Alzheimer's is winning

abc123

Momma is getting worse, quickly. Won't cooperate with taking meds. Has started pocketing food. Can't use a straw. We are giving her liquids with a syringe. Eating less good food, more sweets. Her body is drawing up, her legs are tucked up close to her body very tightly when lying on her back. When on her side they are crossed tightly together at the ankles. She will grab a handful of the bed sheets in her hand with a death grip. I can't get her to relax, even the Ativan isn't helping tonight. Usually a foot massage or leg message will help her to relax. Tonight she did not want me to message her legs. The codeine pain meds have made her constipated and she's extremely uncomfortable because of it. I cut up two Senna tablets and put it in bite size pieces of an ice cream sandwich. I hope she swallowed at least one tablet total. I mixed a half a teaspoon of Metamucil in a small glass of water and gave it to her with a syringe. Has anyone else's LO experienced any of these issues? I'd really appreciate hearing about it. Mom is stage 7 Alz. I'm scared for her. It's not like she hasn't suffered enough already.

Neverends

Hi abc123,  I'm so sorry, I wish I was there to help you. I'm sure she's so uncomfortable  due to constipation, maybe a suppository would help? I don't know much about your mom. Is she on hospice? Is she bedridden?  Pain meds might not be strong enough. I hope she gets  some relief soon. This is so hard,  I'm praying for you and your mom. Others will chime in and offer some guidance. Sending strength  your way.

M1

So sorry abc....hard to witness. I hope you can keep her comfortable.

harshedbuzz

Thanks for checking in abc. I wish things were better for you and your dear mom. 

We did not get to this point, dad's swallowing eased him out before he started with contractures and round-the-clock morphine. But I do know people whose LO's suffered as your mom is; it's why people with LOs headed into end stage pray for heart disease, kidney failure or cancer to take them first. I'm sorry.

Be careful with the syringe. anything other than mom taking voluntary sips sitting upright increases the risk of aspiration at this stage. Does hospice have any ideas about proactively addressing the opiate-induced constipation? This could be very uncomfortable for her as nerves that were formerly padded by bodyfat are more likely to be irritated. When I was on opiates after TKR, my surgeon prescribed Colace before I left the hospital, and I was done out-patient. There's also a prescription medication specifically for opiate-induced constipation which you could ask about. 

MOVANTIK® (naloxegol): Official Patient Website

HB

SusanB-dil

Sorry you and mom are going through this - all of this Hard and heartbreaking!

abc123

Thank you all for your thoughts. it means a lot to me. 

Neverends, yes she is on hospice and bedridden. Stage 7 and declining quickly in the past 5 days.

Buzzed, I will call the nurse asap and ask about the Colace and Movantik. Thank you for that info. 

M1, I think its time for morphine and that scares the heck out of me. But I'll do whatever I can to keep her comfortable. We do have a great hospice nurse. Two of them actually. They were my husbands nurses 9 years ago. 

SusanB, thank you!

abc123

Momma is more comfortable this morning.

live in daughter

We used prune juice when my Mom was on narcotics. This worked well.

When my Mom could no longer use a straw we would spoon liquids into her mouth. This worked well for her. To prevent risk of aspiration we used Thick It which made liquids more of a thicker consistency for ease and safety when swallowing.

Hope this helps.

M1

Abc, if it's time for morphine that will be even more constipating than codeine.  But if her oral intake is really going down, it may all become moot.  Worth asking about Movantik and there's another one called Relistor, but both are more designed for chronic narcotic use, not so much end of life.  The Hospice folks will know all of this.  Hang in there.  Glad she's comfortable, that is absolutely the most important thing....

MN Chickadee

Do the hospice nurses come daily or close to it? If not you might want to tell them of her new condition and maybe they will switch to a more frequent schedule.  A daily visit will help keep oversight on all these different issues. It sounds like she may be close to the end and perhaps her body is beginning the process, hard as it is to come to terms with. No matter what it seems like too soon, not possible, too hard, too unfair. The use of the hospice "comfort pack" of meds may be in order to make these final days or weeks more peaceful for her. A concoction designed to bring the most comfort now, with morphine and anxiety meds and others. When my mother quit taking food the hospice was able to prescribe these meds in a crush-able form that could be mixed with a little water and dropped in her cheek with a syringe. I guess the pain med could be absorbed by the tissue, didn't even have to get swallowed to work. My mother became extremely sensitive to touch when she was transitional. Repositioning her made her very agitated, we had to time this to 15 minutes after the pain meds to make it bearable. Touch had to be very light, even holding her hand at a normal tightness made her wince. Massage may be too much for your mother's sensory inputs right now. I hope you get some rest and are able to make her comfortable soon.

Battlebuddy

My husband does that thing with the legs. I don’t like them to cross because they can get stuck that way so I put a pillow between the ankles so they won’t be able to cross. Also he grips the blankets so tight. I think it is a form of security . It’s been like this for months . So it might not be the end . But food issues are different

abc123

@ live in daughter, I will definitely look into the Thick It. Thank you!

