Hi, I am Bonni. I care for my 91 year old grandmother in my home for the last 7 years. Things have taken a bad turn and I am very stressed. My grandmother now cannot walk and has dementia. She is very well loved and cared for in our home and I was hoping to make connections with other caregivers for support durning this very hard time.
Bonni

That is WONDERFUL!! 94 and up and about!! That is a blessing!
This latest experience has taught me a BIG lesson. I cannot take my Nanny for granted! Sometimes we all move so quickly here while she is just hanging around. I do not mean we ignore her. We just run in many directions. Now I needed to stop and refocus and even though it has been hard we have had some good times. I have enjoyed many of the late night chats. I am not saying I want to sit up every night... LOL But at night she talks much more then during the day so maybe I will do a few slumber parties with her.
NOW THE GREAT NEWS!! Nanny is walking and going to the regular bathroom by herself again!! She is eating out at the table with us once more and last night for the first time in quite sometime she slept from 12:30 am to 6:30 am!! It was GLORIOUS!! She is OFF oxygen and doing well!! Everyone kept telling me this would be it and I knew she would rebound!
I can stand losing her (well not really) but only if she has quality to her life and doesn't suffer. I did not want to see her go like she was! The doctor said she can make 100!! She is TOUGH!!
Nanny is a blessing to us as well and I think all of us are even more aware of that now!!
Bonni

Been reading through your post and the responses. Thats wonderful she can walk! Amazing!

You wanted to know about our situations? My Mom is 94, and I took her in Dec 29th, 07. Right now, she doesn't have dimentia and can walk, but we never know when that will change. I do all I can to make her happy, and comfortable. She's been a blessing in my life.

Good luck with your Nanny. Funny, many call my Mom Nanny too.

Hi Guys,
Thanks for the advice. I do have tons of tubing. The kids are ok with it. My pups are a mess with it and my grandma is a mess with it. She started PT last Friday but doesn't want to cooperate so they may not come back...

Bad news. The new nurse that I found just never showed up last night so I have been on an all nighter again.

Tell me about your situations.
Bonni

Yep, you are so right, DW. I have miles of it all coiled up in Mom's room and when she is out on the porch or in the living room, I just uncoil what is needed.

Bonni, you don't have to drag the compressor out, or get a portable tank. You can get enough tubing to stretch from bed to the driveway.
It won't hurt to step on it, although I wouldn't STAND on it. The household will get used to it, and of course you'll get enough so it won't trip anybody. When Granny moves around, maybe Hannah would enjoy making sure the tube doesn't kink up (away from the bed), or rolling it up behind her (back toward the bed). Heck, even the dogs and cat were smart enough to realize the tube was not a toy, and they pretty much left it alone, whether it was still or moving.
Thanks for sharing your wonderful news!

Sounds like a good time to call her doc (?) and get some PT ordered for her! While she may not be able to remember much and participate, what YOU will learn by watching and listening will help a lot. Now that you know that she CAN walk, you will really have to get on your toes about safety, etc.

Best wishes to you! I soooo understand the joy you felt - I have recurring dreams that Mom has suddenly started walking, but for us, it's only a dream...

In reply to Bunny,
The franticness is recent. She does have dementia but only gets frantic when she is ill or hurt. She has never slept however which was not a problem when she could get around. She would just be out in the kitchen snacking at night. But now it has been a nightmare. But as you can see from my other post there may be light at the end of the tunnel for us!
Bonni

I am sorry I have been offline for a bit. Thank youu so much for the wonderful support. I hired a night nurse and have rested my body and mind a bit. I think I was getting a bit flaky there for a while!!!

