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

12/25/05

My husband’s dad, my father in law, has Alzheimer’s. My husband will not deal with it and I feel like I am left holding the bag. One fear my husband has is making his father mad, making his father angry or having his father get mad at him. That includes any of my doings or actions that may cause or not cause him to get mad. What I mean by "or not cause" is that I think that we may not be able to tell the cause of his getting mad because of the illness.

We now have to take care of him and my husband ignores everything that I do that leads to us to taking care of his dad. He wants to take care of his dad, and says that he supports me in my actions, but he will not do anything that will be or may present a conflict with his dad, such as having him stay the night or when he is in our home allowing father-in-law to leave in a short span of time. The home where he is staying now has asked us to move him out, more than once. We are more than willing to do that but I guess we need support, guidance, education and self help. I guess we have to prepare for a new life with his dad and his illness.

Even today I asked my husband to read about communicating with a person with Alzheimer’s on this web site and my husband got real stressed. I want to take the first step but I guess it's a long road to that first step. I want to do it to help out and take care of my father-in-law. I suspect there have evidently been people who are now and have in the past taken advantage of him. I think we can provide some protection along with the care giving. My husband is very kind to his father and is the obedient and respectful child. Please what can I do? Thank you for this outlet.

Maria D
rdfamily@hotmail.com

12/14/05

I am a young woman with a mother who is in a nursing home after she had a quad bypass. She is only 64 and has three children. I'm the only girl.

She had complications in surgery and had a few strokes on the table. When I was allowed to see her, I was shocked at what I found. She had been put on a breathing machine and feeding tube and she had told me many times she didn’t want that. But I guess my brother made the final decision. Well now she can’t walk and has had brain damage and is confined to bed. She has her good days and sometimes she remembers me but mostly she gets angry and doesn’t know who I am.

I miss her so much. She is my life. It was just she and I growing up and I find myself dreaming of her as she was. Last night I had a dream so vivid I woke up crying and I find myself doing that a lot but only in the morning when I'm vulnerable and can’t control my feelings. The dream I had was a good one and I don’t know why I found it sad. We have lived in Florida all our lives and I have never seen the mountains. I dreamed we drove together and she made me close my eyes as we turned on the road and when she told me to open them I could see the mountains so vividly and I looked at her sitting there driving the car smiling at me looking like the strong independent beautiful woman that I always see her as and I woke up crying. I know she is still here with me, but I still feel like I've lost her. I don’t know why I'm writing this; maybe to find that these are normal emotions and feelings and will it ever get easier. It's been 6 months since the surgery and it’s still very hard. I can’t really talk to my brothers about it. They are older than I and I really didn’t grow up with them. My dad left a long time ago. I visit my mother often but it’s hard to see her like that. Thank you for letting me get this out there and I hope to hear from other people in the same situation.

Rhiannon
reanansshadow@aol.com

12/7/05

I am 35 and single and the only relative close enough and who has the time to care for my grandmother. My grandfather passed away about a month ago and with him gone, grandma is alone. Except for me, her children live far away and as far as the grandchildren I’m the only one who lives close enough (our homes are a 5-minute drive away from each other).

It’s all so new to her, being alone after being married for almost 70 years. She has become depressed but will not admit that, does not eat except when I force her and never leaves the house except when I force her to go shopping. She has lost interest in everything. I know she needs time to adjust and I do everything I can to make it easier for her. I work and go to her house every night, call often, have dinner with her — Friday night is DVD night now — an actual date for me now seems so unlikely.

Most of the time I really enjoy being with her and helping her — thank god she is in relatively good health but so lonely. She wont join any senior centers or even try. She has no friends left (they have all passed away). Her children, when they do call, always wind up arguing and I get in the middle of it. I feel guilty all the time that I go home at night knowing she is alone, but I enjoy my alone time in my own apartment. She has a four-family home and it would be so much easier if I could live in one of the apartments there, but she thinks it would not be right to "throw" a tenant out.

How can I convince her that me living in her building would benefit both of us? I could be right there in a second if there were an emergency and be there just so she knows she is not really alone. How can I convince her?

