Caregiver Stories

The following are true stories sent in by today's caregivers.

8/22/02

I am an only child, and I am the care giver of my mother. She has CHF, is legally blind and very hard of hearing. She also has mild dementia, has diabetes, and has had 3 strokes and numerous heart attacks. Sometimes it is overwhelming to try to keep up with all her needs and hold down a job. But I wouldn't have it any other way. I feel she raised me and gave the best life she could, and now she needs me and I want to know that she is taken care of. It is just hard at times. I have no life anymore. People just don't understand what's involved, so it gets very lonely at times. Because my 90-year-old mom can't hear or see, she gets very depressed. I am right now trying to find things I can give her to eat so she can stay independent and feed her self. Thank you just for listening. Sometimes just having someone to talk with helps.

Jackie
Jami527@Hotmail.com

7/29/02

I am the care giver for my mother. She is 83 years old and the victim of three strokes and CHF. She was hospitalized in November, then released with hospice care, then discharged from hospice care in February.

The hard thing is knowing that I have to watch as her condition fluctuates. I also have a hard time with having to redo all my decisions based on her care. I had to buy a car that could accommodate my mother. Then as she went downhill I had to stop planning things (such as attending birthday parties, etc. because there is no one to sit with her. My whole life has changed. I am now like her mother and not her daughter. It is very frustrating and I feel alone sometimes, like no one understands!

Kheller
RKheller@adelphia.net

7/8/02

My mother is 82 years old and still lives in our family home. She has developed macular degeneration and is nearly blind. She is unable to drive, cannot read and can barely see the TV. She wants very much to continue to live in her home, which is rather isolated. She has a wonderful neighbor who takes her grocery shopping and runs other errands with her, but she is a mother with three young children and cannot be expected to take on my mother as well.

I have one brother who lives near her, but over the years she has been so nasty to his wife and to him, that he is unwilling to take on much responsibility for her. Her other children live out of state and have been trying (via long-distance) to help determine how best to help her. She is depressed, but refuses help of any kind. We do not believe she can safely continue to live on her own, but she refuses to consider selling her home. She insists we are trying to force her into a nursing home. We are NOT, but we are afraid that she will seriously injure herself. At this point, we have her set up with an emergency lifeline, have someone who will come in once a week to drive her places and help with her mail; we have set up a bill-payer with her bank and have replaced the roof on her house. At this point we are at loss of the next step to take. Any suggestions for additional help are met with arguments. Frankly all of her kids are ready to throw in the towel!

Marguerite Leishman
mleishman1@aol.com

7/8/02

Reading some of these stories makes me feel guilty and foolish to complain at all, but nevertheless, here's my story: I now live with my 78-year-old mother, who was doing pretty well aside from some occasional short-term memory loss -- until a couple of years ago. The memory loss problems started to worsen dramatically. After testing, doctors don't believe it's Alzheimer's, but can't be sure at this point. I have gradually had to "take over" (despite her initial fierce resistance) pretty much all of her financial affairs. I came home one afternoon to find that she had been visited by door-to-door solicitors who convinced her to sign a contract to have her house painted for $4,000! She had given them her credit card number. It took me many phone calls and letters, but I was able to get her money back after a month, with the help of the Attorney General's office and her credit card company.

I started to notice she was more and more reluctant to go to the grocery store a mile away (she still drives), and so I do most of her grocery and other shopping now as well. I have to remind her to take her meds (thankfully, just thyroid medication and vitamins), remind her sometimes to eat, making sure she eats enough healthy foods. She has slight incontinence, but refuses to wear pads. She often wears the same clothing from day to day and I sometimes have to sneak into her room after she falls asleep to take her clothes out and put them in the laundry room so she won't wake up and wear them yet again.

There is the oddness to some behaviors, like the fact that she accumulates "piles of stuff" around her where she sits in front of the TV -- magazines, newspapers, junk mail, food wrappers, needlework kits (which she rarely works on anymore), pillows ... just "stuff" piled on either side of her on the couch that will sometimes come sliding onto the floor like an avalanche. When it reaches that level, I wait until she's asleep and then set about clearing the area, tossing the trash, "tidying" the piles ... I don't know what that's about.

Sometimes just a small thing can hit me with a huge impact -- tonight, I was out of toothpaste and was going to Mom's bathroom to use some of hers. On my way, it hit me that I couldn't recall seeing her brush her teeth for awhile, and wondered if she even had toothpaste. She didn't ... and I have no idea how long she's had none. It just hadn't yet occurred to me that she would need toothpaste and not get any for herself, even though I've been buying toilet paper and cleaning products, etc., for some time. It seems like there's something new almost every day to realize or to deal with, however small. At 50, I'm divorced as of two years ago, childless, and trying to reestablish myself financially, and pretty much start over again at mid-life. This is difficult enough in itself, and having to deal with aging parent issues at the same time can be stressful and worrisome. My sister is 1,200 miles away, and would be of no help in any event. My older brother is only of minimal help, so it pretty much falls to me. I love my mother deeply, and want to do whatever I can. I don't know how much worse it will get, and I only pray for the strength and the means to handle it all as it comes.