I have BIG news!! This morning after the night nurse left and before the day nurse comes. (Night 9pm-7am Day 11am-6pm) I was out in the kitchen making eggs after the nurse left and I heard the toilet flush... I figured it was Hannah. (My four year old)Then I turn to look and NANNY(my Granny) was standing in my kitchen!!! No walker, nothing, just walked in without making a sound. Now of course this brings up a whole new concern about falling.. BUT... Nanny has not walked in a month!!! She has not been able to get out of her chair without being lifted and then placed on a commode!!! I carry her from her chair to her bed by lifting her under her butt and kinda hunching backwards so she stays straight with her feet almost on the floor. I was shouting with tears running down my face!!! I was like, "YOU CAN WALK, YOU CAN WALK" she just looked at me confused and said, "And??? Your big news is what??" I was like, "You have not walked in weeks, you fractured your spine and pelvic bone, I have been carrying you around." She said, "My that is big news!! It is news to me!! " Then she added, "But it does hurt, so that explains it" So she had coffee and eggs with me in the dining room!!! She was short of breath so I had to drag the oxygen compressor out. But it was worth it. Now I surely have to get her a portable!!!

I keep telling myself not to get my hopes up but I do not think we are losing her yet!! I am now going to allow myself to get my hopes up!! I grabbed Nanny and hugged her and she said, "Wanna dance? !!!" Oh this is sooooooooooooooooooooooooooooooooooooooooooo GREAT!!!

Bonni

Bonni you rant away all you want sorry I was so busy this weekend here I missed all of this.
The "Who am I" thing boy do we know this one!
I sure as heck didnt know who I was gonna be when I "grew up" then all of a sudden BLAM! Like a sledge hammer *a toy I often take out for a spin*
It hit me why not do this job full time (somebody kick me) Im kidding, but this is exactly what Im doing now I went back to school and am enjoying my new path in life heck Iv been doing it off and on since I was a teenager, my MIL for the last 10 years so I figured hey why not.
Now Im working Hospice and I can tell you it is the most rewarding work I have ever done I wouldnt change a thing
As for the suffering well my patient right now is wishing Dr Death (I will not print his name!) was still alive to help her end this, shes been sick for a few years.
All I can tell you is that any comfort I can give her within reason it eases that feeling a little especially when she smiles back at me...she lights up a room.

But seriously Bonni your Gran has she been like this for a while?
Is this "frantic" behavior recent?
Shes been in a hospital I know, they hate being moved around/unfamiliar places but are you sure she doesnt have an infection of some sort?
Like maybe a UTI or could she be dehydrated or having a bad reaction to meds?
My MIL does this also and to this degree, almost always its something health related when she gets this out of hand

Bad news this morning. I have had a very close relationship with my grandma's doctor who has been my doctor as well for quite sometime. My grandmother other doctor, "DUMPED" her. I am guessing all of the calls and working with visiting nurse was to much trouble for him. So my doctor took my grandmother on. He has been wonderful ,calling at least twice a week. Taking time to personally explain things to me or even just to listen to me cry. He just called a moment ago and said he was moving to Florida!! He is leaving this week!! He was hoping to get my grandma through all of this before having to upset me with this news but now he had to let me know. I am so very upset about this and what a time to be sent to a new doctor! He assured me that he will fill in the new doctor about our situation and make sure we get the same top level care. I am certain we will because I advocate well on my gramdma's behalf. This was just the last thing I needed right now.
Bonni

Thank you Bobcat! I do not know where all of those thoughts came from last night. I guess I am so overtired that I am ranting...

My grandma would not allow my husband to help her so that did not work out anyhow.

I think making a plan for when the time comes helps me. I do want to sell this home because it is a split level. 2 bedrooms and den downstairs and 3 bedrooms and all the rest upstairs. I had to keep it some my grandma could live all on one level and I could not find a ranch large enough for us all so I would really like a more traditional upstairs and downstairs for closer family living and sleeping. I think the change would do us all good. This house looks like a hospital and has much sadness in it from my divorce. A BIG change will do us good and more then likely I will take a job in the schools once my daughter starts kindergarten in '09. I have toyed with the idea of going back to work in NYC but I do not think I could ever be some fast paced again and the drive is INSANE.