Thanks so much for letting me get this off my chest. My friends don’t really understand. They just tell me to hire someone so I can have a full life of my own. But she is my grandmother. I grew up with her. How can I turn her over to a stranger? I know she would never agree to that

Joann Zackaroff
joannzack@yahoo.com

12/3/05

After reading a few of these personal stories I know I have it easy.

Easy because my father lives in a retirement home where he is fairly closely monitored and they do listen to me when I have concerns or requests and fill them.

There is no monetary problem.

All my problems are emotional.

My Father was raised during the depression and entered the Air Force in WW II. His father was almost never home due to his line of work but he was also an alcoholic. His mother was not the happiest woman on earth with no husband around when she needed him and his demeanor caused her great heartbreak. So I believe they really never spoke very much and hence they split up when my dad was I'd say 20 something.

My dad married a my mother and they had me. According to some they were very happy. My dad drank, my mother was quiet and patient. My dad was also very negative and controlling, belittled my mother and gave her a royal battle at every turn.

I do not remember a happy moment during my first 8 years of family life. Arguments calmed by police, family quarrelling etc. My mother picked up and left my dad but she more or less had a relationship going on with her boss who was a womanizer to start with. My dad was rampant.

I stayed with my mother until I realized I wasn't very important to her. I would wake up in the night and she wouldn't be there. Long hours waiting for her to come home from work.

I decided to go and live with my dad because his workplace was situated right under the apartment he lived in. It wasn't easy for me living with him ... he tried to make me the woman he lost; he ordered me and belittled me.

Years later as of today I'm 56, he's 85. I can see he is failing.

He is legally blind, he wears a hearing aid in both ears, he has a thyroid problem, he has a pace maker, he has an abdominal aortic aneurysm, he has degenerative bone disease in his lower back. He has prescriptions for everything out of whack.

My intelligence tells me that I should get the power of attorney activated just to enable me to pay his bills at the bank. My intelligence tells me that because he is a war veteran and his hearing problem is on their disability program and I can get every service imaginable for him that I should get an active power of attorney because they are not even supposed to talk to me about him unless that P of A is activated.

These elderly people need someone that can speak for them, which is what I've been doing.

I was air ambulanced with him for surgery just lately as the doctor involved could ascertain that someone blind and deaf should have someone with them. Guess what, my accommodations and meals won't be covered because he's not approved for a companion.

My big question is, Am I going to throw in the towel when the walls I have to climb over become too exhaustive for me? I'm already there. I have no money. My dad could pay for that 100 times over and more but he's too deaf, too miserable, too miserly, too backward, too stubborn (because as you know everything has to be a battle) and I won't even enter a conversation with him about it. He can't even hear me say passing phrases. Anything I say has to be said so many times it loses it's delivery. He says my voice is too high pitched.

Today he's looking for anti embolism stockings. He was given a pair at the hospital to put on. There wasn't a nurse anywhere that could get it done, He's too abrasive. In the recovery room, the first thing the nurse asked me is "how do you shut off this hearing aid?" "Even the surgeon's patience was running out listening to that squealing." I adjusted the aid and said you know what, now that my dad is sedated let's you and me put on a pair of anti embolism stockings, he's supposed to have them on and no one will venture the task. We put them on. Next day I went back to visit .. they were off.
Today he's asking me where they are because he legs are swelling up. Frankly I lost them but I've found them again. I told him because he gave us all such a battle about them don't even think about going back and asking about them but he can't hear and if I yell I get mad inside automatically when I'm not even mad/angry.

I cannot go a day without thinking about things I could do for him to help him. Foot care clinic appointment, getting a physiotherapist, getting her to assess his need of a walker, getting Veteran's Affairs Canada to supply him with one.

Man oh man. I'm a woman of progress and I can't stand anything in my way especially when people aren't using their brains.

I ask you, does a blind and deaf man wear a big sign on his forehead stating his disabilities. Not where I come from. Do you think an ambulance attendant or an attendant in an air ambulance vehicle knows the patient's communication problems? Not mention if he should die on route with no family with him.

I'm caring too much. I'm sure of it. I have to just let him go. I have to just cut myself off from him and not get involved because my hands are tied. And he's tied them, he's not showed me one ounce of genuine love or affection and no inheritance can ever take the place of that. My kids do not go and see him because they can't stand his disrespect and abuse of me. He has made his own bed and eventually he will lie in it.

