hi all, well i have been with mom at her assisted living apt. for the past 3 weeks. i literally ran out of there. i feel ashamed to admit that i just couldn't take it anymore. Mom is about mid stage five. i think she see's me as a ten year old. she can't even cook for herself and she keeps asking me if i'm hungry??? honestly 27 times in one hour. you must be hungry...you haven't eaten at all today. good God...yes Mum ive eaten....NO YOU HAVEN'T, YOU HAVEN'T EATEN ALL DAY!!!. telling her that i have doesn't seem to have ANY effect. I'm 5'5' and weigh 130 lbs. obviously i've eaten!!!! Then the questions start about where my husband is??? he's in Quebec City Mum he'll be home in 3 weeks. well where's your husband??? in Quebec City Mum...well where's your husband?? this is just a taste of the repetative questions. where's my daughter?? where's the one with the children?? you mean my daughter? yes..where is she?? 20 times in one hour...
God help me i hired a nurse to come in and check on her and put her name on a list for a nursing home..and i just ran out of there. What is wrong with me?? i literally feel like i have PTSD, i'm hiding under the bed right now...avoiding peoples calls...is this caregiver burnout that i hear so much about?? I am an only child..so i can't hide forever...what do i do????
You diagnosed yourself correctly - 3 weeks into living with a stage 5 AD patient, you came down with the dreaded caregivers burnout. Lucky for you that you escaped in time!
I had it when I lived with my Mom. Some of my symptoms were, heart palpitations, insomnia, crying, screaming into a pillow, eating too much fatty food, neglecting my own teeth, feeling suicidal and desperate.
Caregivers in nursing homes work 8 hour shifts, and in the rest of their day they can rest, play with their children, go shopping, go out with friends, etc. You (and I) were 'locked' into the sick person's life 24/7. No one can stand this. Add to the repeated questions and irrationality the inabilty to use the toilet, wash themselves, eat properly, take the right meds at the right time, and you are not only a companion to a person in another world, but a full time nurse as well. I repeat, no one can do it!
Placing her in a good nursing home will be the best possible answer, and I hope you can find one very soon.
Oh My God.....do I understand and have great sympathy for you. I spent 10 hours yesterday with Mom and I thought I would lose my mind until I left last night after putting her to bed. The same questions over and over until I couldn't talk because I lost my voice. Mom isn't getting better its worse every day. I'm completely exhausted today...........burned out, stick a fork in me, DONE.
I'm not sure how long this can continue because its just too much for any of us to handle. Nothing sticks.......NOTHING. There is no way in this world that I could have lasted 3 weeks.... no way.
Martha is so right about a NH move. You can't keep this up because your no good to your Mom if your not well yourself. I'm not sure whats going to happen to us at the moment and I'm too tired to think about it now but I'm so glad that you have made the decision for yourself. Get some rest and I'll be hoping that she is moved soon.
Sorry for what you are going through.....but honestly, I completely agree with Martha and Chris. My uncle is my grandma's sole caregiver pretty much, and all the symptoms that Martha has mentioned below, he is going through, she is right on the money on this. No one can do this by themselves. I guess you could say he is "doing it"....but he is killing himself by doing so...and in turn neither one of them is getting the proper care. Please dont let yourself get to that point........
After reading these posts, I cringed because we were always frustrated by the fact that Mom couldn't talk at all.
I guess you don't know how bad you have it until you talk to someone who has it worse.
At first we were both frustrated that Mom made a sound in her throat when she just sat and was breathing. It was so aggravating. And Sister would say, it wouldn't be bad if Mom just stopped making that noise. Then she did but she also started the screaming or la la la-ing all the time. After a few months, it changed to her saying 'ah ah ah' that was accompanied by brief moments of unconsciousness.
This was the last 4 or 5 months. Hard to remember these bad times now that she's gone. It true God makes good memories so that the bad don't last that long.
Oh well, I said it before as I said it now -- God Bless the Caregivers.
thank you ladies...i guess i needed some validation. i realize that i cannot do this. i know that my attempts have only accomplished both making my mum upset and damn near killing myself. on the last day i would have given odds that i'd be the first to go. i did literally fall apart. i managed to keep it together long enough to explain to mum that it was time for me to leave and that a good friend would be checking in on her. she was fine when i left but on arrival home there were 21 messages on my machine. all from mum. why did i leave? where did i go? when am i coming back? am i mad at her (huh)? i thought you were coming back today (huh)? can i come back today? and on and on and on. 21 times....
the lady that is going in is a qualified nursing assistant with extensive AD experience. thank God for her....i'm not sure what i would have done otherwise. the wait for a nursing home in this area is upwards of one year. it doesn't help that this small area is primarily french (Quebec, Canada) and mum speaks no french. a bilingual nursing home makes it so much harder. i did manage to get her into the Dr. while i was there...big deal all he could say is she needs assistance until a nursing home becomes available. yeah thanks pal..i kinda knew that. a nurse came by to assess her and found her high functioning for stage 5. not an emergency for a nursing home. amazing she could tell all this from a 20 minute interview. Especially considering that she barely spoke english (had a dictionary with her)... the state of health care is absolutely appalling in this province. oh well..one day at a time i guess...
again thank you ladies for not telling me that i am a useless daughter...that's kinda the attitude i got from the few people that still have limited contact with mum. the rest are long gone...sad.
