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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 - 07/02/09
How do other caregivers deal with the loneliness of caring for your loved one ? I work 2 jobs and Mom goes to day care from 7:30 - 3:00 pm Monday - Friday. I am very thankful to just have this time for work. I do feel very alone.....most do not really understand what being a full time caregiver means.


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Name: Anne Nuss
Location: Reading Hospital Regional Cancer Center
Date: 07/02/2009
Time: 06:32 AM


I think it is imperative to set aside a regular interval of time, outside of both jobs (work and caregiving) for a stress-reducing "exercise". This could be a gym workout, time for personal journaling, attending a caregivers support group, time to read, taking a walk, or just quiet time alone. Taking your own needs seriously can only enhance the quality of the care you provide. Ignoring these needs can lead to resentment, burn-out, extreme mental and physical fatigue, or ultimately, your own illness and the chance that you will also need care. Don't expect to feel comfortable when you begin to add this to an already busy schedule. But do it anyway........

Name: Connie
Location: Ontario, Canada
Date: 07/02/2009
Time: 10:26 AM


Find other caregivers to communicate with. I quit my job to look after both parents and although I have contact with old friends and a husband who is very supportive, there are times when I do feel alone. Bless my husband and my friends but in many ways they can't truly understand this job and the emotions and dynamics than can come with it. I have a friend in Arizona who I have never met. She also cares for her parents and the most precious support I get is from her. We email each other sometimes several times in one day or drop offline for a day or two but each one of us knows that we have someone to turn to. We email each other (sometimes call) and are able to give full voice to our frustrations or our joys knowing that the other person stands in the same shoes and KNOWS how we feel the way no one else knows. Email allows each of us to communicate when it's convenient, even when that's at 2 a.m. and we know that the next day there will be a reply with words of encouragement and understanding. There are a lot of good people in this forum, find someone you click with. You can also email me

