The following are true stories sent in by today's caregivers:
3/16/03
I am having a terrible time with my 85-year-old mother. She is retired from the federal government and her retirement is more than enough to take care of her. She gives all her money to a family member and then has nothing to live on. I have worked with an attorney on aging and all he did was take my $5,000 and write a couple of letters that accomplished nothing. She receives her check on the first of the month and by the third it is all gone. She does not pay her rent or any of her bills, no food or medicine. Then she calls me and expects me to pay all of the above. I have paid out over $20,000 in the last year and I am spent out. My mother is not capable of making any decisions except that she can call me for everything and when I say no , guess what: I am the worst person in the world. I need help and I do not know where to go. I have no more money to pay lawyers. PLEASE HELP ME!
Joanne Griffin
j.griffin@verizon.net
3/16/03
As a registered nurse, I expected to be a primary caregiver for my family. My expectations became reality as I fulfilled my roll over the years helping out with broken limbs, terminal care and other minor events that were, periodically, set before me.
My biggest challenge spanned six years from the time my mother-in-law became ill with ovarian cancer in 1994 and my husband died in 1999. My husband had a lifelong chronic heart problem, but he had always expected to be responsible for his aging parents who were well into their 80s. We all lived together between Vermont and seasonal trips to warmer climates. Soon I found myself the primary caregiver for a chronic problem, a terminal problem and a dementia problem, all at the same time. I should also mention during this period I was overseeing my husband's private businesses and returning to school myself to maintain my sanity. Human ability to accomplish the unexpected often surprises us; we do what we have to do! Humor and perseverance are my prerequisites for survival.
When I realized there were few avenues for resources at the time, I focused my attention and my academic goals on contributing to solutions for myself and now for others. My nursing turned to case management with a BS degree and case management certification.
I lived the solutions first hand and now hope to contribute in any small way to advance the resources available to others who may find themselves in similar situations. There is always a better mousetrap out there and the only way to find it is to use your own experiences positively to help the next person.Beth Barrett
ebarrett@aol.com
3/7/03
Well first off I would like to say that I have read a lot of the letters and my heart goes out to all of you.
I am an only child. I am 41 years old, divorced with two children, one 21 that is a full-time student in college and an 18-year-old who is a senior this year.Here is my story. In 1996, my step-dad died and my mom was all alone. She wanted us to all move in with her because her house was paid for and lots bigger than ours. My husband at the time saw dollar signs and so we sold our house and moved in with my mom in May 1996. In September of 1996, my ex moved out and in May of 1997 we were divorced. He is one of those deadbeat dads who would not pay child support or help with the kids in any way.
Soon after we divorced, my mom became ill and has been going down ever since. She really has too much wrong with her to list and all the doctors can say is that it is just a matter of time.
My daughter 21-year-old daughter still needs help from time to time from mom. My 18-year-old son is a "know it all." .He is still in school and I hope that he will finish in May of this year, but he has missed so many days that who knows if he is going to finish or not. My ex is still a dead beat and will not do anything for our daughter and very little for my son.
I am a personal care attendant by trade and I take care of a quadriplegic 5 hours a day 7 days a week. Then I get to come home and take care of my son and my mother who can't do anything for herself any more. I also forgot to add that my dad is still living and thank god is in pretty good health. However, he only went to the 3rd grade in school and is not very bright. So I have to take care of all his bills and stuff for him. Both of my parents are on a fixed income and I don't make much myself. My mom thinks that just because I am living here that my dad should help her with her bills.
My mom is driving me nuts and I am so tired of taking care of everything and everyone. I know that my problems don't sound all that bad, but I am 41, divorced and, after 5 years of being divorced and alone, I have found a very loving man who is so understanding and kind wants to be with me and loves me just as much as I love him, but because of my mom being ill and me being the only child we cannot be together. It really stinks. I have never liked the town we live in and I have never liked my mother's and step-dad's house, but I am stuck here and I see no way out.
Well It helps me to know that there are others out there just like me and my heart goes out to each and every one of you.