Let me give you a big hug...I understand what you are going through, I went through the same thing when mom was here for Christmas. I was so hopeful and thought it would be no problem caring for her which I did for a little over a month. It wasn't easy, it took more patience then what I had in me. Maybe it would be easier on you if you went for shorter visits instead of being with her for 3 weeks straight? Just remember to take care of yourself first because you won't be any good to mom if you are burnt out.
I want to give you a hug too upatnight. I know where you are coming from. Five days in the room with Mom and Dad when they both had the flu last winter did the same to me at one point. I had to leave and gather my wits about me before I could return. And I have counciled my staff on caregiver burn out. It is so different when it happens to you. But you will gather your wits about you in time. Excellent that you have hired somebody to check on Mom and help her while you recover. Time is what you need. A good hot bath, dinner out with friends, anything different that will lift your spirits will help. Take that time for yourself and keep working on nursing home placement. Yes, that is a difficult decision but it is the best for both your Mom and for yourself. She will get fresh faces through the day and you will be fresh yourself when you visit with her. So don't feel guilty for making life better for you both Until then, give yourself the gift of time away when you need it and hang on to all the help you can get for Mom.
Oh Boy do we all know what you are going through! The questions..over and over. One of mom's favorites the whole time she is eating when we take her out is...what am I going to do with all of this food...do you want some of my food because what am I going to do with all of this food??
We always put in a go box so she can have it later but until then we hear it. We have learned to smile a bit about it...we expect it so we now make it a drinking game...everytime she says it we drink...tea, coffee, water..whatever and when there are a bunch of us together we all get kind of silly..we don't do it to make fun of her but to make it something we can all deal with by using our sense of humor...once or twice she has even joined in not knowing why we were drinking. And she just smiles when we all laugh. God bless them everyone.
My mom too is always asking me if I need to eat when I'm at her place...so I have learned to walk around with food in my hand..a pretzel, a cookie...something. One day I had the same cookie nearby for about an hour...mom finally asked me if I was going to eat her whole box of cookies!
I don't mean to make light because I certainly understand the wanting to run from the building. I remember lashing out at my mom's constant questioning one day about if my 2 year old granddaughter could have a piece of candy.. after the 50th time I said with a raised voice..YES, give her the whold damn box! Well, didn't I feel like a dog afterwards for hollering. Then mom whispered to my granddaughter..."grandma is crabby." Yep, grandma was crabby.
I have done the same thing Meg. I carried the same half of a cookie with me all day once. If Mom ask if I wanted something I just showed her the half eaten cookie. It kept me on my diet. I do use diversion to stop the questions as well. When she's stuck on a thought I will help her start the laundry or take her for a walk or pull out her life album. Sometimes turning on the TV and letting her read the scroll lines helps. At least each comment is different Sometimes she will go back to the repeated questions but sometimes it breaks her thought long enough that she forgets.
it helps to have a sense of humor. I know its hard. I am really feeling the stress of caring for my mom. I have a support group once a month, and the adult day center once a week. I should be happy. But still her Alzheimer's is getting worse, and me with it. I try going to funny websites and watching one of those video websites when I can.
Last edited by frankie007; 03-02-2009 at 06:52 PM.
Reason: replacing a word that was blanked out
I think it was IBake that told me long ago that it would be time to place Mom when the caregiver was ready. That's what caregiver burnout does. Mom was probably ready long before but at some point the caregivers wears out. There is no guilt in reaching your limit. We all have them in every area of our lives. Just know when it is time to say enough is enough before you do physical and mental damage to yourself. Caregiver burn out is real and will take both a physical and emotional toll.
Love, deb
PS, frankie you are right about a sense of humor. The more you can laugh the better off you are. When you stop laughing, it is time to find other alternatives
I too, feel that I have burnt out all I've had to burn out! I am at the end of my tether as I have ran out of solutions to make this an easier journey for both me and my mother in law. I am endlessly arguing with her about personal hygiene. She will go days, wearing the same underwear. Knowing that she has lived days and slept various nights with the same underwear(this being socks, vests, stockings,bra's bodyshapers etc) I have to then resort to force her to shower , giving her clean clothing to wear. I find this stresses me out completely because she keeps telling me that I think she is a pig and that she is walking around smelling horrible and looking terrible, which sometimes is true but she doesnt think any of it. She tells me she washes her own clothes and that they are never dirty anyway. Her teeth, well I wont even go there!!. If anyone could tell me how to approach this in a better manner, please let me know.
the walking around with food thing is brilliant. Can't believe i never thought of that. thank you i will certainly be trying that one.
