother and I, who are both POAs, talked during the surgery and decided that we had probably screwed it up and through our ignorance of what was going on, had disobeyed Mom's wishes. We felt sick about it.

So yesterday, when the hospitalist came by to talk to me about her condition for the surgery for her elbow that is scheduled for Wednesday, it turned out that she received 3 more units of blood during the surgery, making 7 total, but her numbers had gone down again significantly overnight. And she needed more blood. And she needed platelets possibly, and her albumin was down, and this and that.

So I asked him about not doing anything. And he said there's a difference between not prolonging death and not extending life. He said that we were not at the "not prolonging death" stage. So I asked "what if we know that she would not want us to extend her life this way?" and he and I talked more about it and he said he would call in Hospice. I told him that she does not want artificial nutrition or hydration, and he said OK. I asked him what sort of time frame were we looking at, and he said 1 to 2 weeks, but rarely it could last a little longer. He said it was OK to give her whatever food she wanted orally and water, too, if she asked for them.

So the Hospice nurse talked to my brother and me last night and she said that since she had taken some food and water, it would be longer because Mom would go on a week or two after not having any food or water.

The only food she's had was about maybe 3 or 4 ounces of apple sauce to take her oral meds, 4 or 5 small spoonfuls of cream of chicken soup and 2 small spoonfuls of vanilla yogurt, and maybe a couple of ounces of water.

What do y'all think? Who's right... hospitalist or hospice nurse? My stomach hurts... we don't want this to be all protracted for Mom! Her elbow is still broken! but the first time she complained of pain was last night after we moved her off of MICU to another room where she will stay in inpatient hospice for 5 days. She has been denying pain the whole time otherwise!

Lord have mercy. This is so hard. I know she told us her wishes in an attempt to make things easier on us, but, well, it didn't work. This is HARD.


Gabriel 01-03-2012 08:07 AM

Re: Mom re-broke her other hip and is now on Hospice
Bless you!! What a crazy journey you have had with your Mom. Obviously her bones are very brittle to have that many breaks. It is always a hard call to decide what to do and what not to do. What is comfort care and what is proactive live extending. We don't want to prolong dying but sometimes we don't want to prolong living either. I think the question is.... what is comfort. That is what we want for our loved ones... comfort. I think you have to take a cue from Mom. She has told you what she wants. She has not complained of that excruciating pain the doctor predicted. Fixing the break, again, another surgery, another anesthesia, more blood... when does it stop?

The blood and blood work number is telling you something. Obviously there is a problem beyond the break. Hospice can manage any pain that she might have. One thing that many don't get is that dementia can also affect the pain center. Mom broke her hand. Oh we needed to pin the break because of pain, mobility, blah blah blah. Since it was not a major break we opted not to. Mom has NEVER complained of pain. There was no grimace or other nonverbal indication of pain either. It healed with a calcification and she went right on using that hand once the soft cast was off. Then I noticed other things that should hurt but didn't. Obviously this disease has been good to Mom and blocked the pain centers in her brain.

My grandmother had Alzheimer's. Mom agreed to massive antibiotics and other treatments to cure her sepsis. As Mom said... "In my ignorance I didn't know any better!" My grandmother was bed ridden and incoherent for the rest of her life. The doctors "saved" my grandmother but Mom's question was "For What!" She let us know, if we had that choice please let her go. Just because a situation is treatable doesn't mean we are bound to treat it. You have to look at the outcome for Mom. Will it improve the quality of her life and is she in a place that she want to continue.

Personally, that is a choice we all have to make for ourselves and our loved ones. I would and have chosen Hospice. One thing that sticks in my mind is when a nurse told me that doctor do a great job of helping you live but a lousy job of helping you die! They are trained to extend life at all cost.

Hope this helps. I do understand the difficulty of the choices you have to make. Just know there are no wrong choices. Choices you have made were right in the moment with what you knew. Now you have a new decision to make and you will make the one that is right for you in the moment. Go with your gut feeling and what you know Mom wanted. Weigh all the advice you get related to the source. Ask questions and take your time. :) You have done well so far and you will from here out. Know I keep you all in my thoughts and prayers....

Love, deb

Beginning 01-04-2012 03:45 AM

Re: Mom re-broke her other hip and is now on Hospice
One of the hardest parts of being a caregiver is the horrible responsibility of fighting for our loved ones when it's time for them to be released from their suffering. Hopefully hospice will be able to help you and your brother as well as your Mom during the days to come.

