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

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

6/14/02

My 85-year-old widowed mother has finally decided to move from her lifelong home 6 1/2 hours way from me to my area this August. She broke her shoulder last year and it was a family crisis because three out-of-state siblings had to take care of an emergent situation. She healed remarkably well after eight weeks of complete immobilization and physical therapy, but it took the wind from her sails, depressed her to have to be bathed by her daughters, etc.

Has anyone read an amazing book called Another Country by Mary Pipher recommended to me by a psychiarist? It addresses the emotional needs of the elderly and touches on a lot of topics. What so many of you are living through is so heroic. I have no doubt you will be rewarded in making the Fourth Commandment part of your daily struggle. I think my role as a care giver is just starting. I am in my mid 40s and have no kids, but a wonderful husband.

Babs

6/8/02

My father passed away two years ago. At that time my mother had never lived alone in her life. My brother and sister and I wanted her to know that she wouldn't have to live alone if didn't want to. Two months after my father passed away my mother started saying things like I can't live alone, I don't want to live alone, I am afraid to be alone. At that time I was the only one without a family at home. My children had all grown and were on their own. And I was divorced. So I moved in with my mother.

Things were okay for about six months. Then my brother, sister and I started noticing that my mother was shaking and shuffling her feet. She kept saying there was nothing wrong and would not see a doctor. I was having problems and had an appointment to see a neurologist. So at that time I told my mother that the doctor wanted to see her and talk to her about our history. I now see this neurologist every three months.

At that time the doctor told my mother that she felt there was something wrong. After testing it was determined that my mother has Parkinson's. Medication seems to be helping to some extent. But her recent memory has become a major problem. It seems that when we talk to her and tell her things the next day she doesn't remember. And starts fighting and arguing with us. Every time we say anything to her she says that is not what we told her. It is becoming a major problem. My brother does what he can to help. My sister lives out of state. And with mom living with me, I receive the brunt of her anger.

I am becoming depressed and not sure what to do about this. It seems now that nothing I do is right and everything I say is a lie. I do have health problems of my own, which are not helping. The memory problem seems to be getting more and more pronounced. She also has a couple of other problems that she refuses to see as problems and won't see a doctor. My sister is a nurse, so I keep in close contact with her. But I see no way to force my mom to see a doctor. I was hoping that others may have some suggestions or answers that I might try to make this situation a little easier. Right now I think there may be something else medically wrong with my mom but don't know what to do about it. And other relatives have seen these problems and made suggestions to her but she still refuses to see a doctor.

Yvonne Valentine
yvonne@lemoorenet.com

5/18/02

I am caring for my husband who is 72 and has mid stage Alzheimer's. I am 65, very healthy (I jog two miles a day) and we had a very active life together. This disease has hit us like a ton of bricks. I miss my old life and the husband I shared it with. All my time with my husband now consists of "doing things" for him and I feel smothered. I am sure my story is not unique at all but it seems as if it is to me. I guess I just miss my husband and know that he will never be back again.

Carol Apffel
fcapffel@houston.rr.com

5/16/02

I am 36 years old, married, with a 7-year-old girl. We live on a farm with my mother, who is 81. She has chronic leukemia, congestive heart failure, high blood pressure, etc. She is currently recovering from pneumonia, which has left her very weak and in need of bladder catherization several times a day. My husband and daughter are very supportive, but my older brother and his family think that all they need to contribute is her supper a few nights a week.

My main problem is that everything is in her name on our farm, and because of increasing paranoia, she refuses to have anything taken out of her name. (I have lived her since my father's death 18 years ago when I was 18, we have never been seperated.)

Now, I worry that if she should become beyond my ability to care for, she might end up in a rest home, which would take my home. If you have any experience in legal matters of this sort, please contact me. Any advice would be appreciated.

I would also like to talk to someone who is experiencing similar difficulties with caring for an elderly parent. I need the support.

Patricia Bright
Robinsnestfarms@aol.com

5/12/02

My mom is 85 years old. She has been in a nursing home for the last five years with Parkinson's Disease. I was a "menopause baby" and am only 41 years old. She is the most precious mother a person could ask for. She developed pneumonia a little over a week ago and doesn't seem to be recovering very well. I'm writing this knowing that today is our last Mother's Day. I want to be with her every moment, but with a husband and three children I can't. I go the the nursing home every day at noon to feed her lunch. My older sister (who is 65) goes at 5 to feed her dinner. Momma and I have always been very close because my Dad died when I was 4. I feel like I'm living a horrible dream. I can't seem to concentrate on anything. I even have to fake it when my children come home from school to share their accomplishments with me. I feel like a light is going out in my soul.