If I know she is ready to go I will be peaceful with that. It is the suffering right now that is getting to me. When she tells me how they are kinder to dogs because they put them to sleep it makes me sob. But she is right in a way I guess.
2 weeks ago when I needed to call an ambulance she said, "just let me go". I had to explain to her very calmly that for ME I cannot do that. I could be charged with neglect. With anything, be it getting an x-ray , eating or whatever it may be if I say, "do it for ME" she will respond. She does love me.

It is the nights that are killing us now. She has sundowned in the hospital etc... calling my name non-stop and screaming, now she does that at home. The nights are an entirely different thing then the days. She gets FRANTIC and calls my name all night. She throws things at me in the other bed and then when I wake up she doesn't even want anything or simply cannot recall what she wanted. Then she says she is sorry over and over because I guess she doesn't understand why she does it to me and then she feels horrid when she sees' me staggering about half asleep. She will tell me to go back to bed and more then five minutes later it will start again. I have taken every step to prevent sundowning for her but it just does not help.

I do hope at some point I can help others here.. it is a wild ride and not one to take alone.
Thanks,
Bonni

Sounds like you have been a care giver for a very long time indeed. Your H is a winner. Don't feel quilty, he doesn't "have to" help.

I understand your concerns about who you will be, you are not alone there. People find a need to rediscover themselves many time during a life. When they leave home for the first time. Become a spouse, become parents, get divorced or widowed, when all the children are gone, when they retire. When the caregiving is over.

You have had some practice at this. Maybe too much, it's understandable that you aren't looking forward to it. Few of us do. You may have quite a while to go, so vent , get it out of your system and buckle up for the ride. It can be a real roller coaster.

Welcome again, Bonni, with your experience you are going to be a big help here.

Thank you, You are so right. I guess one of the reasons I am getting so upset right now is because I do know the time to let go is coming soon. Nothing I do, nothing I feed her, nothing the doctors can do will change that...

Bonni

I have another thought gnawing at me and I wonder if anyone else has ever felt this way. 7 years of my life is a long time. When she is gone, who will I be? I was always Harriet's grandaughter. When she was well she was somewhat controlling and for 11 years I helped her care for my grandfather until he passed away in 1989 two weeks before my eldest son was born. Then I took a huge leap and moved far away , bought a house had 3 more children, got divorced, got remarried and here I am again, Harriet's granddaughter. Her caregiver. People pat me on the back and tell me I am great, people pity me when I am tired. I take her to doctors, I chat with her. Who will I be?? I know that sounds dumb, but we are I am certain Co-Dependant yet it has lasted my entire life and continues to be. I cannot imagine waking up one day and it will be no more. I am not even all that young anymore. 41 (not old) yet for 7 years I have been home at a certain time everyday. Made plans around my situation etc...Even for the brief time that she was still in NYC and I moved to PA life still revolved around her getting here or me getting there. I would have never even have met my husband if he didn't show up on my front lawn to buy a lawn mower I was selling! (My grandma already lived with me once I remarried)My husband is sleeping in my grandma's room tonight to give me a break and I feel guilty having him do it.

Somehow my grandma went from kinda a domineering woman to a real sweet little old lady and that is really nice and I know she loves me but some things make me wonder. Like my house burnt down when my son was 2 and my Grandma did not take me in???? She does not recall that now and when I asked her about it once she said, "gee, I was rotten" then I felt very bad. She was not rotten. It was just a very unloving family, a selfish family. My parents are NUTS and I think I tried to care for everyone just to be liked!! Now I sure am liked by my Grandma and now I will lose her.
I am sorry, I know I am ranting. I know I have a wonderful husband, yet he works non-stop and my kids do not get along with him so day and night it is a battle. My 12 year old daughter and 18 year old son are flat out RUDE to him. I hide in the issues surrounding my grandma and my husband hides at work. Don't get me wrong, they are good kids but they had it tough. My ex was an abuser and he completely lost all custody and visitation. That is very rare and I felt for my kids so I spoiled them. Now they are bratty teens. Well two are. My 11 year old and four year old are still loving. My son is getting set to start collage which also has me in a tailspin . He is my baby and he is going also.
I am sorry, everything is taking a major toll on me. My head is spinning, I never sleep and I feel guilty all of the time, I do not even know why I feel guilty. I always feel like I have not done enough.

