mama's in hospice center

[treemom2]

My poor mama. She has had dementia for several years, but could still hold conversations and have a good quality of life. In May she fell and broke her shoulder. She was put in the hospital where she was given several potent cocktails of meds (haldol, daulidid, ativan, etc. . .). . .everytime she cried out or was confused she was given another cocktail. She lost what lucidity she had. She was placed in a nursing home where the cna forgot to place her fall risk devices and she fell and broke her hip. Back to the hospital. . .surgery. . .then to another nursing home. Last week she became completely nonresponsive and it was discovered that she had several bloodclots in her legs and massive bleeding in the brain. She was moved into a hospice center. I flew home and have been here at the center with her since. She is not able to talk at all. She does groan and cry in pain all night long even with the pain meds. She can lift an eyebrow when people talk to her so we know she can hear us and somewhat respond. . .otherwise I might talk with the doc about just keeping her asleep until she goes. Today we decided to stop her feedings (she has a g-tube). This is all soooo hard. Funny thing is. . .she always talked about wanting us to kill her if she ever had to go into a nursing home and, yet, here we are. I am really rethinking my view of euthanasia after watching her go through this. . .it really affects you to see your mama crying in pain and knowing she never ever wanted to go through anything like this. UGH!! It's so hard. . .anyway, I'm just feeling pretty low right now and could use some support. I guess I didn't mention that I had to leave my family in Japan and now my DS is sick with a pretty nasty throat infection, I'm living on 4 hours of sleep a day (I have no car and am dropped here at the hospice by my sister and then taken to a hotel for 4 hours a day to sleep then brought back here. . .I do the night shift from about 7pm-2 or 3pm depending on when my sister finally comes to the hospice or when the doc comes in), and I don't think I've eaten any "food" since I've gotten here (I don't consider McD's food and that's all I've been able to get since flying in since I'm in my sister's hands and she's all for fast food--blech). WAHhhhhh

[purplegirl]

omgoodness. I am sorry for all that you are having to endure. I pray that your mom's journey is peaceful and painless. Please remember to take care of yourself. That has to be so difficult on many levels

[meemee]

oh barbara i am so sorry to hear this. your life is in such a turmoil with everything - food and a sick son.

hopefully this wont last v. long. maybe a week. at the most 10 days. if even that.

our adopted gma had alzheimers for which she had to be isntitutionalised. and they werent able to avoid a fall. seems a pretty common thing with dementia and alz.

i wanted to share with you my xfil's story. he had signed a do not resuscitate order many years ago. he had left explicit request that he didnt want to be on life support. and then he was dying. refused to go on hospice. living at home with me there. so he stops eating and drinking. of course he gets dehydrated and starts 'seeing' people. so his nurse asks him if he wants to go to the hospital for an IV drip. and he says yes. the last few days he kept asking for food but wouldnt eat it. he would ask for all kinds of liquid but would not drink.

so dont feel guilty about ur mom and how she didnt want to be. when they come close to death v. few want to die. or take any actions to die. even my dad didnt want to die.

instead just be with ur mother. hopefully her body will get used to the morphine (hopefully she IS getting morphine for pain) and she wont feel the pain so much. if you can fit get into bed with her and hold her. it would bring peace to her and you. and yes the morphine would mostly keep her asleep.

do you have a decent chair to sit on. by decent i mean comfortable. and read or do something relaxing. please, please take care of ur self the best you can. grief along with lack of rest can take a huge wacking out of you causing medical issues for you. how about the hospital cafeteria? at lunch time they might have at least a freshly made sandwich or salad. heck this is a hospice facility. there must be something out there for family. including a bed for you.

big hugs.

[mamajama]

I'm so sorry you are dealing with such a difficult situation.

Please do ask your hospice nurses for some comfort measures for yourself. You do deserve whatever is available to you as well. Could you pop out in a cab for a few minutes and grab some fruit and other fresh items for yourself? Maybe some juice etc. that you could keep in a fridge there? Perhaps your sister can drop you by a grocery store when you're going back and forth from hospital.

Remember that your mom probably isn't in pain but feeling restless on some level perhaps or experiencing 'lucid' dreams. Often it can seem like people are in pain when they're moving through their last days but it is often pre-death restlessness. This is especially true for people with dementia from my understanding.

I have found that reading poetry aloud can bring a great sense of peace to both the caregiver and the dying person. Is there poetry you can think of that you mother might like or that you like?

Again I'm really sorry and thinking of you and your mama tonight. :

[the2amigos]

Just about all people go through terminal restlessness prior to death. This is often exhibited in moaning, moving arms and head. It is difficult to distinguish from pain. We (I'm a hospice nurse) usually default on the side of treating physical pain as well as the restlessness.

Stopping the tube feeding will likely help. Our bodies are meant to die "dehydrated and starved" for lack of better words. Are they able to medicate her more?

And I agree with taking care of yourself. She knows you're there, even sitting in a chair reading a book out loud or listening to soothing music is so good for your both.

Many hugs and peace to you and your family.

[siddie]

God Bless you Barbara. You are doing your best to take care of your Mom, just try to remember to take care of yourself too so you can continue to care for her. I remember being so exhausted in the hospital with my Mom when she had pneumonia. Is there a cot you can lie down on near your Mom? Maybe go for a walk to a nearby restaurant and just eat a salad and read the paper for a break? Ask your sis if she doesn't mind getting you a Quizno's salad instead of McD's? Just remember that you wil get through this and go home to your children and husband knowing you were ther for your Mom. Sending you prayers and hugs!

