My mom is 74 and has had Parkison's for quite a few years. In October her blood pressure dropped and it's been a gradual decline since then. She is now an in- home Hospice patient. She rarely opens her eyes, will not drink or eat (has been 4 days now) has a fever one day and is ok the next, her breathing changes, she has congestion, she has bed sores that break my heart (God knows we change her position, change her diaper, have an air mattress provided by Hospice, but we are still racked with guilt) My mom is dying, and the waiting is killing us. She seems "better" one day and the next day I'm afraid to leave her side. We wait. I treasure every single moment with her! I treasure changing her diaper, washing her face, putting lotion on her face, putting moisture lotion on her lips. I take pride in the love and care we give her and I hope she knows how sweet smelling and pretty we keep her.

One day I'm ready for my mom to rest, the next I feel selfish and want my mom and I feel comforted by knowing I can at least go and see her. Hospice has provided us with information that lets us know when the end is near and she is displaying most of the signs. (her hands and feet are usually warm, so this is the ONLY thing that gives me hope she has more time) It's like I just want to know WHEN. The nurse says her vital signs are stable. How can she be so sick and her vital signs stable? I don't understand dying, I don't know how her body can be alive.

How long can a person go without eating or drinking? How can her diapers be SO wet when she isn't drinking anything? The whole process is so painful.

I just needed to write and I guess I need to hear from anyone who has witnessed HOW a person dies. How do you know, how do you really know?

Hi Spazzie

First off I want to say my thoughts are you during this difficult time. I am a hospice caregiver and work at a hospice home. I have been doing this for 5 years now and love every moment of it as hard as it gets sometimes, I just know it is the place where god wants me to be.

In answering your questions on how do you know when the time is near. Well one can never really know but we can go by the symptoms we see in the patient. The symtoms you have described I would say your mom is pretty near heavens door.. cherrish those moments you have with her dearly.. I know it is not easy and I am sure your mom knows how caring and loving you are to her during this time. You asked a question of how can she have such a wet diaper, when not taking much in. Her body has alot of fluid and is putting out what is left in her.

I am not sure if you were given a little booklet by the hospice team but if not you can ask for it, it might better help you understand the dying process.
It is called " Gone From My Sight" see if they have it and if not I can see about getting you a copy.

you can email me or reply to me in here, I would be happy to answer any more questions you may have.

God Bless

:angel:

Lucky Lisa, thank you for your kind, honest and direct reply. You sorta reconfirmed what I already know. My mind drifts toward denail at times when my heart is saying something else. I know it's important to face things, but letting go of any hope is difficult. It' hurts that I'm building such sad memories of my mom when I want so much to see/remember her as she was....even 6 months ago. She has changed so much...is so tiny and fragile.

Yes, we do have the booklet "Gone from my sight" and I've read it over and over. Thank you for the offer and sending me one!!! It's such a simple book that gives so much important information for anyone who has a love one dying. It's at least gives us something to go by, but she has displayed many of the symptons, some for months. Going by the book I understand her final moments will be like a "fish out of water" and I can only hope that mom doesn't suffer....I know I will want to just hold her tight and not let her go (I have a feeling my dad will win that special place) They will be married 56 years in February. :( I visualize her seeing beaufiful white lights and the faces of her parents. My husband died quite young and I hope he's there too......he loved her like a mother!! I want to be with her when she goes and I'm so afraid I want be. She has been so brave duirng all of this and I can ony pray she will be brave when she dies and have no fear.

So many emotions and thoughts run through my head.

God bless you for the work you do. I have even thought of becoming involved with Hospice when the time is right for me....even if it's in a small way. What a impact everyone makes in the lives of those losing someone that is loved so dearly. I feel as if we are making friends and there's a couple we would like to adopt. :)

Thank you for your reply......it really does help to know there are others out there that understand and care.

...you can email me or reply to me in here...


[ please carefully review the posting rules - no emails ]

When my great grandmother was in hospice, my mom and aunt stayed with her and I think what helped is that we [all children, grandchildren, etc.] got to see her. IT was VERY VERY scary. I think what made is easiest though for her was that we all had been telling her there that is was OK to go, to be with her first husband, that we'd be fine, she wouldn't be in pain anymore, etc. I think by morning, she was on a VERY high amount of morphine, and her hands and feet were turning blue. Personally, I would think if I was laying on that bed dying somebody telling me its ok to go, etc that would make me feel alot better. Hang in there!! I know its not easy, it can't be shes your mom. As much as my mom and I don't get along I would still be devestated if something happened to her. I would think, that just knowing people care and the people I love most telling me its ok to go, etc would make it so much easier. My great grandma was a BIG fighter. She survived a really bad car accident that she wasn't expected to live from, but we got 4 more wonderful years with her, but throughout that time she has congestive heart failure. Just hang in there!

