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Old 01-21-2009, 06:42 AM   #1
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Saga is slowly and painfully coming to a close, but I need help or answers

to all

Mother fell at 5 in the morning Saturday morning and really conked her head and split skin at eyebrow on left side.

ambulance rushed her to closest hospital, she was stitched (6 of them) and then they packed her up and transferred her to the central hospital that her doctors are located at with their offices.

She's been in a room since Saturday. With IV, (glucose).
First day she was sleeping all day because of sedation to stitch and CAT scan her. Second day (late Saturday/early Sunday night) Mom started coming around and was combative so they restrained her with a belly band and sedated her again. She slept most of that day and it was painful for Sister because they also came in with her meds and Sister feels that they wouldn't re-institute all the meds Mom was on (fosamax, lipatore, Aricept and Namenda, etc), if they didn't want her to take it. BUT she wanted Mother alert and awake as well. They crushed up all the pills and put it in apple sauce and sister fed her the apple sauce and was lucky she took it.

Monday she was given food trays all day, sister was found trying to feed her which upset nurse so they asked a Social Worker to speak with Siser. The social worker came in and told sister that she can't feed a sleeping patient and also talked with her about other things such as Mom's bruising; but Mom fell quite a number of times this week that Sister associated with her attempts to get out of bed when she was under the Ativan sedative. One .05mg pill not enough to keep Mom down for a any length of time but two .05's wasn't enough to do the trick either although it made her unsteady on her feet and that is why she was falling. But Sister wasn't giving it to her all the time either and now feels guilty when these things happened and she did give it to her.

Anyway. They didn't sedate her again because all day Tuesday but not taking in food or liquid (except through IV) they found her very lethargic. So because she's no longer combative, she was not sedated. However . . . She won't open her eyes (although she did for mili-seconds on Sunday night) and she looks like she's in pain (maybe from head trauma?) She's cathetered so she doesn't need to get out of bed for any reason and the restraint was off because she was so lethargic.

Sister thought she was still medicated with sedative because of how she was constantly 'sleeping' and was annoyed because they once again brought food tray up but they attempt to feed her but if she doesn't recognize it, they stop at that point. And because of no food going in, any medicine isn't being given to her either and that upsets my Sister very, very much.

I'm trying to figure out if she's either 'out of it' due to more loss through dementia or not truly 100% conscious due to head injury.

Last nights hospital visit, brought me to tears for the entire time. I was crying because she's making these sounds and I don't know if she's in pain! She can't tell us whether she wants head up or down, legs up or down and she keeps pulling her legs to an odd angle in bed and then makes the moaning sounds.

Sister wants her to be given Namenda thinking that she'll wake up more and be more alert than she is. Thankfully my Sister is also accepting that it may be less than what she was when she was home previously.

I told sister the worse thing I had to convey -- I told her to please ask the doctor and if the IV was what is keeping her alive, let it go. I know what that means and we have Mom's living Will saying so medical intervention such as respirators, feeding tubes, etc. Its the hardest thing and the other hard thing is no one can tell us whether she has hours, days, weeks or months, yet they tell us to start searching around for the nursing homes.

This is far worse than my Dad dying suddenly after an operation that was a success, or my father-in-law's heart giving out after years of success with by-pass operations or even my husband dying so suddenly right in front of my face after being released from a hospital 2 hours before.

I know I need to keep going to the hospital, etc. But I find when I do go, I'm now crying all the time and then I don't want to eat and what I do eat, I'm throwing up or releasing in other ways. I have to work as well and my kids don't want to go -- and I'm not forcing it -- as far as they're concerned she passed away early Saturday morning. They both are grieving this in their own way but I also think neither wants to see her in this last condition because it will always be a vision in their minds.

I guess we'll have to see what the doctor tells Sister but also not sure Sister is up to asking the tough questions or even hearing the most difficult of answers. Everyone who has someone who loves them like my Sister loves my mother is truly very lucky and special in God's eyes.

Last edited by caringsister54; 01-21-2009 at 06:55 AM.

 
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Old 01-21-2009, 09:01 AM   #2
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Dearest Diane-

This sounds like when my mother passed a year ago. Mom didn't have an IV because she was in the nursing home, but it started in a similar way. She went to sleep on Saturday evening and they couldn't wake her on Sunday. She would moan and stir, but that was about it. She could hear us and she would respond to stimuli but she wouldn't open her eyes to look at us at all.

Mom didn't take in any fluids except what we wiped her mouth with and her lips. They gave her liquid pain meds to make sure that she wasn't suffering at all. Palative care.

