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 End of life: some observations on our experience. 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post End of life: some observations on our experience.
My mother died yesterday, after a very short and sharp decline. I'll post that news in the obituary notes, but I also wanted to share some observations that may be helpful to others.

1. She had been eating less and less the last two months, and losing quite a lot of weight, but was still drinking plenty of juice and sometimes milk, and eating a little ice cream. We suspected the end might be approaching, so we resumed hospice care (she had hospice for 6 months last year but got so much better that they withdrew.) These are folks from our own medical school, and I know them and their services. But the medical school is about 20 miles away, and there is major construction on the highway in between. In hindsight, we'd have done better to ask for the local folks, who are also excellent, and 10 minutes away, not an hour in bad traffic.

2. I'd decided to cancel all meetings in Sacramento for the duration, so I was never more than 10 minutes from her. This was a good thing. I stopped to see her Wed morning on way to work and she looked ok, drinking a glass of juice at breakfast. They called me later that morning and she had breathing distress and was not talking at all. By the time I got there, she was visibly very sick. I did not waste any time; called hospice, called my sister in DC who got a plane reservation for the next day, and called my husband and daughter who came over to be with my dad.

3. I had been carrying cell phone, reading material (downloading books from the library, a fantastic convenience), and some healthy snacks (nuts, fruit) everywhere I went. Also good thing, as I did not leave her bedside for the next 48 hours except for short trips to bathroom and to nursing station. My husband kindly brought changes of clothing and some tea to keep me awake.

4. I checked every single medication order and every time meds were given. Good thing, as the standard hospice orders include ativan, which is of course contraindicated in LBD. Several times I had to countermand orders and stop them from giving it. Turns out that the lead hospice person knew it should not have been ordered for LBD - she is very aware of the med lists - but someone newer to LBD care just put standard meds in order and they got ativan included. I spoke to her after and they are now going to do an inservice and go over the med list and establish a better checking procedure at their end. (Helps to be an insider to encourage such things.)

5. Her last seroquel for delusions/anxiety was Wed morning, the last time she could swallow. I really wanted her to continue on seroquel, and figured that the anxiety and distress she was showing might be related to going off it. But seroquel only comes in pill form, at least officially. Unofficially, compounding pharmacies can make up a gel containing powdered seroquel, and it seems to be helpful. But there have been no studies of its absorption from skin or rectal application; a clinical trial to do the pharmacokinetics just started enrolling patients at Mayo Clinic. So the head nurse at the dementia unit helped to track down some topical seroquel from the local compounding pharmacy and tried that, and she responded pretty fast. It would have helped to know about this ahead; maybe it will be helpful to someone else.

6. Although we never got a formal diagnosis, I suspect aspiration pneumonia (she had been having trouble swallowing, and the speed of her decline and the fluid in lungs and then a fever suggest an infectious process.) It can go very fast indeed; it was just 48 hours for her. My sister did make it out from DC in time. Would not have been possible if I had waited a day to see what would happen.

7. It was very peaceful at the end; she took a deep breath, reached her hand out toward - someone? something? - sighed, and left. A couple of friends from the local Threshold Choir had come and sung for her for half an hour. I think that may have eased her mind, if not her breathing. It helped us, too.

8. No one gave us any grief about DNR or other advanced directives. We had all the paperwork and the staff are excellent. It's more complicated at home, and probably very hard in a hospital setting. I was very glad we were where we were. They also have been very kind and supportive to my dad, who is in assisted living.

Just some random thoughts, from a very tired daughter.
Many thanks to all of you for the support and wise advice during this difficult time.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Sun May 11, 2014 12:43 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: End of life: some observations on our experience.
My condolences, Laurel. It sounds as though the end for your mom went as well as such things can go. Even though we know they are in their final days, it is still a shock to the system when our parent is gone. You were a great CG and a help to others with the information you so willingly have shared on the forum. Big hugs to you, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun May 11, 2014 11:02 am

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: End of life: some observations on our experience.
I'm so sorry to hear of your Mom's passing Laurel! It's great that you and your sister could be there with her. Thanks for sharing all that info with everyone here. I think if I'd read that before my Mom passed it might have helped prepare me a little. When it happens it all happens so fast and when it's your first parent to go you're kind of in shock I think. You have some grieving to do now so take some time for yourself and keep your memories close! gail

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Mon May 12, 2014 12:56 am

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: End of life: some observations on our experience.
Laurel, I've followed your caregiving since you came on board. So pleased that everything went as well as it did for your mother's comfort. I offer my condolences and best wishes for you as you go through the next few days and later. Thank you for sharing this intimate and personal experience, it will help others who are living in fear and dread to know that the final days can be peaceful.

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Mon May 12, 2014 3:22 am

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: End of life: some observations on our experience.
First, thank you all so much for kind words!
A couple more thoughts -

My sister would win, hands down, for World's Most Organized Person. She had prepared a complete list of all the things to do in the event of death, including a list of everyone to be notified and what would be needed. I mean this was COMPLETE - she even knew how many death certificates we'd need. There are resources online and in books that give the general information, but she also had listed everything including their banks and phone numbers, their SSN, and all the places to call. It may seem tough to go through this preparation up front but boy howdy, has it made things easier. She is doing a lot of the calls and letters, I've done some of the ones that are local, and I'll finish up after she goes home tomorrow. It has spared my dad a lot, too.

Second thought: everyone who told me I'd need time off is right. I had even just finished reading a review article in the medical literature on the impact of end-of-life for family caregivers of dementia patients (thinking of my dad, of course), with an interesting summary of the commonalities and differences for spouse and child caregivers, and for in-home and institutionalized patients. Did not think that this would apply to me. Ha. Yes, I need time off. Way more than I anticipated. I feel pretty much drained at this point.

I hope these thoughts will help people for whom this difficult time still lies ahead. You will be in my thoughts and prayers! And I will try to look in on the forum, too, as I am so grateful to all of you for your wise words, caring example, and warm support during these last few years.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Mon May 12, 2014 3:56 pm
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