The personal hygeine thing is just a place i cannot go. mum as well wears the same clothes everyday, will not bathe, etc. she says that she has a sponge bath everyday and i do hear the water running but..i just don't know.
thankfully the aide that is going in will be attempting to get her in the tub. She has told mum that the Dr. says she must get in the tub with bath oil as her skin is too dry but she needs assistance in and out of the tub. The Dr. never said this but mum would never argue if a Dr. said it. She doesn't even remember seeing the Dr. So we'll see if this works. She also has someone come in to do her hair once a week, this has been going on for years so at least i know that her hair is being washed at least once a week.
Now if only i could think of a way to stop the incessant "did you sleep?" questions. Maybe i could walk around with a pillow? LOL again..thanks ladies
Just read your post, upatnite58, and all I can say to you is, I have a deal for you.
You find a solution to the persistantly asked questions: "is it cold today?" "arent u cold?", is it cold outside?" This is asked about a million times in 12 hours per day. I will then endeavour to find you a solution to "did you sleep?".
All I can say is I really wish I had a cure for this horrible disease.
There is no use to argue with her Alzheimers because she truly believes what is in her hear and you can no more convince her than she can convince you that she has already showered. I battled with Dad for a while until I found the little tricks that work for him. You just have to keep trying with patience.
I can NOT get Dad's clothes off once he has them on. Just the process of dressing is complicated and exhausting for him so once it's done, it's done. But if I can catch him just as he gets up out of bed and goes to the bathroom I am much more successful. Normally it is initially a suggestion, while he sits on the toilet, to just "change underware" as I reach down and start taking them off his legs. That's simple enough because he is already sitting. He will then let me help him with his T-shirt. Then I turn on the shower water. He looks at me and ask if that water is warm or makes a comment about not wasting the water. Then I tell him that's his shower. Surprisingly many times he will just get up and get in the shower. Sometimes I do have to encourage him as I guide him that way after he gets up. He's undressed and that's what you do when you are undressed... you shower. I hand him what he needs as he needs it, encourages him, and tells him how good that must feel. Before I know it he is showered. Yes, it took a while to get from the constant argument to this point but it has well been worth it.
Telling them to shower is frightening when they don't remember how, don't remember if they have done it or not, or if they are convinced they have already done it. There are so many steps involved that it is mentally if not physically exhausting. But if you keep the pleasant positive encouragement, take it one step at a time, and make it as easy as possible it seems to work better, at least it did for me. I never combine brushing teeth, shower, and shaving. That is overwhelming. I catch the teeth on another bathroom visit and hand him his electric razor at some point while he is sitting in his chair. Pleasant, simple, and easy. Any argument will just put them in foul humor but the use of humor, calm, and encouragement seems to work for me. If it doesn't work this morning, if he's in a extremely stubborn mood, or puts up too big a fight we just change underware and let it go until tomorrow. Eventually it was not a battle at all but a guided activity. Yet, to this day if I say, you need to take a shower he will tell me that he doesn't! He bucks up when you tell him he is stinky
i'm actually thinking of flash cards for the ever popular questions. or no...maybe make it like a gameshow...and the catagories are:
1. did you sleep
2. did you eat
3. is it cold out
4. what day is it
and of course the ever popular....5. the remotes broken!!!
i'll take "what day is it" for $100.00 Alex...
wow Mum...you just won a bath!!!!
Sorry guys..just thought a little humor might help. Guilty laughter all around.
My mom has the same problem. She doesn't like to wash up, swears and resists when someone tries to get her into a bathtub. At one time, she had an accident and my sister could not get her into a bathtub because she was resisting.
It's strange how time does tend to make us forget how really bad it was while they were at home. I keep asking myself "How did I do it?" ... all I can say is that God does give us the strength to make it thru. And, yes, believe it or not, one day you'll be able to look back and wonder how you did it.
I kept thinking I can do it one more day, one more week. It took me realizing what having my wife at home was doing to my 15-year old daughter, to force me to make the NH decision. Needless to say, I waited way too long.
But one day soon, you will have peace and calm and no guilt about the decision. No way I could go back to that situation again. K
Until then, give yourself the gift of time away when you need it and hang on to all the help you can get for Mom.
Oh Boy do we all know what you are going through! The questions..over and over. One of mom's favorites the whole time she is eating when we take her out is...what am I going to do with all of this food...do you want some of my food because what am I going to do with all of this food??
Sometimes she will go back to the repeated questions but sometimes it breaks her thought long enough that she forgets.