[Susana]

HI Barbara
I have to hug you here and let you know you have my support as I know exactly what you are going through. My dad had dementia too and I sat with him in hospice(for weeks) til he passed away in March this year.
It is gut-wrenching, I know. Believe me when I tell you it will be all right. You are a wonderful person to come to be with her now.
you have to take care of yourself and you will. for your kid's sake, you will. McD's is better than nothing for the time being, I guess. I survived on coffee and cigarettes (have since kicked that habit) yuck, huh.

I am so sorry mama that this is happening.

[laoxinat]

Hi Barbara,

First a big hug. I would be demanding she gets better pain relief. A case can be made for malpractice if the docs do not provide adequate pain relief, and there are criteria for assessing pain, even in someone who is comatose/unresponsive. I am so sorry you are dealing with this. There are many resources to help you advocate for your mama. Check aand see if the hospice or hospital it is associated with has a patient advocare. They can usually help. Pain can always be treated. Always. Also, check out Ira Byock online. He is a hospice doc who has writtn several books. Hope this helps, mama.

[fruitful womb]

My 104yr old grandmother died on the 8th. It seemed like a three day labor to let go of life. Although she was dying two weeks prior to her passing. It became very real these last few days. She was in the hospital and still laboring so we said, "bring her home". Its what she wanted. She wanted so badly to come home.

Hospice was here. She was never alone. We were at her side till her last breath. It was Cheyne Stoking respiration. I saw her spirit leave her body when the RN pronounced her at 9:04 a.m. I'll never forget that moment. It was truly amazing.

I'm so sorry for what you're going through. Do you think you could transfer her home so she can pass peacefully in an environment she is most familiar with?

I tell ya, the hospice nurses were wonderful. They made my grandmother as comfortable as possible. They answered all our questions. They were so supportive. Our entire family worked as a team to stay at her side.

Its a blessing to have that chance to say goodbye. I share my story in hopes it helps you. The one thing I learned was, the beginning of life is much like the end of life. We labor to bring forth life and we labor to let go of life.

[tug]

i agree with all of the suggestions about home if possible and hospice no matter what.

my dad died in march, after having dementia for several years. he was also pretty lucid until the end. it does sound like she may be in the terminal restlessness stage. i did want to add two things - have your sis bring you fruit cups and salad even if they're from a fast food place. you'll feel a bit better. any fruit is something and you do need to take care of yourself as well. also, be there when you can. you can't be there every minute and she may die alone. that is okay as well. my dad died when i was sleeping upstairs with my kids for the first night in a while and my dh was with next to him but not watching his last breath. i felt guilty for a long time but in the end, you do the best you can, and then you let it be.

i'm sorry you're going through this. my heart goes out to you, especially being so far from your family and with a sick child too.

[purplegirl]

Wondering how you are doing

[treemom2]

update. . .

Thank you all for your words of support and advice. I continued to stay with my mama in the hospice center everynight and most of everyday until she passed on the 8th. We had a memorial service on Sunday and it was pretty nice although a little too religious for my mom (the owner of the funeral home did the service). I've wanted to do some Japanese traditional things with the body (get her dressed myself and decorate around her with fresh flowers) before she is cremated, but I am supposed to leave tomorrow and the funeral home still doesn't have the paperwork. I guess they sent the paperwork to the wrong hospice:. I did find the paperwork today, had it signed, but now we have to wait for the medical examiner. . .I'm so hoping they get it early so I can do the things I really want to do. I'm still pretty numb, I guess sitting with her everynight in hospice, watching her moan in pain, really made me more thankful for her death than upset by it. According to my sister (a nurse) she had a "good death" since she went in her sleep and didn't seem in any pain that day. My brother seems to be having the hardest time with everything, I guess that's because he wasn't here to see everything that was happening. I'm so worried about my dad. He and I are going to the city tomorrow to stay in a hotel together since I fly out so early in the morning Friday. I hope he will be okay. He lives in a retirement community with a golf course, so I'm hoping he gets back on the course soon. He said he wants to play golf, play bingo at night, and maybe volunteer at the red cross as well. He's going to one of my brother's homes for Thanksgiving in CA and another brother's home for Christmas in DC. I would love for him to come to Japan, but I'm worried about the long flights/layovers (takes like 24 hours with everything). He did say he wants to come though and I would totally love it!!!!

[treemom2]

Originally Posted by Susana

I survived on coffee and cigarettes (have since kicked that habit) yuck, huh.

I am so sorry mama that this is happening.

yeh, I'm an ex-smoker in a family of smokers. . .I've somewhat started again as well and I think all I had to drink was coffee for days. . .Guess I'll kick the habit again once I get back home

[mamajama]

I'm so sorry for your loss. I'm glad your mama has found peace now. You are an amazing person for being there for her as you have been. I do hope your dad can visit you in Japan!! Holding you all in my heart.

[Susana]

Barbara, I am so sorry to hear about your mom, and totally understand how you feel about death taking away the pain. I am currently watching my mom go through the same. It is heartbreaking.

your dad seems to have the right attitude with wanting to get on the course and doing some volunteer work. Good for him.

As for the smoking, what a hard habit to break after doing it as a stress reliever in a highly stressful situation. I'll be honest, I still sneak one in now and then.

Best wishes to you, and here's a

[purplegirl]

I'm so sorry to hear of your mom's passing. I know life is difficult right now but I pray that peace will find you soon.