I'm sure I have said enough but you know what I haven’t; you'd never have a clear picture of this man. One nurse in the hospital was able to get his clothes off for a bed bath. She was the type you don't say no to. I asked her "What am I going to do with him?" (Remember he can't hear.) She asked, does he ever say thank you.
That is a very good question. If someone doesn't say thank you when you do something for him, do you keep on doing it?

Deborah
debjoamca@hotmail.com

11/25/05

Where do I begin? I am the youngest daughter of four children. At my 42 years of age, my parents could be my grandparents, with my dad being 94 and my mother 80. My father suffered a stroke at age 88 which left him with left-side paralysis. He had been walking fine with a walker, but his speech is now slurred and his mobility has been greatly reduced. He has been an alcoholic (drink of choice is cheap wine) and a tobacco chewer for about 40-50 years. Never the destructive or violent alcoholic, but we did experience some volatile moments in our lives at the result of my father's drinking.

Aside from that, he had come to the United States at the age of 17 and worked in the farm fields of Central California before joining the Army. In the Army he served as a chaplain's assistant. He served three years then returned to the States and worked as a cook until he was about 72 years old. My parents have been married for 55 years. He has always been very active, tending to his vast vegetable garden, cooking for his family, bowling, pruning trees and monitoring finances enabling each of his four children to have a vehicle to drive when we received our licenses, allowed us to enjoy small vacations to various California amusement parks, and he has also financed other relatives abroad to come to the States.

After his stroke, he would continue to work his garden balancing with the walker, right hand holding tools. Difficult to watch such an active man, now barely able to stand, but still try to do what he loved most. Within the last few years his mobility began to deteriorate even more, he was falling more, and his reduced mobility made it difficult to make it to the restroom in time. The last two months have been the most difficult. Our mother had back surgery two years ago and is unable to lift, balance, or stand for long. She is now too in early stages of dementia, so she is unable to care for my father like she has done so in the past.

After several sleepless nights due to continuous calls from our mother needing our help to lift our father up from a fall, we decided it is now time to enlist the help of outsiders. Custodial care did help out a little, but the cost is high for the hours needed, and my parents’ meager Social Security earnings do not cover the costs, even with our financial help. Next decision to be made was whether my father would qualify for convalescent care. I've always thought that my father wouldn't make it in convalescent care, because he wouldn't be able to use his vices and he wouldn't be able to be "home." Well, after going around in circles with the medical and social services sectors, my father is now in convalescent care, receiving good care, and he is doing much better, yet the difficulty now is when we visit him. It is heart-wrenching to hear him say how much he just wants to go home and be with all of us. It's like we know he's getting good care, but he can't be "home."

How can we deal with this? It's hard. You never think about this until it happens. The one that cared for you is now powerless, and dependent. This is what's hard on us now, dealing with how much it hurts to put your parent in convalescent care. Does anyone else feel this same pain?

Dinah Forrester
res1nab7@comcast.net

11/6/05

Well, as of yet my story is not horrific but I see the writing on the wall and feel powerless to do anything about it. My mom has lived with my wonderful husband and two beautiful boys and I for over two years. Before this time she lived down in Florida on her own in an apartment. Our family life growing up was difficult mostly because she is such an unbelievably negative, controlling, difficult-to-please person. Being the youngest and only girl, I got much of my mother’s attention and support. She was very pleased and proud to have raised a professional ballet dancer. I was the star in her life. Knowing what she was truly like yet feeling grateful for providing me with a wonderful life I felt compelled to bring her into our home after she had been hospitalized with a COPD exacerbation.

My brothers were not helping her, she refused to spend any of her money on a new car and was calling me complaining all the time about her sorry state in life and the fact that no one did anything for her. I always knew I would be the one taking care of her and I guess I felt it was time. Reluctantly she came.

One of my brothers packed up her belongings and drove her to Chicago, unloaded the truck and left the same day! The next day she couldn’t remember how she got here. She is on 24-hour oxygen, has developed some dementia, which the doctors like to write off as normal for her 75 years. She now sleeps most the day. She does not want to give me power of attorney over her affairs, but her memory is so bad she can’t remember anything about her finances or doctor appointments.

