Caregiver Stories

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

5/3/02

I am sole caregiver for my husband, age 70. We have been married for 51 years. My husband was always very healthy, bright, assertive and I would never have believed that our retirement years would have been like we are now. My toughest problem has been to see the essence of him and his personality slowly and relentlessly ebb from him. He no longer is my husband in the truest sense and has become a beloved person whom I am having to learn to love for the one he is now. I can't really sit and contemplate all the ramifications of and the future of his disease or I would not be able to function. I take one day at a time and really do not dwell on the horror of it al. My grown children, five of them, are very supportive, try to help me to get a respite once in awhile, and that helps a great deal. The isolation and loneliness is always with me. I have an internet Alzheimer's support group that has been like a lifeline for me as they know exactly what I am going through and can give support.

Joyce Yates
jbunnyy@hotmail.com

5/3/02

My husband was diagnosed with PSP (Progressive Supranuclea Palsy about five years ago. This is the same disease that Dudley Moore died of a few weeks ago. He is only 73 and this has robbed him of his coordination, his speech, his swallowing, eyesight, and more. He cannot do anything for himself. I am 77 and take care of him full time. I only have 1 1/2 hours of a health aide three times a week. It is very difficult, but I took a well-needed respite of six days in February and put him in a nursing facility for $1,500 so that he would be well taken care of. Well in those six days he had two visits to the ER. He fell out of bed one night and his catheter came out and then two days later he fell out of the wheel chair and had seven stitches in his forehead. So I will not put him in a nursing facility again. What I need is more help, which is so hard to get. I would also like to chat with other caregivers.

Yvonne Rustico
yvonnerustico@aol.com

4/28/02

My mother had pelvic floor reconstruction in April 2001; I took off six weeks to help her, as well as my homebound dad. She is 80 years old and the surgery left her still incontinent but, in other ways, much better. She has strict limitations she must adhere to, so I made myself available to help.

In August 2001, my 80-year-old dad with mild Parkinson's had a cervical discectomy; six hours after the surgery, he went into respiratory distress, was in ICU for 60 days; on a vent, then trach; couldn't speak or eat. He then went to rehab; came home in October on a feeding tube - supposedly due to complications of the surgery.

My mom is his primary caregiver but I help quite a bit; my mom and I inject liquid food into the tube at night, which he is on for seven hours; we also have to crush medications and inject them with water in the tube four times daily. Mentally, for me, as well as them, it's difficult to see someone who could eat and drink one day, not be able to do so since. I had to quit my full-time job in July 2001 with the intention of being available for my parents before my dad's surgery as well as the recovery after. Well, after he became a critical patient, my priorities shifted and my time was spent communicating with a stream of specialists, as well as taking care of my mom. I do have a brother who helps occasionally; I know he loves our parents but his availability and sensitivity are not to be depended upon. I am now in a position, mentally, where I need, financially, to be working but my parents' needs are so great that I find it hard to separate myself from them. I have a family and they are supportive.

Thanks for reading.

Nancy Dreher
hnybunch310@aol.com

4/27/02

My mother fell in the street on August 10, 2000. She has a brain injury due to the fall and is in a nursing home. I am an only child so all the responsibility falls on me and my two children. I never realized a fall could do so much damage. She knows me most of the time but her short-term memory is not good and she does not remember my birthday or hers. That is hard for me to understand. She has lost a lot of her long-term memory also.

Any one who thinks it is easy putting a parent in a nursing home is mistaken. That was one of the hardest things I have had to do. I had promised my mother she would never have to go in one and I have a lot of guilt about that.

I feel like I am in a no-win situation. To make things worse, she cries a lot and that upsets me.

I have read as much as I can on TBI, but I still have a hard time understanding what is going on with her and myself.

My children have been very helpful with visits and other things as much as possible, but they have their own families to care for and they know they may have to face the aging process with me and their dad in the future. I know that must bother them. I could not do it without them but it hurts me when I hear my daughter leaves the nursing home crying when she goes to visit. Not sure what I can to about that, she still takes her turn going.

I always thought it was awful when people did not visit their loved ones in a nursing home situation but not any more, it is very difficult going and seeing her so miserable. I will not judge anyone decision anymore.

Thanks for listening.

Katie Smith
ksmith3594@aol.com

4/25/02

How do I keep a good relationship with my siblings? There is a strain between us.