My prayers are with everyone here who deals with all caregiver issues. It may be that our only consolation is knowing we are doing God's work -- doing the right thing, to the best of our abilities, and that has to be enough.

Juli
pucelle@mindspring.com

7/1/02

Hello! Currently, my husband and I are taking care of my father. He just moved into our home because he was not able to care for himself. I did hire a nurse. However it was pretty costly, especially with the cost of medication. Sometimes it gets hard and stressful, but I did not want to place him in the nursing home. I glad I found this web site to gain support and services.

Kimberly Cobb
KimCob@msn.com

6/27/02

I am "just the granddaughter." My grandparents raised me and my sister/brother. My parents, separated when we were young and did their thing. Right now they are in their 80s and, for the most part, healthy. My grandmother has 3rd stage Alzheimer's They are in a skilled nursing facility. My mom signed them away as far as I am concerned. We have not spoken in a year; I have gone to court, and of course, they told me that I have no rights. I realize today that they are getting their daily care needs met. But I feel so very frustrated and I know that my grandfather is hurt, because my mom is their only child and she never visits and naturally he gave her power of attorney over their assets. I go visit and make sure they have the extras the need. I participate in my grandmother's baths and do her hair. I try not to beat myself up. Needless to say, I am not speaking to my mom. I know I will need to. I just don't understand her and how she could do this. Her parents were so very good to her all her life.

Lisa
drcelj@hotmail.com

6/24/02

I am 34 years old; about 6 years ago my husband fell and injured his back, which left him with a permanent injury to his spine and unable to work. We have two wonderful boys. Two weeks after my husband's surgery I was called by my mother; she and my dad were in a small car accident. My dad forgot how to drive. He was diagnosed three days later with the beginning stages of Alzheimer's. At the time I was only 28 years old. My husband disabled and my dad sick.

I made a decision that would change all of our lives and change who I am to this day. I have emanated to keep my dad home with us. He is in his last stages of Alzheimer's. It's a very sad thing to watch every day. My dad was a military vet, retired from the army after 35 years, worked on the railroad, a very independent dad. Now he doesn't know who we are or how to do anything anymore, even talk. My boys adapted very well with education and counseling. My husband takes the morning shift, 4 am to 1 pm. I work 40 hours a week. Then I come home and take care of mom and dad.

Andrea
andread898@aol.com

6/20/02

My mom was diagnosed with a brain tumor at the age of 72 in February 2001. She immediately opted for surgery, had a great doctor and everything went according to the text books (easy removal without too much trauma), but it was found to be cancerous. Up to this point, she and Dad were vital, active people always on the run.

After a period of treatments, mom was doing really well, had made the trip from Florida to Ohio (where I live) several times, was enjoying her life; her hair had grown back - and then she was struck down again. She required more brain surgery. Due to some really horrendous treatment at a rehab center, she never fully recovered. She passed away on Christmas morning 2001.

I am an only child, with a daughter and a grandson. Both my husband and I work full time. I have a one hour commute to my job. My mom's mother is still alive and kicking at 96! There are care issues abounding here; my grandma is in a nursing home and hardly any of the rest of the family visits her. My dad is trying to move up from Florida, refusing to give up ANY of his stuff. He's diabetic and has not been taking proper care of himself due to taking care of my mom, and stress and the grief of losing her. When I ask him if he is eating properly, he gives me some lame answer about having packed all of his pans. He doesn't have any milk, and on and on. My dad has always been very controlling and it hasn't really stopped. He stayed with us for 10 weeks trying to get his new home ready and it nearly drove my husband and me crazy. I truly love my parents - we have always had a wonderful relationship, but not wonderful enough for him to live in our house. I turn into the child again and he is in charge of TV, social events, etc.

My husband and I virtually did nothing but live for him when he was here. He has a dog (we are thankful for that, but) that does not get along with our dog (who happens to be the princess) and they fight all of the time. He and mom had purchased a home near us shortly before her relapse and we were just waiting for her release from care to move them up here, so he has a brand new place to live where memories of mom won't haunt him as they do at the old house. We are hoping against the odds that he will regain his composure when he is settled there so that we can all live normal lives. To make a point about how controlling he is, he had a diabetic episode at our house where his sugar level was only 26 and three adults (my adult daughter was also there) were having one hard time deciding if we should call an ambulance because we didn't want to make Dad mad. He is also of the frame of mind that if you don't think a suggestion of his is absolutely the best....he gets really upset and basically tells us not to bother with him anyway. Don't get me wrong, he is caring and loves us very much, but we must do what he says or he gets obnoxious. So I have a tremendous load of guilt and fear (fear that I will have to move him somewhere against his will). I am just kind of lost, scared and guilt-ridden. We don't mind helping him get settled, cooking meals for him to have at his convenience (if we can get him to use the microwave - he also insists that he can't learn anything). So if anyone has any suggestions or stories to share, feel free to e-mail me. Thanks for letting me vent.

Kay
davidandkato@earthlink.net

More caregiver stories