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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 03/27/09

I am completely burnt out. I have cared for mom in my home going on 4 years. She is elderly and completely helpless, but I have managed....but now, she has begun crying and whimpering every 2 hours, whether she is comfortable or not, night and day.  I know the end is coming and I have called in hospice, but being around this misery, night and day, is very trying.  I love my mom and always will.

Any tips on coping with this?

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Name: June
Location: Danbury, CT
Date: 03/27/2009
Time: 04:42 AM


Oh do hang in there! It is so hard, isn't it? I took care of my mom 24/7 for nearly 3 years. And it wasn't always pretty. But in the end, you realize that you only go around once with this. Does your mom take an anti-depressant? Giving a very small dose to my mom (.5 mg) helped a lot, but she still did cry (mostly when I go frustrated with her - which now seems so trite). Remember that she cries out of fear - and you react out of the same emotion. Being alone in caregiving is scary. But when those days are done, you will know you did the right thing. God bless you. I am praying for both you and mom.

Name: Mimi
Location: New Jersey
Date: 03/27/2009
Time: 06:09 AM


I, too, cared for my mom for 5-1/2 years. She had to move in to my house after major surgery at the age of 94. Things really became worse after a fall in her room & a cancerous growth on her forehead caused her much discomfort & pain. She would moan constantly, due to the pain & the face she didn't want to go on with life. The moaning would drive me crazy & I actually wrote to to ask for suggestions. Many were made & some of them were to put the radio or TV on to "drown out the noise". I tried that, but then could not hear her if she needed me. I tried to distract myself by going on the computer, etc. & sometimes it helped. Well, my dear mother passed away this past July & I still miss her terribly. I would give anything to hear her moan just one more day, one more hour, one more minute. The only thing I can suggest about your mom's crying & whimpering is to go & sit next to her, hold her hand, talk to her, hug her, comfort her. That will be comfort for you as well, knowing that you didn't give up & walk away. I once asked my mom if she wouldn't mind going for a one-day respite stay & she looked at me with the saddest expression & said "why are you trying to get rid of me?". If I could take those words back, I would. I hugged her afterwards & said that I would never do that & apologized to her for having said that. She totally understood. It is very tiring to go through with this caregiving, as well as trying. But, in the end, for me, it was all worth every second. It has brought me a different outlook on my own life. My mom's hospice nurse came to my house within an hour of my mother's passing & she told me I should be proud of myself for having dealt with everything all those months. I did this 24/7 & I would do it again in a heartbeat. Try to be good to yourself. I wish my mom was still here so I could hold her hand, run my fingers through her thinned-out hair from radiation & even hear her moans & groans. I know she's forgiven me for the times I was not as patient as I should have been. Please give your mother a hug from me.

Name: Virginia
Location: Larchmont
Date: 03/27/2009
Time: 08:39 AM


When my mom was in the later stages of Alzheimer's I found distractions and keeping her busy were helpful with handling her behaviors. There are activity aprons where she can button ,zip , or keep her hands busy. You can purchase it online. Videotapes that are soothing of nature, puppies and kittens also helped. As communication skills decrease whimpering may be her only way of saying everything she wants to say. Gentle massage, powder and soothing touch also helped a lot. You need time out of the house to remember the rest of the world-hospice ,I hear is wonderful and will be very supportive. I am about to call them in now for my father. best of luck to you.

Date: 03/27/2009
Time: 12:16 PM


You absolutely need some respite. Honestly I'm surprised Hospice hasn't encouraged and helped arrange that for you. You need time away to rest, clear your thought, and have some joy. If you get some time away from full time caregiving, you won't feel like you just have to cope with it. Visiting Angels provides respite. Look for one in your area, or ask Hospice for a referral to a compassionate, trustworthy, and reliable company. You will be so glad you got some help and relief. They can also help with some light housekeeping to alleviate some of the burden of doing it all. They can wash your mom's clothes, clean up the areas she spends time in, etc. You can go to, put in your information, and find the closest office to you. A representative will contact you, come to the home, generally for free, and help you figure out how much respite would help, and the days and times. I hope this helps. You will be able to give the love you really want to when you take care of yourself.