Charlotte Hanebuth
cdhanebuth@att.net

4/21/02

I am 25 years old , youngest of three daughters of Ms. Matilda Davis, a 58-year-old who sufferers with Alzheimer's disease. I am also her caregiver for now, it is sad to say. But it is a struggle because I am pregnant with a 7-year-old son and because of my mother's condition I can only work about three days per week. I currently have my mom in adult day care, which is very helpfull but also expensive. For now this is my story.

Doreen Morales

4/19/02

If I should live old enough to retire, the following is the greatest gift I could give to my son:

I will sit down with him and share my goals for my future as an aging parent. I will enjoy downsizing my living quarters and personal belongings so that I will have time to travel and enjoy life. I will put my finances in order, I will secretly plan for my passing, and I will enjoy and appreciate all the time my son and his family are able to give me. The goal of parents is to leave this world with their children successful and happy. To deprive them of this because of our unwillingness to accept our growing old and someday dying and worring about every ache and pain is a failure in our own lives.

My parents, who are in their 70s, and my in-laws who are in their 80s, have demanded more than my husband and I can give, and it has taken a toll on our health, our marriage, our jobs and our every day lives.
I love my son to ever do this to him.

Debbe Makowski
lovebug7489d@netscape.net

4/3/02

I am the caretaker for my 86 year old mother. My sister lived near her for 20 years and looked out for her but moved three years ago and there wasn't an independent living center near where she lived. There was one near me so she moved here.

Over the three years there have been a few ups and downs, but for the most part my main job has been getting her to appointments and picking up her medication. She has always had some short term memory loss which upsets her greatly and makes things difficult for me. But lately things seem worse. I am most frustrated by setting up appointments and having her back out at the 11th hour. Today she was to have an MRI. She has been very hard of hearing since childhood so we communicate a lot by fax. Anyway, I got a fax early this morning saying she wasn't going to the appointment and it wasn't my problem. Well, of course it is my problem, because I arranged my work around taking her. A month ago she refused to have a tooth pulled. Today I think she couldn't remember what the MRI was for, got afraid, and decided to dig her heels in and not go. When I went to get her for the dentist appointment, she left her room and hid in the dining room of the facility where she lives.

I hired someone to help her with dishes and laundry. When the person came to help her she hid from her! Luckily the woman persevered and coaxed her back to her room. My mother thanked her, paid her after three hours, and told her to return. The following week my mother couldn't recall asking her back, said she didn't want her, and there I was again with a decision reversed. I am suspicious that her medications are contributing to her confusion of late but her doctor doesn't seem really versed in meds for geriatrics. It is all so stressful!

Barbara Brown
barbarab95959@yahoo.com

3/27/02

I just found this site. I am nearly out of my mind. My mother is becoming confused at 76 and her husband of 27 years has severe dementia. He is going to be going home with my mother from a nursing home this Saturday. I don't know how to deal. They have no money.

I am a single mother of two and have dedicated my life to my children. Now this. Do I stop living? My mother is not a very pleasant person and to live with her or her with us, first of all, is impossible right now; but if it works out, it would drive my children away.

I cannot abandon my mother even though I could justify it by her actions towards me all my life. Some years she was there, other years she totally shut me out. But she is my mother. She has NO ONE but me.

What on earth do I do? When her husband comes home I cannot imagine what it will be like. She is having a difficult time taking care of herself. He cannot tie his shoes nor go to the bathroom alone (he must be led).

I keep thinking this might just all go away. Well, you cannot imagine some of the thoughts I hate myself for thinking which come up.

Any suggestions would be appreciated. I work all day, oftentimes 14 to 16 hours, then come home to my children. I feel so useless in all of this.

Thanks,

Darlene Dowling
darlenej@comcast.net

3/26/02

I am the youngest of 8 at 36 years old. Eleven years ago I cared for my mother before we lost her to breast cancer. Three of my siblings helped briefly.

A year after my mom passed away, I met and married my husband. He is 52 now, making him 15 years older than I. He has two boys that were young then and are 17 and 19 now. They live out-of-state with their mom. Nine months ago, my dad had congestive heart failure. I flew 1,000 miles and moved him to California and in with us. My husband has at times been supportive. But now he wants to leave me. He wants me to choose between him and my dad who still can't completely care for himself. I feel I've tried everything to give my husband more attention. My seven brothers and sisters don't even call. The strong woman in me wants to care for my dad until he's gone. As I know you don't get a second chance. Until you lose a parent you don't know. Help.