My mother called me because she had back surgery. She lives in CO and she thinks she might not ever be able to work again. She asked if I would let her come and be with me. I have not lived with my mother since I was 11 and at first I thought, "WOW, a chance to get to know her. Then I reflected on my life. Being sent to live with my fathers father at 14 to care for him because he had cancer, losing him. Then caring for my great-grandmother and being her , "night nurse" Then caring for my Other Grandfather with my grandmother for 11 years because my grandma traveled many times during the year for months on end and now caring for my grandma for 7 years. I told my mom, "NO WAY". I am adopted and found my birth family 6 years ago. Due to all of this both of my birth grandparents passed away without me even meeting them. I have met my birth mother once and my birth father only twice. They want to know me. I just can't be there . Then I feel guilty for feeling mad. For feeling that my family has taken advantage of me, for feeling like no one really ever cared about what I needed. I get all kinds of criticizing done by all the members of my family about how to care for my grandma and no one ever even comes?? My mother comes for weeks at a time to babysit my brothers daughter and never once came to care for her own mother. I feel bad because everything in me told me to walk away at the onset of all of this. I was getting out of a bad marriage. My career was going well, my family was supposed to be handling things and all they did was rob my grandma blind and left her to rot. I couldn't walk away. I love my grandma, she was really the only one who ever nurtured me in any way. I took her here. I just drove into the city and brought her back here with me. Then a year later she broke her hip. My family had her in a nursing home. It was horrid and of course it was one right near my house because they knew I would sit there non-stop, so I took her home here again. I really have not regretted any of it and I love her dearly, it is just now, if all is said and done I will feel lost.

My grandma just woke up. I better get in there, she is calling for me...
Bonni

Bonni, sweetheart, This is something you are going to have to face one day....You can't keep her. It isn't about losing her. One day for some reason or other, you won't be able to keep her any more. That is just a fact. My Mom is 93. Grandparents are long gone. Several members here were raised by their grans. One of Mom's caregivers was raised by her granma.

Cry all you want. We have strong shoulders here. Tell us more. We can't change reality, but we can be there for you. How can we help?.

Wow!! Thanks for the wonderful welcomes! It has been a roller coaster since I have taken this on. No help from my family, only fights and problems from them. BUT my grandma and I have been very close. She was more a mother to me. I had no doubt in my mind that when things became bad I would take her. Right now however she just never sleeps. She screams my name night and day and I am worn thin. I have someone here during the day to help, kinda like , "Alice" from The Brady Bunch. But now our money has run low and my Grandma needs more care , I am at a loss. I spend TONS of money everyday, money we do not have. Medicare covers very little and my family went through my Grandma's money years before I even knew what was going on. None of that matter however. I just do not want to lose her and I fear the end is drawing near. I cry all of the time. I check to see if she is breathing. It is all so hard...
Bonni

Welcome, Bonni. Glad you found your way here. When you have time, please fill us in a little and tell us how things are going with your gramma, your family and especially, with you.
Hang in there and remember: we're open 24 hours a day and the coffee is usually still warm.

Welcome in Bonni glad to meet you tell us more when you get a chance our doors are always open

Hi Bonnie, and welcome! You must be one special person to care for your grandma for 7 years!

I'm kinda new here myself (last month). I got my Mom in Dec, 07 and she's 94. All new to me, and I'm learning a lot here.

Yea, I've learned one thing this past 2 months, support helps a LOT! We all need it caring for elderly. Sometimes I wonder how they cared so well for us when we were young!