Best Wishes and Good Luck.
1/29/03
My parents are both 85 and living in an independent living facility. Mother is doing just fine but my father is another story. He's contrary and refuses to do as asked - he knows only one speed - slow. Admittedly, his world revolved around his job and he's never had many outside interests and therefore has no reason to get up. It would help my mother so much if he would just get up and get dressed, but she has to hassle him nearly all day just to get him dressed in time for dinner at 5:00. Right now he's refusing to take a shower - it's been nearly a week and Mother's at her wit's end. He is diabetic but it seems to have little meaning to him that he must eat on a regular basis - it's now after 10:00 and he has not had breakfast. In fact, he hasn't eaten since last evening. Any ideas? It's also been suggested that he could be in the early stages of Alzheimer's.
Martha
junebug2@bigfoot.com
1/22/03
I have just found this web site. I was hoping I would find help on how to better manage my own life and someone who is in a similar situation as myself. Hope my venting now will help.
My story is over three years old. I am now 36 with a 33 year old husband with Reflex Sympathetic Dystrophy (RSD). Not many people have heard of it, including doctors. It is a nerve disorder where he is in severe pain 24/7, he is now on morphine all of the time and many other medications. Easiest way to explain it, it is somewhat similar to MS. It has spread through his body. He falls, has bad shakes, partial vision loss, colitis, sinus infections. Luckily it has not affected his organs (yet). He is lucky to get four hours of sleep a night, which has disrupted my sleep patterns. He doesn't get out much and has a scooter to do so. Temperature and dampness bothers him greatly. In turn, we don't have much of a social life together. In the past year I have finally started to have my own social life, although it is still something I have to push myself to do. Noise bothers him. I, being a big music person, must listen to it with headphones.
This all started when we where married for only three months. We have never had a chance at a life together. It hurts me terribly that I will never have children. I try not to let myself think about it. I have had to change so much of my life. Many of my friends don't understand. His family has been very little help, they are self absorbed and have caused more stress. We deal with workman's comp insurance which means: attorneys, court, and continuous denials, and him getting worse. One issue is mental therapy for him, they have denied it for two years and had canceled it on him. This blows my mind. More stress. And I don't want to leave out the financial stress.
What has helped me deal with all of this is therapy (which I HIGHLY suggest to everyone), a mixture of Bach flowers which my therapist gave me (I also suggest this highly), my family (which is primarily phone support since only my brother is close by) my gardening (which I miss terribly right now). I am building a new network of friends at a new job. I still have bad days of dealing with the whole package, yesterday being one of them.
Take care. All of us are obviously not alone.
Judi Seaver
Realtyjudi@aol.com
1/21/03
I am the only child (female) of two elderly parents who are both 82 years old. All I can say is that the dots are no longer being connected in their lives. Mom just suffered a mini stroke but insists that it was not a stroke but merely a stroke in her right eye. Dad continues to drive and has two broken down cars that he alternates using. Neither one can hear correctly and it's now necessary to repeat whatever you say five times. I have been taking care of elderly parents all of my life and am very burned out. Matters will only continue to deteriorate but my folks will not listen to my suggestions. I am still the child in their eyes and that will never change. Frustration and stress are mounting and I have to distance myself from the situation.
Michelle Pettit
mdp7@nau.edu
1/17/03
My mother is 83 years old and has cancer. I have been taking care of her for the last two years. Even though she has insurance, with all of the co-pays and deductible I am out of money. Recently she was hospitalized and now requires even more care. I am asking more of a question, rather then telling a story. It is very hard for me to work and take care of her. Is there a program or grant or anything to help?