Annette
annettefitz@msn.com

3/25/02

Hello - I know that my story is not unique. I am the step-daughter of aging parents, one of whom is now in dementia and possibly heading to Alzheimers. We are still having this diagnosed. I continue to wonder about the quality of my life when I'm continually involved in the drama of the illnesses of the dementia parent. I have other siblings but they haven't jumped in to help out.

My mother is still holding on to a measure of independence, although the caregiving is wearing her out. I know that she needs a support group and so do I. I live in Northern California in the Vallejo, Napa area.

Thank you for any help or suggestions that you can offer.

Johanna Ward
jnwa@aol.com

3/18/02

My 74-year-old mother has been living with my husband and me for 10 years. She has never driven and when my Dad was alive she was totally dependent on him for everything; taking her shopping, to all her doctor appointments, whatever. My mother is also bipolar (with other mental problems thrown in just to add to the excitement). My older sister died in 1975, so I am it! No one else to take care of her. I am so tired of my life totally revolving around hers that I was just about ready to get in my car and drive away and never come back. Of course, I would never do it, but sometimes it is so tempting.

Everything revolves around her. She doesn't provide any financial support to the household (although she occasionally buys things for the house). She doesn't clean or cook. She washes dishes, but they are so dirty when she gets done I have to re-wash them. I have to work and when I don't, I don't get paid. My mother will not have anyone else take her to her doctors appointments or if I had someone else take her, she makes my life miserable. She was asked one time by her psychiatrist why she had me take off of work to take her to all her appointments; why don't you take a taxi? Her response ... How will they know how to get there? AND Only if my daughter follows me in the car. SO, what's the point.

It seems like all I do any more is take her to all of her appointments. She refuses to try and coordinate appointments so we can do some of them on the same day. She's had eight this month and the month's not over. I'm just wondering if anyone else has the same type of situation and how they have solved this problem.. I know part of the solution lies with me, but I don't know if I can live with her complaining when I try to stop her controlling me. I feel like it's a no win situation ... I feel helpless.

Sue Scott
suzyq97439@presys.com

3/16/02

I am just getting prepared to take care of my mom. She will be 83 this month. She does not understand about meds and is getting absent minded. I am lucky that I only live about 200 yards from her. This is a new experience for me and am trying to get contacts before it really starts. Thanks.

Arlene
acspringstead@attbi.com

3/4/02

My father-in-law is 84 years old and lives with my husband, my 2 year old son and I. He and my husband have been living together since my husband's mother died in 1981. I entered the picture in 1991. My father-in-law's health is relatively good, but he practically has to be hog-tied to go to a doctor (he has been twice since he was released from WWII). His eyesight is going, and he has refused to submit to any tests or procedures which might arrest the process.

He has a tendency to be very self-centered, and my husband has probably catered to him too much, so now
we have a negative, irritable, demanding, unpleasant monster in the house that is creating so much tension! He will knock on a closed bedroom door or interrupt quality time that my husband is spending with our son, just to get attention himself. He nags and hounds my husband constantly, expects to have everything done for him even if he might be able to do it himself, and refuses to allow anyone else in the house to care for him. It is now to the point that he probably should not/cannot be left alone overnight but since he refuses to let anyone else in to care for him, he obviously expects my husband to work full-time and play nursemaid to him.

My two sisters-in-law who live about 140 miles away refuse to help at all, even to help talk to their father about the fact that he needs help, so not only does my husband have to tend to all of the day-to-day care that they don't,
he also has to be the bad guy so they can come out smelling like roses. My father-in-law is becoming increasingly rude and insulting to my husband, and scolds him if he's out longer than my father-in-law wants him to be. I thought maybe we could see some improvement if we could just get someone in to care for him, but he is so nasty and negative around the clock, I don't think we can have a normal, happy home until he's living somewhere else.

The hardest part is seeing the effect on our 2-year-old son. This is certainly a lesson to those around us to never be such a burden to your children. Who could want to leave that kind of lasting memory?


stefanie_friedman@ocli.com

More caregiver stories