@ battle buddy, I have started putting a small pillow between her ankles. It amazes me how strong she is! It takes me and the sitter to pry her legs apart to place the pillow.

@ Chickadee, our hospice nurse comes once a week, sometimes twice. She will come whenever I call. They sent over suppository’s today which provided fast relief. I’m thinking we have that problem under control for now. We do have a comfort pack. Mom is taking Ativan twice a day, codeine twice a day and Ropinrole at night for restless legs and it has helped a lot. Repositioning does make her agitated and causes pain. I think you are correct about massaging being too much for her at this point. Even though I was gentle, it was clear that she did not enjoy it, she would wince and pull away from me. Today after her pain meds kicked in, I was able to trim and file her toenails. Even though she is having these major declines quickly, her vitals are still very good. Was your mom like that too? Any information you can share is deeply appreciated. This is such a guessing game type situation, it’s heartbreaking as you well know. I hate this disease for all of us. Thank you very much. 

ButterflyWings

abc123, you are doing a great job. I don't have anything to add to the wonderful tips you've received above, except to let you know we are thinking of you and your dear mom. As hard as it is right now, can you imagine if you had not moved her nearer to you when you did?

I helped an elder LO through this transition phase at end of life (not a PWD) in her 100th year and it truly tugs at the heart strings. Please try to rest when you can - I would grab catnaps around the clock, when she did. I too was initially afraid of the morphine, but when her pain began to get away from us, I got over that. Was surprised to see that she hardly seemed to even register taking it. So my fears of using it were unfounded. Lastly, please do ask your hospice nursing team to visit more frequently now. Someone is always on call, so perhaps they can check in on you all daily just for now, to ease your load and your mind, a bit.

You are an amazing caregiver and a daughter any mom would be fortunate to have. Hugs to you.

abc123

Hi ButterflyWings, thank you for sharing your story and knowledge about the morphine. I certainly don't want her to suffer one second more than need be. I think I'm over that hump! Whatever the nurses tell me will be what I do. The two head nurses were the same ones who helped me and my husband in his last weeks 9 years ago. They are like old friends. My husband had two types of aggressive bladder cancer. His pain was extremely intense from the early stages, very different from moms situation. She is 81 and her mom lived to the age of 94 with Alz. I hope and pray that she is spared the final parts of stage 7. Thank you for your kind words. I really don't know what I would do without my alzconnected family!

​fesk

Glad to hear your mother is more comfortable. I do not have any advice but will be keeping you and your mom in my thoughts.

MN Chickadee

Yes abc my mother also had good vitals until about 2 days before she passed. Basically totally normal vitals. The day it became clear she was beginning the dying process was a Monday after growing weaker over the preceding week. On this Monday she was barely taking food and water, sleeping most of the day, not opening eyes or aware of surroundings, clearly uncomfortable and/or in pain. Hospice guessed she had 4-6 weeks left. She was barely taking calories but vitals were totally fine. 2 days later they said a couple weeks max. The next day they said a week max. She died on Friday. She had taken a small amount of Ensure as of Tuesday. On Wednesday her BP and oxygen level tanked and pulse went up and the rattly breathing started and then it happened fast. She never got the mottling or blue coloring they said to expect. Hospice changed the pain meds script so they could be given every two hours to coincide with how often she needed to be re-positioned, have her mouth cleaned/moistened and other tasks she found unpleasant to make them easier on her. If it seems like your mom is uncomfortable when the meds are wearing off you might want to see about increasing the frequency of the ativan and pain med. Every 12 hours may not be sufficient any more. Mom was getting them pretty constantly at the end and it seemed to make her much more comfortable once we switched to this approach. And I too was resistant of the switch to morphine, but watching her in pain and clearly suffering was out of the question. Once we got her on morphine she was way more peaceful. I'm so sorry you are living this. Words do not describe how hard it is to watch and the pain we feel to lose our mother. But just a few weeks out from it I am so glad I was there. I didn't think I could bear it; I was preparing to have regrets from not being able to witness it and being absent. But I was able to force myself there. I got used to the "death rattle" breathing and it wasn't so bad. I sat by her bedside kind of in a trance, the hours somehow passing as if time didn't exist. The hardest part was just the waiting. Waiting and wondering if this was the moment. More waiting. The waiting was excruciating. I was able to spend much time with her in this final week and her last hours and I am glad for it.  Thinking of you.

abc123

Thank you Chickadee. I will speak with hospice Monday morning. I do have the liquid morphine and liquid ativan here at the house. They have showed me how to administer both of them. Mom hardly ate anything today. She drank plenty of water and fruit juice though. She is clearly forgetting how to do things. When we speak to her, she just stares right thru us. I will keep posting updates. Thank you for sharing your mom's journey with us. I'm sure others will also learn from this.

mommyandme (m&m)

I’m so sorry for these struggles.  If your mom is clenching her body up, she may be in pain.  Like others said it may now be the time for morphine.  I might give it a try before Monday and see if you notice an improvement.  

There are the little sponges on a stick to dip in water for LOs to kind of bite down on or suck a bit to moisten their mouths and provide fluids.  

I’m glad your mom is with you and those that support both of you.  

Darn this disease!