Mom seemed better today. She had a rosey color to her face and she looked like she was resting better. Her face looked relaxed. She is still not eating or drinking....but her diaper was SO wet last night and again this morning. scares me that she's losing all her body fluids.....dehydration will come next, right? Her hands are still warm. That's the first part of her I grab when I go there.....just to make sure her hands aren't turning cool/cold.

Fallen, I do whisper in her ear sometimes that it's OK to rest.......I can't bring myself to say the words die to her. I just tell her that I"m so proud of her, that's she's been so brave......and that it's ok if she wants to rest. I guess I should tell her that we will be ok when she goes.........whew, I am so afraid of breaking down if I did that. I'm careful not to let her hear me cry.

Thank you all for your replies. We continue to wait.

Well, my mom was really funny, she was YELLing "grandma just go to sleep", etc. Is your mom able to talk or respond? I guess we wont know until we are in that position what helps, but my mom just talked to her, reflected on old good times, then she'd get fustrated and start yelling, "grandma go be with *first husband I forget his name*", "quit making yourself stay in pain longer." I think as much as we would like somebody to stay here on earth with us, we have to let go in order for our loved one to let go and be in peace. KWIM?

I read my original post and at the time I was wondering how a person really knew that death was near. I know now....my mom passed away Saturday night, January 15th. When the time comes and gets close, you really do sense a change, a difference.

The hospice social worker had come to my parents house on Friday to prepare us....she said she didn't think Mom would last through the weekend and for us to stay close to her. She made sure we knew what to do when she died and what the process would be afterwards. I stayed with them and mom had a rough night Friday...very fast breathing and she started running a fever. The upper body was hot and her legs and lower body were cool. All my kids (her grandchildren) came and more of the neighbors and family stopped in. They must have sensed the need to come as we had only told the family that mom wouldn't be here much longer.

I had never been with anyone who has died before. It breaks my heart that it was my mother but I am so glad we were with her when she died...holding her hand and smothering her with kisses. She didn't seem to want to let go. She would stop breathing and several seconds later start again. I think she did this around 6 times. The final time she stopped I actually was waiting for it to start again.....but it didn't. I can only hope she knew we were with her...

my sweet mama is being buried today at 2:00. Life will not be the same without her, it will take some adjusting for sure. I thank those of you who replied to my post as it really did help and make a difference. Maybe I will stick around and be able to offer support to others when my heart isn't so heavy.

Oh Spazzie...I'm so sorry. I'm in tears after having read all the posts; especially the last one. I just can't find words...

May God comfort you during this difficult time. My prayers are with you.

Thank you Gloomy daisy....just having your thoughtful and caring reply helped. I wish I had found this board earlier.

I've been thinking about you, Spazzie, and keeping you in my prayers. How are you doing?

Spazzie,

I'm SO sorry for your pain. My father too has Parkinsons and suffers some of the same things ie bed sores etc.

I live abroad so only get to see him once a year so you are lucky to see your mom often.

I have no advice or words of wisdom just wanted you to know that there are people out there who feel your pain.

I appreciate your thoughtful replies and concern.

I think I'm doing ok. I allow myself to cry when I feel sad or something triggers a memory. My sleep is still a bit effected, but hopefully in time that will leval out. I went back to work yesterday and in some ways, it helped.

I still feel lost without my mom. Our daily routine revolved around my sweet mama and now it's over with. I use to go in the mornings before work (5:30) to help dad change her and I'd wash her face and comb her hair. The aid came around 9:30 and I would go back after work (2:30) to change her again. This was when Dad could run errands and such. I'd stay until 5 or so. I'd go back at 9:00 or 9:30 to change her for the night. I live so close to them and that was a blessing!! No matter how bad a day I had had, my mom's sweet face always made me feel better. She was still my mama!!

I miss my mom's sweet face. When she died she had my tears on her cheeks. Something about that makes me feel close to her.