Janie
lcyost@telocity.com

5/12/02

I have been my mom-in-law's caregiver for some time now. I take her to doctor appointments, of which there are many, to making sure she follows her diet. She is a non-compliant diabetic, she is also non-compliant with taking her meds. Her diagnosis is COPD, CHF, diabetes, pulmonary hypertension, depression, osteoarthritis, macula degeneration of her eyes, glaucoma, incontinence, and sleep apnea. She has a pacemaker, a stent in her heart, has had back, knee and, ankle surgery; she has had a total hysterectomy, and gallbladder surgery. SOOOO.....as you can tell, a bundle of physical and mental problems.

She at one time saw as many as six doctors at one time. It was too much. I asked her primary physician what we should do about this. He could not believe it. He said he would take over all her care and only send her to a specialist if he felt the need to. My mom-in-law and I have had allot of fun together, but her physical health now has her in a nursing home. They call here every day wanting to know something. I go to see her every day. Her son, my husband, and I, and our children are about the only family contact she has. My brother-in-law, her other son, does not go to see her. We still don't know why. We even had a birthday party for her at the nursing home and he was not
there; his family was but not he himself. He conveniently said he had to work. I even asked him when a good time would be to have this party and we went with what he suggested.

So she has none if any contact with her oldest son. I think this has also added to her depression. I just received a phone call from the nursing home and they want her to wear briefs instead of a pad due to her increased incontinence. Apparently she tells them "no" she does not want to wear them. I am not sure why. Well, I guess my husband and I are going to go to the nursing home now, so I will end my story here with: Can anyone give me some advice I can use. Most advice I get is "It will be all right in the end, just give her some time to adjust." Or "you know what nursing homes are like; you put your loved ones there to die." I think she is on too many meds, but no one seems to want to reduce them; 28 different meds at last count. Please help us. We did not place her in the nursing home; her health did. The doctors recommended it. How do we let go of the guilt.

Thanks for reading my letter.

Deborah Cox
Deborahcox40@hotmail.com

5/8/02

I am 59, a breast cancer survivor, suffer from fibromyalgia, sleep apnea, gerd, high blood pressure, depression, osteoporosis and arthritis.

I take care of my husband Rufus. He was diagnosed with AD in 2/99. He has advanced AD and depends on me for all of his care. He is incontinent and cannot do the simplest things for himself. I care for him 24/7 with no relief. I have no health insurance because I am too young for medicare and not poor enough for medicaid. My medications are very expensive. I feel that the State of Ohio should follow the example of California and provide a salary for caregivers.

Hiltrud Stollings
hiltrud@earthlink.net

5/7/02

I am a nurse (retired) and am the caregiver for my husband (age 54), recently diagnosed with Alzheimer's Disease. He is a Vietnam Veteran and has been working as a physical therapist for the past 20 years. He now is on the receiving end of care and this is quite difficult for him to receive rather than give all his life. He keeps telling me how lucky he is to have such a caring and loving wife . I am happy that I am able to do whatever it takes to keep him as happy as he possibly can be.

I know things will get alot more difficult and trying for the both of us; but we will work through this. We have such a special and precious love that few couples ever hope to find. We have been truly blessed.

Thank you.

June Myers
juneal333@msn.com

5/6/02

For the past year and a half I have had to deal with my mom starting dialysis and going into renal failure. To add to her problems, she also has congestive heart failure. I tried to keep working, but due to doctors appointments and dialysis 3 times a week I have had to shut down my business. My brothers and sister believe that it is not their responsibility. They believe because I am single that I have no life and I don't need an outside life. Now my father has had a massive stroke and I have them both to deal with and my savings are gone and I don't know what I am going to do. My bills keep coming in and I can't work because I am so drained. I need help but I keep running into brick walls. If you have any idea how I can solve this problem, I sure could use the help. I live in a small country town in Alabama. Please help, any ideas are welcome.

Thanks.

