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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 - 07/09/13


I am overwhelmed with how to deal with my husband’s disabilities. He has had diabetes for over 20 years. In the past three, he has lost a leg below the knee, had eye problems and is now facing dialysis and a kidney transplant. I get so angry about all of it and my husband does not need to feel any worse about his condition then he already does. He did not do a good job of taking care of himself until the last five years—a little late. He is such a strong person, but this thing with his kidneys has really hit us hard. He will start dialysis this week and will be able to do it at home. Still, he has lost so much weight and is so tired right now. I work as a teacher so I am off over the summer, but I am having a very hard time dealing with what is happening to my husband. I am just worried to the point of exhaustion.

He is very independent and I make sure that he is, but there are just times he needs help. I'm not trying to boss him and I don't pity him. My husband has worked and kept going until the eyes put him on disability. He can't drive and is dependent on me and others for transportation. I do my best to encourage him and we go shopping and to the movies and church and just try to be as normal as possible. I don't know how to help him right now and I am very scared I will lose him before we get through the dialysis and getting a new kidney. I'm not ready to lose him at this age (57). We had two weddings to go to today, but did not because I had been sick on Friday, because I knew it would be too much for him, but mainly it is just too hard to watch people getting married when I feel like my marriage is about to be over.

Yes, I am mad at my husband for not taking care of himself like he should have, but I don't want that to get in the way of the time we have left. I need to find a support group, not counseling. I've done that. I need to talk to people who know how I feel and can help me see past all the doom and gloom. My husband needs people like himself to talk to as well. Can you help us find a group that meets at night? When school starts, that is the only time I will have.

Moniteau County, Missouri


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Name: Dorothy Butler
Date: 07/11/2013
Time: 12:24 PM


You are not alone, I too am taking care of my husband and this is the tenth year. He has dementia and I feared his death because he has had many fainting spells. I have to give my grief, hurt, anger, fear and all concerns to God. When I pray honestly asking God to take my problems and help me to be the best caregiver I can be and to take care of myself, I get relief. I also have a 46 year old son who is on dialysis three days a week and is on a kidney transplant list. He is legally blind, a diabetic and has back problems all because he did not take of himself. He lives life as fully as he can with his wife and enjoys his grandson. Life does go on. My advise is to accept the limits you must place on yourself and enjoy all that life can offer you at this time. No one knows how long he or she has to live so stop dwelling on the life expectancy of your husband. Plan your days and do not over exert yourself. Don't look at what tomorrow will bring, but plan tomorrow with things you can enjoy doing and be content. It is hard to get support groups that meet weekly, but you may be interested in getting into a church prayer or study group where you can be open with discussing your concerns or just get one good friend or relative you can talk to regularly and occasionally have a day out together.

Name: Jane
Location: Kansas City
Date: 07/10/2013
Time: 07:19 AM


Dear Overwhelmed: You have a big job to help your husband but also to help yourself. It is overwhelming if you let it be. The first thing I can recommend is to find a way to set up your daily life to let you have some downtime. One hour away from caregiving doing something that relaxes you. You know what that is: gardening, taking a walk, sleeping, reading a book, etc. Tell your husband that this is your time off and he should do everything he can to not ask you for help during that time. If he can't abide by that rule, find a way to leave the house -- even if you have to get a friend or neighbor to stay with him during that time. YOU NEED THIS TIME AWAY TO KEEP YOUR SANITY. Next, call the Area Agency on Aging that serves your county. Ask them for a caregiver support group near you. Central MO AAA is located in Columbia, MO but probably has a staff member that will know the resources in your county. Your husband is too young for their services (has to be 60) but they will know resources. Next, contact the social worker at the Dialysis Center to see what help is available for other needs you have, espically respite care and possibly transportation. Hope some of this helps you. You cannot continue to provide care if you don't take care of yourself first.

Name: Janice "Gypsy" Hendrixson
Location: Titusville FL
Date: 07/10/2013
Time: 04:40 AM


I so understand fully! My husband was already above knee amputee when we met, married in 93. Viet Nam Navy Vet. Always dealt with this, lots of surgeries, etc...April 2011 throat cancer...3 surgeries, chemo, radiation, MONTHS total in hospitals, ER, nursing home, etc. HAVE NO FAMILY IN THIS TOWN AT ALL, moved from Texas, 1200 mi away! Homesick always! No help...Florida is a very rough place to live...NO HELP! In a rent house...had lived 8 yrs in campground prior in RV! Sigh. He lost...voice box, lymph nodes, hole in breathe...lost hair, eyebrows, beard, weight dropped from 180 to 135! Shrunk 2 inches in height! Wow, the changes! He is 66. I am 68. He is also hooked up to a pump feeding tube 24/7!!! We do not go out to eat of course, I eat meals..ALONE. I sleep...alone. He is in a hospital bed they brought in...another room that has TABLES of meds, supplies, tubes, gauge, mucus machine, breathing machine, the IV POLE, etc. No social life. Holidays mean NOTHING. Depressed...20 yr anniversary is July 23, same day his birthday...I know we will be isolated in this little house, doing NOTHING. He mostly sleeps all day. I feel SO ALONE. I am a Leo fire sign...used to be outgoing social. Not any more. Gave up EVERYTHING! I cannot even leave house for 30 minutes, no one watching him...I worry he will collapse in mucus, blood, choking on it like times before! Is hard to take him WITH ME to do short shopping trip I MUST DO. I have had to take over EVERYTHING! My own health not good...stroke, back, knees, diabetes, etc. I stay depressed...a lot. Cry...a lot. Life feels hopeless, useless. In a way I do resent he got SO SICK with cancer! Like most men, did not take good care of himself younger...smoking, drinking, etc...4th marriage each. Seems we women end up the CARETAKERS? Our lives...on hold always! We make the sacrifices and I notice...caretakers also become INVISIBLE PEOPLE. He lost voice box, so I must interpret for him...doctors, nurses, etc. and do double phone duty...he cannot use a phone. Going on 3 years of this!!! I have days I want to scream my head off! Rip out my long hair!!! Run away! But...I cannot. Al this feels so unfair!!! We are Harley bikers and now that gorgeous trike mostly sits in the garage, sigh!!! Missing out on events we USED TO DO with combat vet biker chapter! Sigh. I feel like life is just...passing by. I feel jealous of people talking about eating out, trips, going to beach, riding their bike, all the things we USED TO DO and cannot do any more. I worked hard all my life, single mom, divorces, etc but CARETAKER is the hardest job of all, extreme stress, worry, and NEVER A DAY OFF!!! And no pay for it either!!! Am I wrong to feel so resentful secretly??? This man seems helpless. I no longer "feel" is more...patient full time and me...caretaker/nurse and 20 other jobs, sigh. No time to drive to and sit thru support groups either...I am HOMEBOUND here most the time! Just time for a shower or eat a sandwich is now a LUXURY!!!



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