Name: Twila Westphal
Location: Temple TX
Date: 03/27/2009
Time: 12:47 PM


Take advantage of all the help Hospice can offer you & try to get out daily to do something just for you!! Just a bit of time away can renew you to step back into caregiving. I've been caring for my dad for 3 yrs & can really relate to your burn-out---if we don't care for ourselves we are no good to those we care for!! Can you get some one to come in maybe 3 nights a week so you can get some much needed sleep? Does your community have day care groups? In our town two churches have started "day out" programs for folks w/dementia they are looked after while the caregiver gets a day your Area Agency on Aging they might know of some resources to help you. Bless you for caring for your mom, as trying as it can be, you will always be glad when you look back that you did this. Take care of yourself :) Do you have a caregivers support group in your community? Another excellent place to get support & help. Best of Luck & God Bless, Twila

Name: LeAne
Location: Spokane
Date: 03/27/2009
Time: 05:37 PM


Darling, you need a BREAK! Ask your hospice about a place which will provide respite services for your mother, so that you can take a much-needed break. Even a few days - a long weekend - will give you a chance to recharge, so that you can refocus and rest. Also, ask about volunteers who can sit with your mother a few hours each day, so that you can get a massage, get your hair done, go to a movie or just shop. Best of luck to you!

Name: CB
Location: Florida
Date: 03/29/2009
Time: 06:24 PM


I first applaud you for taking care of your Mom. God will bless you for this good deed. I am not sure about your Hospice services. But I would recommend you utilize all(Chaplain, social worker, CNA, etc) they have to offer to the fullest. I wish someone had suggested them 4yrs ago for Pallative care as she have been transitioning to the next stage in life. I think once their Physicians-Hospice can evaluate her she may need something to help her relax. The crying maybe her way to communicate with you(like babies do- elderly often revert back to infant stages).Your primary care may suggest something for you as well to take the edge off. Some Hospice location have a Hospice House that you could have your Mom placed in. This may allow you time to step away (Respite care)for a little while. Then you can know that she is safe and you can stay with her as well. I went through this with a both parents and a child and I was scared to leave my love ones for a few minutes. If you have family, close friends, and church members to help. Ask for the help!!!Even if it's 1 hour to go to the store mall or to sit by the lake and read a book. If Hospice can't help (which I am sure they can) google Respite Care in your local area. I believe you have done all you can do and your Mom in her own way loves you for it. When you feel it's time to release her. Whisper in her ear you love her , God loves her and tell her it's ok to rest. My prayers are with your and your family.

Name: Kara
Location: Pittsburgh
Date: 04/02/2009
Time: 05:04 AM


God bless you, the end is tough. We pulled family and friends together so that someone was with mom all the time but no one was with her more than two hours at a time. You have to have a break. I went outside, had my cell phone on me and just enjoyed listening to the noise of every day life. Even if you don't have family try to give yourself a two hour break, get a friend or clergy to sit with her. Keep a cell phone with you so you can rush back if necessary. Take some pictures of the outdoors with your cell phone or a digital camera and show it to her. Perhaps point out some of the beautiful things she planted or memories you have together at certain spots. Sharing positive memories has such therapeutic value.

Name: Patsy
Location: Texas
Date: 04/02/2009
Time: 12:22 PM


My Mother had Alzheimers, and went through what the Hospice nurses called "terminal restlessness" the last 9 days of her life. One day she was fine--as fine as she normally was in the nursing home. The next day she became very agitated and difficult to control, wouldn't sit still, began refusing to eat, had to be medicated heavily, etc. I had never heard of it before and it was quite a shock. It was "the beginning of the end". It sounds like your Mom is going through something similar. Hospice is a wonderful organization, and will be of comfort to both of you. I hope you can get some relief and get a break and some help. God bless you! I firmly believe there is a special place in Heaven for Caregivers!


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