Debi DuBose
dad_57@hotmail.com

5/5/02

My mom, now 81, came to live with me seven years ago because she was not eating well and was exercising poor judgment. After some time she was diagnosed as having Alzheimer's Disease and Dementia (AD). Over the seven years, she continued to deteriorate, and now she is no longer able to function on her own at any level. She is incontinent; has very poor judgment making her safety a major concern; she won't eat or bathe unless reminded; and she becomes exhausted with the least amount of exertion. She has very little short-term memory; is confused and disoriented; and can no longer follow a subject well enough to read, watch TV or even have a conversation. I retired early almost two years ago and have provided her almost continuous care. It has been exhausting and depressing. I have lost my mother as the person I knew and I felt like I had lost most of my life. I had to go on antidepressants to get through the days. I finally insisted that my sister take mom for awhile as I could no longer do it.

Kitty
msreber@hotmail.com

5/5/02

I am the only child and now provide 24/7 care for my mom. She has Alzheimer's and needs constant supervision.
I've been doing this for almost 12 years. This on top of a work-related injury that bankrupted me leads me to believe that it is easier to deal with my mom's present condition than the government agencies responsible to provide assistance. The bureancracy and red tape are overwhelming.
She gets too much from pension and social security to qualify for Medicaid. My ability to continue to earn an income and at the same time provide quality care for her is my biggest problem. Can't our government realize that a program as they have in Canada would be more cost effective? Pay the primary caregiver $1,200.00 a month or pay a nursing home $5,000.00 to $7,000.00 a month.
I have found that dealing with governmental and related support agencies to be very frustrating and a bigger burden than dealing with the disease. For example I am reefed from social services to the Medicaid people who then refer me back. I cannot seem to get straight answers from anyone in government. This in itself puts a bigger physical and mental strain on me as the primary (only full-time) caregiver than dealing with the disease itself. If we can spend millions in foreign aid why can't we afford to care for our own?

Lawrence Louis
res0kfkb@verizon.net

5/5/02

My mother has AD-Diabeties-glucoma, She has been with us since November 2001; she was also here last year for a while, now she is here till God takes her from us.

When she first arrived, her suit case was a mess. We couldn't figure out her meds, so we called the pharmacy. She was very confused at the being here, but after four months she realized she was here forever. That was a big step. She goes from one day to the other never knowing what is going to happen next. But we are getting through it, hard sometimes - very difficult - some days it's fun which is great. Sometimes sleeps all day, which worries me but I understand that is the situation - gets lonely- and then we go out to eat, which is her favorite thing to do, but then is very expensive. We have a long road ahead of us, and God be willing will be there with us. The prayers do help get through the day. I am tired most of the time, and have to stay up to watch. The worst thing is when I'm sick; it's like being a mother, who still has to go on with her daily routine, no matter what the day brings. I could give you all kinds of experiences, but just in six months, there isn't time so if any one wants to know something I will share it with you. Good luck and God bless.

Carolyn
dutchandcaroline@msn.com

5/4/02

My father is 80 years old and is in the end of the 5th stage of Alzheimer's Disease. He is no longer the Dad I once had. He is never happy no matter what we do to please him. He doesn't like where he lives and he doesn't like any foods. He is in a lovely retirement home at the present. I am 41 and have three young children. Luckily I have a sister nearby that shares the load of Dad. My Mom passed away two years ago after 54 years of marriage. Dad's disease was a blessing during this time. My sister and I handle everything for him including finances and doctor visits. It is almost more than we can bare. We are brokenhearted over our father and it is a struggle everyday. This is what they call the circle of life. I am very thankful of what I have including my dear father. My sister and I get criticism from family member that have no clue about the disease. This has made things even tougher on us. We have been told by several doctor's that this disease is tougher on the family than the patient.

Kathy
jkdebner@hotmail.com

5/3/02

I have been caring for my mother and father for the past four years. My mother was in a nursing home for 1 1/2 years and my dad in the same home for approximately four months. My mother broke her arm while in there and then broke her hip. She wasn't given diapers and they lost her teeth, and then they lost the new set I had made for her. Most of the things I had brought to put in her shared room was stolen. My poor dad could hardly walk while in there and they had him tied in bed because he was aggressive. I believe to this day that my mother was sodomized while in there because when I was able to get up enough nerve to bring them home and started clean her. Her rectum looked hideous. I have four siblings who do not help because they cannot deal with it. It is only me and some help from my husband when he gets home from work. I am 53 and my mom and dad are 80 and 81. They are combative and very difficult at times but I am so glad I am doing this because I know they are now being well cared for.

Kris
christine@msn.com

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 helpful 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 worrying 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

 

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