My mom is 74 and has had Parkison's for quite a few years. In October her blood pressure dropped and it's been a gradual decline since then. She is now an in- home Hospice patient. She rarely opens her eyes, will not drink or eat (has been 4 days now) has a fever one day and is ok the next, her breathing changes, she has congestion, she has bed sores that break my heart (God knows we change her position, change her diaper, have an air mattress provided by Hospice, but we are still racked with guilt) My mom is dying, and the waiting is killing us. She seems "better" one day and the next day I'm afraid to leave her side. We wait. I treasure every single moment with her! I treasure changing her diaper, washing her face, putting lotion on her face, putting moisture lotion on her lips. I take pride in the love and care we give her and I hope she knows how sweet smelling and pretty we keep her.

One day I'm ready for my mom to rest, the next I feel selfish and want my mom and I feel comforted by knowing I can at least go and see her. Hospice has provided us with information that lets us know when the end is near and she is displaying most of the signs. (her hands and feet are usually warm, so this is the ONLY thing that gives me hope she has more time) It's like I just want to know WHEN. The nurse says her vital signs are stable. How can she be so sick and her vital signs stable? I don't understand dying, I don't know how her body can be alive.

How long can a person go without eating or drinking? How can her diapers be SO wet when she isn't drinking anything? The whole process is so painful.

I just needed to write and I guess I need to hear from anyone who has witnessed HOW a person dies. How do you know, how do you really know?


I am so sorry to hear about your mom. I just lost my daddy Saturday. He was sick for a long time. He was in and out of the hospital. They were fixing to put him on hospice. There was never anything the hospital could do but drain fluid, etc. then send him back home. It was much harder on him I'm sure, to know he was going to die, and live each day with that. The only thing we could really do was to try to go on with our lives. It was hard. Only God knows when the time is right to take us home. Just trust him. Maybe talk and pray to God. He can help if you trust in him. Again, so sorry to hear about your mom. My thoughts are with you.

Hi :wave:

I'm sorry that you are going through this pain. I know there isn't much I can say to make you feel better. I do however have a suggestion for you. You mentioned that it is hard for you cause you are forming so many bad memories of your mom in the last 6months.

Try getting out some old pictures,
This may help you to remember good times with her, and see the good times in her life. All the great things she did, all the smiles...all the love that was in her life....reminise about that stuff...concentrate on it. Try and take your mind off the present...death and dying..as hard as it may be :bouncing:

Your mom is with GOD and close to the angels in Heaven :angel: but she will always be close to you! :) She loves you very much and she knows you are there!

God bless you Spazzie and may your mother watch over you and your children for the years to come. As a mother, she is much happier being able to watch over her family now.

I'm glad you're doing o.k, Spazzie. I just have to tell you that once again, your post has moved me to tears. I am always so touched by your posts. The way you speak of your Mom...It is so very evident how much you loved her. What a sweet, special, beautiful relationship you had with your Mother. She must have been so proud and undoubtedly blessed to have a daughter like you. You were true blessings to one another!

You remain in my prayers,

~Daisy~

spazzie,

when my mum died, a hospice worker gave me a copy of "the orphaned adult" by alexander levy ... when i could finally bear to look at it, the book explained all the feelings of alone, abandonment, and despair, and why even as adults, we are orphaned ... it helped me very much to understand the way i felt ...

and yes, hospice workers are to be blessed ...

jb

Hello, I lost my mother this past Tuesday ( 5 days ago). Although she did not have
the same disease as your mom, she did have a destructive, incurable disease, cancer. For nearly 3 weeks she could not eat anything except a few small spoonful of custard. She completely quit drinking water approx. 3 days prior to her death. However just like is mentioned in one of your returned messages, she could hang on for months.

I can only tell you, I am here to listen and let you know I have experienced what you are going through and will try to share advice in a caring manner.

Spazzie, I too understand your pain and am thinking of you and your family. I lost my dad on 7/5 from Adult Failure to Thrive. When the doctor told him "colon cancer", he decided he was not going to fight anymore. So, he stopped eating. Eventually, he could not eat without getting violently sick. He weighed 100 lb the last time he was weight. It became too painfull. I could not imagine a grown man so frail and thin. He looked me in the eyes on 2 different occassions to "please, kil men.."......

I can only offer my sympathy here. Words are too few and too distant to verse anything that would suffice, since this is personal to your world.