We got there on Tuesday. Mom heard us and knew that we were there. She squeezed my hand, but she didn't look at us or open her eyes. we talked with her non stop all day Tuesday and Wednesday. I sang her favorite hymns and she sort of hummed along and raised her eyebrows at her favorite parts, so I know that she heard me and knew the hymns.

I even got really angry at her and told her that she was a stubborn Swede and that there was no reason for her to hang on, we had said our good byes and we were at peace and it was time for her to join daddy. She just snorted and pulled her hand away and turned her head away - so I know she heard me.

We finally figured out that Mamma had always said that not enough people there said please and thank you and she was waiting for that. So we said our "thank yous" to her. Then I said please let go Mamma and go to God and Daddy. Your angels are waiting for you. Waiting to take you home. That was what she was waiting for. In less than 10 minutes I watched Mamma pass.Her life just drained from her feet right up and out.

I don't think giving Mother Nameda would be of any use what so ever at this point. At this point I think it is the IV that is keeping her alive. That is what is keeping her hydrated and giving her fluids so that she has something inside of her.

Have they- and I hate to say it this way - put mother on death watch? Or are they saying she will come around? What are they telling you? What is their prognosis? Do they thing she will be upright again?

How is sister holding up?I think that you are right that she may not have the intestinal fortitude to ask the hard questions that need to be asked. I know how awful it is to ask-I've had to do it. Perhaps you need to do it for Sister at this point...and I know how hard it is going to be for you to do it also.
Diane, this sucks, no matter what way you look at it. Can you steel yourself to do it for the two of you? I am worried about you also. I have lost both of my parents within a five week span so I know how hard it is to be reeling from one death after another. You are going to have to lock away all the other memories and just try to get through this one crisis. Focus on one session at the hospital at a time. Don't look back, just focus on this one session. Blinders in place..If you can work on that it won't be better, but it won't be so overwhelming.

You are in my prayers and thoughts and I am wrapping you in my arms and a big towel that we are all hanging on to...


 
Old 01-21-2009, 09:07 AM   #3
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

You always have the right words to say to everyone. I wish I could do the same to you. Im not good with words and just want to say I am sorry.

My grandfather hung on until someone said Go dad we will take care of mom. Dont worry. After they said that a little tear came from his eye and he smiled and passed.

I hate death. For my own selfishness. I know they go in a much better place than on Earth. But it still hurts.

 
Old 01-21-2009, 10:47 AM   #4
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane, I'm so sorry that it's come to this. I think your dear sister is in denial and needs a lot of love and understanding right now. I'm sure she's blaming herself and already missing the mom she's been caring for so faithfully for so long, albeit not always quite how would be the best, as you've shown us.

I hope you can encourage her to just sit with mom and talk to her. The sense of hearing if often present even when we think it isn't. Whether mom understands what's being said or not really doesn't matter that much. She may just be aware of sister's presence by hearing her voice come through every now and then. This is a time of waiting and watching and patiently just being present. If sister can get it into her heart that this is a new phase and mom's care needs to be adjusted, at least temporarily, maybe she'll be able to just keep mom company and let go of trying to feed her. I imagine she feels rather panicked inside!

This is a time to talk about good memories with sister. It'll be good for both of you. It's so hard to watch someone you love being so ill. I wish you both the best as you struggle through this.

Love, Emily

 
Old 01-21-2009, 11:44 AM   #5
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

called nurses station this morning to ask for doctor's phone #.
Then called Sister at home and said she didn't have to wait for visiting hours to start she can go whenever she wants. She's the type that if the sign says 'no entry until 10:00" she'd wait until 10:05 just to make sure. She never fights the system, but makes nasty comments about it to the actual person who represents the system but doesn't fight it in anyway.

Well, she said she wasn't going to go over and try to catch doctor, she was going to go to church and see if and when the priest was going to come visit. I think she also wanted to ask him what she should do. Apparently the priest asked her what is the doctor saying, sister must have alluded to the fact that he hasn't said anything -- truly he hasn't!!!! -- he doesn't call her or anything. He called once in these 4 days so far only to ask on Monday morning if my mother was the way she was when she was home and sister said no, she'd walk around, she'd watch TV with me, etc.

Ok now further update of today. I called Mom's room and Sister was there. When I asked how everything was she was like "Mommy's awake!" she actually opened her eyes. and I can hear her talking to Mom saying "your daughter's here and I'm on the phone with "name" your other daughter!.
I can hear my mother doing her version of screaming because it turns out the nurse was there washing mother up and putting new nightgown on her and apparently she was cold.