Everything I try to do for her she goes back and re does and screws it up. We make a joint decision and then she reneges. There is no consistency. She bluffs her way through doctors appointments, phone conversations with friends and family members.. I feel if I am to care for her, I need some control. If I don’t get it I’m afraid when something bad happens I won’t be a able to be a proper advocate for her. She always talks about wanting to go somewhere else but she has pushed away everyone else in her life with her nastiness and I am the only one helping her. These days she is pushing me away as well, and I have to admit I am beginning to not want to spend time with her.

I work 25 hours per week, raise my two young boys and try to keep a light-hearted and happy home for everyone who lives in it. She doesn’t leave the house without me and won’t participate in family functions with my husband’s wonderful family. Today I stayed home from one of these parties because I didn’t want to leave her alone. So my two boys and their dad are without their adoring mother and wife. I feel so sad for her but most of her problems are self-created, which she has never been able to recognize.

She had a horrible life growing up in the depression in West Virginia. She suffered abuse, poverty...My father gave her a nice home in Florida but nothing could fill the loneliness and pain deep inside her. I thought being with our very happy family would somehow soften her. I thought she would be happy living out her days here quietly but I was wrong. She is still miserable. Yes, she on lexapro and xanex. Well, thanks for letting me vent. I read all these very sad stories and feel for each and every one of your situations. God bless and keep your hearts happy. As I am only at the beginning of what I fear may be a long saga, I brace myself and know that I’m doing what’s right for her. She would die in a home if we could even afford to put her in one.

Thanks for reading

Kathryn Schumann
kmhschumann@yahoo.com

11/4/05

Hi, my mom is in the final stages of AD. This has been a very trying time for my whole family. Our mom is the backbone of our family. If anyone (grandchild, friends, siblings) had a problem, Gramma would help or listen, or just be there.

I just wanted to know if anyone out there is experiencing the same things we are. She has gone from being the happy mother to crying, wanting her parents (who have long been gone), not wanting to be alone and cranky. She had a stroke in July. The doctors did not expect her to live. They advised us to call the family all home and just be with her.

Well she is still here, in body. Her mind is gone, she does recognize us if you tell her who we are, not sure if she knows that she is our mother. In the last couple of weeks, she is starting to pull her hair and pinch herself, hard enough to make bruises. Does anyone out there know if this is a normal thing? We know the crying and crankiness is all part of this, but no one seems to know if the hair pulling is part of it. Please help

Sharon Phippen
phippens@inac.gc.ca

10/13/05

I have never known my mother to be without some type of pain. She was constantly bedridden, having surgeries that she could barely recuperate from. She was also full of laughter and a resolve to fight these ailments that kept knocking her down.

Growing up as an only child, I was the "helper." I learned to cook, clean and take care of my dad. Mom taught me all her little secrets; how to season food and set a table to spring cleaning and winterizing. Dad was in the Navy, so we moved a lot. Friends were a luxury. School events were rare and therefore special when I could participate. I was never neglected or abused; both my parents made sure they spent quality time with me. They were my best friends. They still are. I was adopted at five days, have always known I was "chosen" and the "child of their hearts." Helping them now is a loving duty that breaks my heart.

I am now 55 years old, have one beautiful daughter and three wonderful grandchildren who live on the east coast while I'm in the west. And while I can call her at any time to cry and bring her up to date on Mom's health, I feel so very much alone.

Mom and Dad are both 85, married for 60 years. When Mom had a massive stroke and heart attack in 1999, she was in a coma for 21 days. Surprisingly she suffered little dementia and paralysis, but you could tell she was fighting to regain ground. She missed reading books as she couldn't retain what she had just read. She took up crossword puzzles and her arts and crafts again to keep herself busy and occupied.

Since then she has had three more small strokes, each time taking precious memories and reasoning. Her blood pressure is closely monitored with medication as is her heart. She suffers from nerve damage in her spine, hips and legs that causes excruciating pain. She has had multiple spinal fusions, nerves spliced and severed. The pain medications she takes give her "moderate" relief. She stays in bed most days or we wheel her around in her wheel chair. She cannot propel herself due to limited range in motion in her arms and the pain that emanates from her spine and hips. She was recently diagnosed with osteopenia, the forerunner of osteoporosis. The muscle spasms she suffers through are horrific to me; I see the "rope of muscles" contracting down her leg and my heart stops. I rub her with a pain salve in addition to her other medications, warm compresses help, but it actually brings more topical pain if I try to massage her. Now I understand why she couldn't endure any of the physical therapy that was prescribed for her.