It's clear that you're making decisions out of love for your Mom. IMO, the hospital should be making her comfortable at this point (not putting her through more painful procedures that she isn't able to understand to extend life at all costs). You have the blessing of knowing your Mom's wishes, which may also help you get through the next two weeks.


meg1230 01-04-2012 09:57 AM

Re: Mom re-broke her other hip and is now on Hospice
I remember when your mom broke the second hip. My mom broke her hip and my biggest fear was that she would do it again and if so we were prepared to do nothing. Unlike your mom or Deb's, my mom did feel pain. We talked to the head nurse at mom's facility and she told us that if it ever did happen again and we chose to not have it surgically repaired, what would happen is that mom would be in bed and hospice would manage her pain and that the end would not come from not eating or drinking but probably from pneumonia due to laying in a bed all the time. Again, knowing Hospice would manage her comfort, we were ready to let her go. Love her enough to let her go. We knew it is what she would choose for herself. Luckily she never did break that second hip!! She died last July in her bed with us and Hospice by her side. Hospice knows their stuff!

You have certainly been through it with your mom and she is fortunate to have you and your brother. How and whenever the end comes, and whatever decision is made for her, know you were there for her and did the best you could for her. That will give you peace of mind when the time comes.

Love, Meg

debbie g 01-04-2012 05:50 PM

Re: Mom re-broke her other hip and is now on Hospice
i am so sorry you have to go through this

jagsmu 01-05-2012 07:05 AM

Re: Mom re-broke her other hip and is now on Hospice
Sarah how is mom doing? I know you have had some really hard decission to make in the last couple of days and was wondering how you are?? sending strength to you for the coming days.


SandwichLady 01-05-2012 04:36 PM

Re: Mom re-broke her other hip and is now on Hospice
Thank you, everyone, for your replies. This has been hard, but the more time passes, the more we know that we are doing right by mom. We just wish that we'd figured things out BEFORE putting her through that long surgery.

She started to run a fever this morning... not too high, about 100.4. One thing that I don't understand is that her right hand is all swollen. the skin is so tight. Why would that be?

I can't compare it to her left hand because it is in a full-arm splint to support her broken elbow. Poor Mom.

My third brother made it up here today, so now we're all here. I wouldn't be surprised if she was holding on until he could get here.

Dad is very weak these days. He may or may not consciously know about mom (although my brother Joe told him) but we think that they were (are) so much in love and for 55 years, and there is a connection between them that dementia and different living arrangements cannot break. I have a suspicion that we'll be making his arrangements very soon. And then they'll both be free and together with my sister and the rest of our family members.

We just pray for her sake that she passes sooner than later. She's paid her dues. I was about to say that selfishly I'd like her to stay here with us, but that's really not the whole picture because I do not want her here in pain, bedridden, etc. What I really want is her back the way she was pre-dementia. But that isn't possible.

This is so surreal. And when I get into "TCB" mode (taking care of business) I feel OK. I can think about planning the memorial service, etc and I'm ok. But then I think about after that, when life gets back to "normal" and I know how much that's going to hurt. Yuck.

Keysey 01-05-2012 06:08 PM

Re: Mom re-broke her other hip and is now on Hospice
I am new at this and therefore have no advice to give. I just want you to know that I think you are an extraordinary woman and your parents did a great job raising you. You and your family are in my prayers. God bless!

meg1230 01-05-2012 08:58 PM

Re: Mom re-broke her other hip and is now on Hospice
When life gets back to normal, you will find it is a new normal. And, yes, it is going to hurt but not the hurt of seeing the suffering she has endured for so long. I hope, like me, you will find a peace in her death when it comes. A peace knowing it is over for her and a peace in knowing you did the best for her. I wish you strength in the days to come.

Love, Meg

Gabriel 01-05-2012 10:36 PM

Re: Mom re-broke her other hip and is now on Hospice
Sarah, we are much alike and I think the same things you think. I have the same wishes for Mom now and I had the same wishes for Dad. I agree with Meg. Yes, there is pain in missing my Dad but it is nothing like the pain of watching this disease take him away from me bit by bit. When the end was near, I also went into my "taking care of business" mode. It got me though that the end and the new beginning. Then I had Mom to continue caring for. I miss my Dad every single minute of every single day but I also celebrate all the time I had with him and knowing that he is free of this disease. When you have walked with them through this disease, know you have done that is possible to make them as comfortable as possible, it is a blessing and a relief along with the missing them. You will find your new normal and find a way to carry the memories with you in a way the pain is lessened. Know that I am keeping you and your family, along with your Mom and Dad, in my thoughts and prayers.