But now I find that the 'eyes open' was only for a short time and they are mere slits. sister asked if the doctor was by the nurses offered to page him but he never responded. Sister also gave her cell # but there's been no reaction from him since.

Currently sister is by bedside with my Mother's Sister and brother-in-law who came to see how she was actually. My Aunt is 82 and my uncle is 91, generally good health but starting to show age. My Mother's other sister whose so crippled by a bad back and arthitis, is almost 90 (this yr).but she can still dress herself, cook herself and basically take care of herself and her trailer.

So I would like any more info on what people experienced towards the end. Any questions we should be asking of doctor? if so what? and also how much longer people feel this could go on.

Love you all
CaringSister54 (aka Diane)

 
Old 01-21-2009, 01:52 PM   #6
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane I am so sorry this is happening to your Mom, your sister, and you. I pray it all goes well, whatever that may mean. Perhaps your Mom will fully wake up and have go to a NH for round the clock care. Perhaps not.

You asked how the passing of our loved ones happened.

Mom got sick on Christmas Eve 2007. She had been in the NH for 2 years, after falling and breaking her hip and being unable to walk again.

She had stopped processing food or absorbing her medicines in April.

Now she had a bad cold, bronchitis and actually pneumonia, which I didn't know.

On Christmas Day she was lethargic and stayed in bed unresponsive, the same on Dec 26 and 27. On the 27 I got company from Germany (granddaughter, age 11, accompanied by my Ex who did not stay with me here) planning to stay a week. I was torn between staying here or flying to NY. On the 28 my brother called, very happy and elated - Mom sat up and asked for food! She was getting better!

On Dec 29 I went out to eat with my company and my family here. I got home around 7 PM and went on the Internet to tell my brother about our happy day. While on line, I got an IM from him "get off the line, I have to talk to you."

Then I knew Mom was gone.

I called and it was so.

My brother and SIL had been with her most of that day; she had regressed to the condition she was in before she seemed to recover on Dec 28. They sat at her bedside. She was in a deep sleep. The nurse said, around 6 PM, why don't you two take a break. Go home, eat something and come back later. There is nothing you can do and Mom doesn't know you are here.

At home they got the call, around 7 PM. Mom has passed away. Before he had fully comprehended that sad fact, the NH office called. It's nearly the end of the month - when are you going to remove her things? She is only paid up until Dec 31. The funeral home had not even been there yet to remove her remains.

That's how Mom passed away. Alone in her room.

When my daughter and I got back from her funeral, which they put off until the day my granddaughter flew back home, I found a red feather here in my apartment which had never been here before. It was lying on the lap of one of the dolls in my collection -- a doll named after my Mom. I take it as a sign from her that she is fine, alive, light on her feet instead of wheelchair bound, and floating somewhere else, happy. Red is the color of life!

Love,

Martha

Last edited by Martha H; 01-21-2009 at 01:56 PM. Reason: full of errors, still an emotional issue

 
Old 01-21-2009, 07:52 PM   #7
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane
It sounds like this latest event with the fall and admission in to the hospital has pushed your mom to another level. She may just pull out of it. Or she may remain in the state that she is. It is so hard to predict what is going to happen and when. I have learned that from all the past experiences my Mom has had. Each time this past year when she would be admittied in to the hospital /ICU for her CHF I would think ok this is it she is not going to pull through this time. However, she keeps defying all the odds and pulls through. I call her a cat with nine lives!! Unfortunately, with every episode she has excelled to a new level with the Dementia. She comes home from the hospital /Rehab worse then when she went in with the Dementia. She has been home a month now from her last hospital/rehab event and she is at a level similiar to your mom's where she doe not eat. She only sits in her recliner with her eyes closed and moaning. I thought she was in pain when I first heard the groaning, but have come to realize that is what she does now. My Dad is like your sister where as he trys to force her to eat. He prepares her meal and gets angry at her when she doesn't eat it. He believes all she needs is to eat and she will bounce back to her old self. I know that is not the case. She no longer has any desire to eat. I generally just make sure she has liquids to keep her hydrated. I will give her Gatorade or ensures. Those she will drink and cereal in the morning is basically all she has all day. It is only a matter of time when she will be back in the hospital. Matter of fact the VNA Nurse talked to her PCP today about having her admitted for Mental Staus Change as the VNA feels she needs to be admitted. Then from there go into a nursing home. She feels it is time. I agree but Dad will not do that. So for now I just wait and see what happens.
I completely understand what you are going through Diane it is very difficult not knowing what really lies ahead. You know something is going to change and change soon but just not sure when. It can be very hard!!!
Thinking of you!!