Charles Gilbert
traesdad@aol.com
1/13/03
My mother is 77 years old, was blessed with good health except for her hypertension until November of 2002. She had been ill and unable to hold anything in her stomach for quite some time (her husband wouldn't tell me exactly when this started). I made a doctor's appointment for her and the doctor gave her something for her stomach and said he should see her the following Thursday and if she got any worse at all to take her to the emergency room. I live about 45 minutes to an hour away from my mom and I work, so I would call over to see how my mom was doing every day to make sure she was doing better. Well, I was being lied to by her husband. Every time I would call he would say she's doing better and able to hold soup in her stomach. Well, a couple days later I received a call from her husband saying he thought he should call an ambulance to get her to the hospital as now she couldn't walk. I told him to call 911 and hang up the phone from talking to me.
Her electrolyses were all screwed up and she was very near death. She was in the hospital for two weeks and four days. I found out later, from a neighbor of my mom's that her husband had been lying to me about my mom because her husband had asked that the neighbor stay with my mom while he ran an errand. The neighbor told my mom's husband that if he didn't get her to a hospital he was going to lose her. THAT'S THE ONLY REASON THE AMBULANCE WAS CALLED. NEVER MIND MY CALLING OVER THERE TO FIND OUT WHAT WAS GOING ON.
Her husband is an idiot and has no common sense. He does whatever my mom wants, whether it's best for her or not.
I stayed with her while she was in the hospital and the first two weeks when she came out because I was not able to trust her husband to do the right thing and not lie to me. I've also warned him that if he lies to me again about her health I will take my mom away from him.
The problem is, I will need to get an attorney and get social services involved in order to get her away from him. This guy has my mom brainwashed that he's so perfect and does no wrong. I will wind up being the villain here and she will hate me for breaking them up.
So for now, I go over every weekend to see for myself how my mom is doing. She still needs to get teeth pulled (she's let them go because she claims they don't have the money). I've offered to pay to have her teeth fixed but she and her husband won't let me pay saying "they never take money from family or friends." My response to that was, yeah, just let things go like you have in the past and wind up paying more money than you need to (i.e. the hospital visit could have been totally avoided had she gone to the doctor earlier and I had not been lied to).
I am totally frustrated with this whole situation and I bite my tongue every time I see her husband when I visit my mom.
If anyone has any suggestions on how I could get rid of her husband, or work around him, it would be greatly appreciated.
Kathy
kkeating@earthlink.net
1/10/03
Where to begin? My mother-in-law, age 84, was finally diagnosed with small stroke dementia in 2000. Dealing with her needs has been a tough situation. She has two sons. My husband is the youngest and we live approximately 300 miles away. His brother is the primary caregiver or rather I should say his wife is because he has been in denial from the get-go! They live near his mother. My husband for whatever reason from the beginning would not try to reason with his brother. Only by the grace of God and a wonderful godly counselor is our marriage still together. I am the responsible type and my husband is very willing to allow me to take on any and all responsibility. I had to learn to allow him to be his mother's son. Approximately four times a year, up until October 2001, my husband would go and pick up his mother and bring her to our home for at least two weeks. That went on for five plus years - she lived alone. Her decline was quite noticeable to me and as the trips continued her decline became worse.
I seek any and all information I can about dementia, a good thing since my mom at age 80 has just been diagnosed with Alzheimer's type dementia. For 3 1/2 years previous to the diagnosis, I knew something was going on. We live 225 miles from Mom. I am the oldest of three daughters. My sister next to me in age lives next door to Mom and she is in denial! My question is, how can these folks be so blinded? Because my mother washed, prepared and cooked collard greens for their New Year's dinner that tasted delicious, my sister and her family believe our mother is "fine." She's lost weight, which says to me that there are times she is not eating, although if anyone asks she will probably say that she has. She gets things confused, and is still driving locally even though it has been reported that she passes up the place she is going from time to time. My youngest sister just wants all of us to get along!
Again, I can only say that God's grace is sufficient. My sister has told me that when our mother gets to the point she can no longer cook or knows how to turn a light switch on or off she'll go to a nursing home "because that's what she wants." Unfortunately, when that time arrives my mother will more than likely not want to go. My sister has said that "Mom wants to be in control." Of course she does. Don't we all. Reality is that sometimes that is not possible. We cannot be in control because of being afflicted with dementia or something similar and someone has to take control.