When she suffered her stroke in 1999, my professional life went downhill. I was an assistant manager at a national drug store chain that had little sympathy for my dilemma. I asked for a transfer to a store so I could be closer to their home. No. I asked to be demoted to a position that would allow me to choose what store I worked in, so I would be closer. No. I cited my own health as a reason; I'd had a spinal fusion in 1993 and the osteoarthritis was advancing, making the demands of the job harder to meet. No.

After a poor performance evaluation I decided to quit. I was also separated from my husband, so my emotional state was fragile.
I was able to secure a small mobile home across the street from where my parents lived. How I hoped my luck would change. Being available for both my parents helped them so much, I felt leaving my career was justified.

I was denied employment at one of the local chapters of caregivers in our city due to a snag with my mom's Social Security benefits account. Four months of interviews and home visits wasted.

I found a part time job that pays my immediate bills. I couldn't afford COBRA so I am still uninsured. I have neglected myself badly because I have been so busy trying to help Dad take care of Mom. The emergencies the past five years have taken all of my savings and retirement. I fear I have waited too long to make arrangements for myself, that I feel stranded and do not know who to ask for help. And now my health is in need of attention. I was so tired of hearing about pre-existing conditions, I just gave up.

My dad refuses help as long as he is able to care for her with my help. But his health is failing rapidly also; he has already had two strokes in the past 10 years.

I've always imagined myself as strong and resilient. I know I have no excuses for not finding information for myself; I honestly thought it would get better or things would "just fall into place". Any suggestions, short of a swift kick in the pants would be appreciated and welcomed. I need help. Thank you for listening.

Yvonne
kibukichan@aol.com

10/12/05

I remarried in February of 2002. My mom came to live with us six months later. She had been quite ill and came to our house to recuperate. Since then she has been with us.

We built a room onto our house for her so she could have her own space and we could have ours.

She is suffering from degenerative back disease and after taking a serious fall in our garage has been unable to walk on her own. She is using a walker and sometimes it's still too difficult for her to get around. We have a wheelchair but her upper body strength is gone to she can't push herself around. Besides, she is fighting with all she has not to get to the point of having to have to use it.

Sometimes I get so frustrated that she moves so slow that it's much easier for my husband and I to fix dinner as well as do other things around the house. Even though she wants to help it drives me nuts because I move so much faster and she gets in the way.

I thank you for this opportunity to share my frustration. At the same time I've got this big guilt thing going on because she was such a terrific mother while I was growing up and we were very close. Now I often feel such a burden has been laid on me.

My father passed away in 1997 and I get so angry at him for leaving this up to me. By the way I'm an only child so it isn't like I can have help from them.

At this point my husband is so much nicer then I could ever be with her.

She will not go to an assistant living facility. She doesn't have the mental strength to suffer another move.

Again, thank you for allowing me to get some of this off my mind. Everyone I talk to telsl me how lucky I am to have her and that I am doing a very good thing. I wish I felt the same.

Maureen
maureen315@yahoo.com

10/10/O5

I take care of my mother who is 74 and in a wheel chair. I am the eldest of seven (although I feel like an only child), take her to doctors, shopping, wherever she needs to go. I also take care of my youngest daughter, my husband has fibromyalgia, car-pool my nephew to school and back, feed and tutor 25 kids in an after-school program, and volunteer for 4-H. WHEW!

On my spare time (!) I make blankets for the Project Warmth program, set up summer picnics for our co-op, and my eldest daughter had triplets last year. I’m tired. I have looked for support groups here in Michigan but nothing has materialized. Oh, I should mention that I also, as the head of the family, take care of my six brothers and sisters, even though they all have families of their own. I just keep asking myself, WHEN IS IT MY TURN? I've done this my whole life. Thank you for letting me vent.

Sharon
mixedmutts@yahoo.com

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