Love Pauline

 
Old 01-21-2009, 08:13 PM   #8
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

thanks to everyone. I just want to share that I went to the hospital after work and sure enough, she was more alert than ever before.

When they brought the tray of food, I raised her up and and tried to give her some of the puree vegetable which she promptly started to scream and try to spit out. I used a napkin to remove it from her mouth and she tried to bite and would've bit me if I didn't move fast enough.

I then looked and knew she was mouth breathing so I opened the apple juice and put it in a medicine cup and put small amounts in her mouth and she actually swallowed it. But she wouldn't take food. With the nurse there I put a small amount of potatoes in her mouth and she proceeded to take a fit and try to spit it out. The nurse had to put a spoon and scrape it as much as she can but mother keep biting down on the utensils very, very hard.

Then I tried to put her right arm outside the cover so she can move around and then she would wave the left arm towards me and I'd give her my hand to hold.

She can't make her needs known. She had tears in her eyes and I asked her if she was in pain (she's got a nasty bruise on the top crown of her head and her left eye is all purple and the stitches). She nodded 'yes'. I'm not sure if it was a clear moment and she answered right or was it a knee-jerk reaction.

But I went out to get the nurse and told her my mother may need something for pain so she put something through her IV. I said either its the catheter bothering her, the stitches drying out causing pinching, or she had a headache.

it so very hard. Well it looks like unless she goes because she's not taken in nutrients without the IV, she'll probably go to a nursing home. Social services gave Sister a list of those and I told her to pick three she wants to see and plan it all for one day and I'll take a day off from work and go with her but I didn't want to do it on the weekends and lose my time with my BF.

Thanks for everything and keep us in our prayers.

Take Care
Diane

 
Old 01-21-2009, 09:13 PM   #9
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane... I am so very sorry to hear of the downward turn of events with your mom. I know it is difficult for both you and your sister. I do hope your Mom stabalizes and you can find adequate placement for her. You are being so wonderfully supportive of your sister. I do hope your sister can adjust to the new turn of events with your Mom. Hang in there and know that we are with you.

Love, deb

 
Old 01-21-2009, 10:55 PM   #10
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane, i am thinking of you too. Whatever turn of events the future holds, i guess the only comfort we can take is that it is out of our hands. Lori
P.S. to Martha...i loved your red feather story, it made me cry in that good kinda way...

Last edited by upatnite58; 01-21-2009 at 10:57 PM.

 
Old 01-22-2009, 05:26 AM   #11
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Dear Diane, I am so sorry things are going so rough for you and Mom. Sister too. I have never had to deal with this side of Alzheimers. The screaming and biting. How terrible for everyone involved. Gram would bite and scream when you tried to shower her. Her caregivers at home would do that job. I tried once and that was enough for me. Sister tried also and never tried again. We couldn't handle her. She swallowed until the last 5 days or so. I'm so sorry.

Its so sad that she can't make her needs known. I don't know what to say to you except I think about you and your Mom all the time and I wish for you all that its over soon. If it is truly the end for her. You followed your instincts and ask for something for pain that was a good thing. She deserves not to be in pain.

I pray you can find somewhere for her that she can be relaxed and cared for completely pain free. I just couldn't take the thought of Gram being in pain and she couldn't tell me. I know that feeling very well. Its all so hard isn't it?

I'll be thinking of you. Keep us up to date on your progress and try to stay calm. Easy for me to say I know.

Love, Chris

 
Old 01-22-2009, 07:13 AM   #12
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Diane,

You are doing great. How is sister holding up? I know how difficult this is on both of you. You are wise to do three nursing home visits. You should be able to get a good idea from the three of them which one you would like mother to be in.

You want one that has no restrictions on visiting hours. One that will welcome you at any hour of the day. One that will allow you to call the nurses station to check on mother any time of the day. Check on the ratio of staff to patient.How many nurses are there? When do the doctors come through? Check on the activities that they do-I know that mother isn't actually a joiner, but you need to see that they are actually keeping their patients busy. Check how often they bath them-not just a sponge bath.

I hope your mother continues to improve...hang onto the towel tight, caring. We've got the other end.....

 
Old 01-22-2009, 08:44 AM   #13
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Re: Saga is slowly and painfully coming to a close, but I need help or answers

Caringsister...(I thought about using "Diane"...but love the thought put into your username!!)

I'm just so sorry. Please find the comfort you so need in helping your Sister understand. You are all each of you have...and it sure sounds like this long journey is almost over. I remember both inlaws bringing their legs up into an unatural position like you describe...

I believe our loved ones can hear us too...and I'm glad you're both there. Please know you both are in my thoughts and prayers....keep us posted, my friend...........Pam

 
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