Love, deb

PS... Mom and Dad had that kind of love for almost 60 years. I know he is waiting for her and she is waiting to be with him. That actually makes me smile :)

SandwichLady 01-20-2012 08:25 AM

Re: Mom re-broke her other hip and is now on Hospice
Mom died January 7th. She was peaceful and comfortable. We had her memorial service last Saturday, and I believe she would have been pleased. I spent a boatload on flowers!

So far, I am sleeping so well! And usually I am a person who can't sleep when I'm worried or upset. But like I told my brother, I think that Dad's situation is simply not dramatic like Mom's has been, and now I don't have to worry about Mom any more, and so I can sleep. He said that we've been in "crisis mode" since March, nonstop, and now we're not anymore.

It's been almost 2 weeks since she died, and I'm really OK! I have my moments of sadness, but mainly I feel relief for Mom that she's no longer suffering. No more physical pain from the broken hips, no more psychological pain from knowing she's having cognitive problems but not knowing why and being frustrated that she can't snap out of it.

In the back of my mind I'm kind of waiting for the other shoe to drop so to speak... like the enormity of it will hit me like a thunderbolt and I'll become incapacitated by it.... I'm scared of that. But so far, I'm doing well.

Thank you all for all of your support. It helps so much to hear from people who know exactly what you're going through. Most of my friends' parents are younger than mine and they don't understand that "going through it" with your grandparents, really means watching your parents go through it with your grandparents. And that's a whole different thing. Y'all are so wonderful to have in my corner!

Dad is really declining. His doc took him off Aricept yesterday. He's on his second 6-week course of an appetite stimulant. There will be no third course. We'll see what happens, but I'm assuming that once he's off the stimulant, he'll go back to eating next to nothing. However, that will put him in line to "check out" on his terms.... 20 years ago he told us all that "nothing good happens after age 85" and that once he hit 85, he was out! So, his
85th birthday is April 11, and it would not surprise me at all if he ended up joining mom before then!

Thanks for everything, y'all!

Love, Sarah

ninamarc 01-20-2012 09:20 AM

Re: Mom re-broke her other hip and is now on Hospice
[QUOTE=SandwichLady;4914085]Mom died January 7th. She was peaceful and comfortable. We had her memorial service last Saturday, and I believe she would have been pleased. I spent a boatload on flowers!

Love, Sarah[/QUOTE]


I am so sorry that your Mom passed away. Please accept my condolences!
May she rest in peace!
I am also sorry that your Dad is sicker too. Hope he will be stable for a while.

Hope you will get better soon.
Please take care of yourself!


Gabriel 01-20-2012 05:37 PM

Re: Mom re-broke her other hip and is now on Hospice
Sarah, when I lost my Dad March of 2010 I was just like you are now. I was ok most of the time. I felt relief more than grief but was sad that he was gone. Yet it was not overwhelming. I have waited for that other shoe to drop and so far it's stayed aloft :) I truly believe that we grieve during this disease to the point that when they finally leave us it is a relief and we are ready to go forward. I truly believe we do the work of grief up front like no other disease so that puts us care givers of loved ones with dementia in a very different place at the end. I have heard so many express just what you describe.. and I have been there now so I know it is true. Don't spend too much energy anticipating what very well may not come!

Dad made the same kinds of comments about being 90. He left me just short of his 90th birthday. The other thing I have seen repeatedly is long time soul mates married for decades many times will follow each other closely to the end. Dad was 9 years older than Mom and Mom was in much better health than Dad... but I have seen a constant and steady decline in her without Dad. Some of that I do attribute to him not being with her even if she doesn't seem to know it consciously.

Emotions are a strange roller coaster :) I am glad you are doing as well as you are and do hope your Dad stabilizes and gives you a respite.

Love, deb

debbie g 01-21-2012 03:33 PM

Re: Mom re-broke her other hip and is now on Hospice
so sorry for your loss. sleep can heal so much.

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