Name: Lesley
Location: Glenview, IL
Date: 07/02/2009
Time: 01:25 PM


During t the time I took care of my amazingly wonderful father who was bedridden for three years (who docs believe had 100's of TIA's, 2 major strokes, and one bleed) in-home hospice, I too was handicapped. I was incapable of walking without assistance or wheelchair bound, but dad and I made it work with the help of my mom and brother. He and I kept one another company daily and boy did we love each other so. I did all the research and had someone come in three times a week to bathe/change him and my mom and brother had to change him in the morning and evening (I couldn't due to my severe back injury), but other than that it was my great honor to stay by his side. He was a miracle really. He had so much damage done to his brain, but was still able to know who we (his family) all were and that smile of his lit up the room up until he slipped into a coma in his final hours. I never left his side even up until the end. My mom and brother could not understandably handle it, so it was just him and me until he took his last breath. I also made all the calls and handled all of the memorial arrangements. It was just too much for them. It had always been just too much for them, that is why mom spent most of her days out of the house and my brother thankfully had a job to turn to. I still remember the moment he passed because I huge gush of wind came in through the sliding glass windows I had left open and blew his sheet up in the air and then it floated down on top of him. That was the moment I knew he was gone. I told him that I would take care of mom and my brother that he could move on. I begged grandma to come and get her son and from that fast rushing wind that is indeed what she did. Once a few months went by I finally agreed to see one last surgeon (after all others had told me that there was nothing that could be done) and I decided to have the four extremely risky surgeries the new doctor recommended (2 surgeries each day in two days four days apart). I had to have 5 quarts of blood and almost died a couple of times, but within 3 months I was riding a bike for the first time in 10 years. I had been blessed with a miracle twice now; first my father and then the return of the use of my legs and being out of extreme chronic pain for the first time in over 10 years. I can't begin explain to you what it was like to have my life back. Tears of gratitude even are falling from my eyes just from writing it here. It was just amazing. I was losing all the weight I had gained, eating healthy, exercising and even dancing the night away. I gave up smoking and was making plans for a future I was told I was never to have. And then one afternoon the phone rang. It was my mom's bank. They had called a number of times and she never called them back, so I decided it was time that I did. I just knew something was wrong. When I called them I found out the bank had frozen her account, because she had put a fake check from a lottery scam into her account and this was not the first time. Then after a bit more research I found out the woman that had never written a bad check in her life and the 20 years she had been with this bank had barely written a good check in the past year. She had bounced almost every check and was charged thousands upon thousands of dollars in overdraft fees. She was moving money over from her IRA but after the fact and only a little at a time and then was also being penalized for that. My father left my mom quite well off, but somehow almost all the money had disappeared. I then realized that my mom had been talking to con men and scam artists daily over the phone from multiple countries. She was receiving mail and submitting checks to even more of them for lottery's, horoscopes, contests, newsletters. You name the scam and she was being taken by it. The bank was of no help and neither was the police because they said that she had signed whatever she signed agreeing to give them this money and the checks. They also said it was impossible to track down all of these criminals who were not in our country. The bank refused to give me more than a 500 or so dollars back for the overdraft fees, although she had been banking with them for over 20 years and obviously something was wrong from the moment she wrote her first bounced check. I then found out my mom had not been paying the household bills. They were in drawers all over the house. She was completely and utterly financially ruined and I was uncertain if we would be able to keep her home. I reached out to friends who my family had helped over the years and they were kind enough to float us a few loans and then I took out a loan against the workers comp case I had regarding my back. I researched and did everything I could to save my mom. I even found out that although I had asked her numerous times about here medical insurance coverage and changing to medicare part D that she had actually never done it. None of it made sense, but then I took her to a incredible doctor who deals with senior medicine and it all became clear. No matter how my mom seemed like nothing was wrong with her on the outside and she could still converse with the best of them, the test showed she had pre-cognitive dementia. I must admit that I had suspected it, but my brother was adamant that I was "crazy" and everyone that knew her thought it was impossible, because she was a very strong woman and certain it was everyone else that was making a mistake. In some ways it is a blessing she still sometimes thinks this way. I got her on the meds which cost hundreds of dollars a month we could not afford, made her sick and did not work. And then I noticed that she was progressing fast. I took her into the doctors again and our worst fears had been realized. Mom actually had Alzheimer's. Like so many in the world this was the one thing my mom was terrified about, but thought she would never get, because it hadn't run in her family. However, she never knew her father who died soon after she was born or his side of the family. It was a denial thing for my mom. All her life denial was something that helped her like so many others in the world cope. Thank goodness in away the Alzheimer's has made it so she never knows she has it. She forgets she has it. I never realized what a blessing the lapse in memory would end up being for the person who suffers from this insidious disease. In the next couple of months I was able to settle my lawsuit for 1/4 of what it was worth, but I am grateful it was there to be able to help me take care of her. I took over guardianship and medicare allowed me to get my mom prescription drug coverage a year later, although they should have allowed it long before. It has taken me two years and I am still not done with fixing my mom's finances. There were more people that had failed her including her accountant and health insurance agent. The accountant completely screwed up her taxes and her health insurance agent retired without someone else letting mom know the awful and expensive supplemental she was on that didn't even take care of prescription drugs. Basically everything bad that could happen to my poor mom happened and so much more. I couldn't even get her anything from the state because past tax returns showed that she had too much money to qualify. I saw the social workers and they were incapable of helping. Any help they could give us would cost money that we did not have. When the new lovely accountant (he is a saint) I hired finishes up her offer in compromise (mom bounced a check to the IRS which also made us almost lose the house) that I started and the redoing of 5 years in back taxes (yes, mom had a lazy accountant before), I will finally be able to get all the necessary things from the state for her. I just hope it happens before I run out of the money I received. I would so love to return to the work force, but I can't leave her alone. I've been trying to find a job I can perform in my home, but thus far to no avail. My brother only makes 22,000 a year, so even though he tries so hard financially he really is of no help when my mom is 100's of thousands of dollars in debt. I can't sell her house because of the market and I can't declare bankruptcy because of the house. I made a promise to my father and I fear every day that I am failing him and my mom, but I keep trying. With all of this said I am so grateful, because the truth is in the awful economy we live in today, we are actually better off than most. My worker's comp case was able to be settled after 10 years (although for much less than it should have been) and happened at the exact time that my family, my mom, really need it. The only thing that concerns me is the way they want to cut senior aid here in IL and across the nation, because if that happens then everything I fixed and was able to save will not matter. Even after the taxes are sent in and her finances are a matter of record she will not be able to get the aid if they cut it. And with the Alzheimer's my mom's personality has been dramatized tenfold and it is almost impossible to get her to leave the house let alone her pride will never let me take her to a daycare center. She doesn't understand and the doctors told me that she will never understand. It's just the nature of the disease. I need to work and provide for us. I need the senior aid to not be cut. The clouds are passing and the ray of light is shining through. I just need that ray of light to shine through enough to reach us. So with all of this said you ask me how I deal with the loneliness? I have decided to get myself physically fit once again after I have another set of nerve blocks (I need tune-ups on my back once a year ;-). I quit smoking 32 days ago, once again. I have learned we must take care of ourselves or we cannot take care of our loved ones. I am launching a foundation and magazine that shows the way others extraordinarily use their strengths, as well as, their adversities to make a positive impact in the world. I live with hope and full of positive energy and most importantly I NEVER EVER give up. I learn more each and every day. I turn everything outward and try to turn even the most negative of things into the most positive things. I am grateful for every moment I have left with my mom and realize with every part of my being that it is not in what happens to us in this world, but in how we handle what happens to us. I unconditionally love and the times when I need to I reach out to others who in turn reach out to me......;-)

Name: Jean Thompson
Location: Ohio
Date: 07/02/2009
Time: 05:08 PM


Do you and your Mother attend Church or Sunday School? This would be a great place to start to expand your social life as well as your mothers. Share your experiences and concerns with them. Can you ask some of the ladies to come to your house for 1 hour for Coffee and muffins...Have your Mom join you... Have her help make the Muffins... You could use your Moms tablecloth... Put a little make up on YOU and Your Mom... You wouldn't believe how a touch of Lipstick or lip gloss brightens your face....How about a bunch of flowers on the table ( grocery stores sell bunches for less than $5.00) Best of all Smile as your greet the ladies.... and chat... You have to make the first step... Plus ask for help for caring for your Mom if you want to just take a drive or a movie by your self.. If you get some more help in... ( if she gets SS then you can use some of the $$ to pay for another Caregiver for a couple hours a week...


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