I might add that I was diagnosed with depression 16 years ago and have been on medication ever since. As I look back, I probably have suffered from depression most of my adult life. I will continue to take the medication as long as the doctor says is necessary. I realize that I must constantly work on myself. Because of the depression and because my mother has Alzheimer's, I am more prone to one day have that same awful affliction. I pray even now that if I do that God will help me to have a joyful, accepting spirit so that I will not want to go home no matter where I find myself and that He will get me where I need to be when I need to be.
Martha
capcove@knology.net
1/9/03
I am an only child. My husband and I just moved my mother six hours from my her home town - the town she thought she would live and die in - closer to us, to an assisted living facility. This has been an amazing amount of work and caused an inordinate amount of stress on both of us, but especially on me.
My relationship was never that great with my mom, she has always been emotionally distant and we fought a lot when I was growing up. She has never been a good caretaker of my emotional well-being. We never had good mother/daughter talks. She took care of my physical body but that was all she was capable of. Now I am taking care of her. This comes with resentment at times, although I am accepting my role more as time goes on.
We are just in the process of closing up her home, my home, where I was raised, which is six hours from here. We have already made three trips with both of our cars loaded with her things for the apartment. Now we have to hire a truck and get the things we want to keep, the rest we are selling at an estate sale at 40 percent less because my employer would not give me leave through the family medical leave act so I could sell it myself and make more money for her expensive monthly costs at the assisted living facility. She lives on her life savings and a meager monthly Social Security check. Her savings will be gone in no time, so will my inheritance.
It is causing much stress and many sleepless nights. I am in trouble at work, and I am holding the stress of caregiving and lack of empathy from my supervisor responsible. I am finding lack of luster in my life. This is really hard.
Donna M.
werle@bitstream.net
1/2/03
I thought things were bad here until I read the other caregiver stories.
My mom moved in with us last month. She is a COPD, patient on oxygen constantly and has been in and out of the hospital for the past three years. A "friend" has lived with her the past two and almost killed her by supplying her with cigarettes even though the doctors have told her she had to quit to keep living. I kept asking him to quit buying her cigarettes but he continued because he said she had the right to choose how she wants to live her life. We found out that he was only interested in what he could steal from her after she almost died last month.
I convinced my two brothers and sister that we had to do something to help her. The four of us convinced her to move in with me and we all agreed to take care of her. They have helped me but the 24/7 thing is very difficult sometimes. I am a school teacher with a loving, workaholic husband and three very active children. My husband has been wonderful considering how much he dislikes my mother. He even stays with her on his off days. My main problem is dealing with nosy relatives who think they're helping but aren't and trying to find the money to pay for her expensive medicine. She is on a very limited income. I'm glad I found this web site I was feeling very depressed but just reading about others who are experiencing the same or even greater problems makes me realize I'm not alone.
If you know of any way I can get help with her medicine please e-mail me.
Sharon
mindbuilder@msn.com
1/1/03
After reading others' stories, mine sounds like nothing, but since I'm not the strongest person around, it's getting me down anyway.
Mother is 99, in the nursing home of a retirement community where she and Dad moved in 1976, a week after my husband died of cancer leaving me with kids ages 5, 7 and 9. This living situation has been wonderful, and still is, given Mother's status now. Dad died in '91 and Mother moved to an efficiency, then to her current big room in the intermediate care section of the nursing home. She's always been healthy, never broken a bone, recovers from everything. But recently she had a bout with pneumonia that we thought would take her -- then she recovered a lot. Now she can walk again with her walker, get herself dressed, and knit a bit, her only activity. While she was so sick, my "kids" and I came to terms with her leaving us. She could only sip ice chips, couldn't swallow, couldn't move herself in the bed. Now she has almost completely lost her memory and is extremely confused and consequently extremely distressed. The nursing staff are outstanding, but they can't be all things to her all the time.
The last straw that sent me to this web site was her call this evening asking if she could please come live with me. She promised to help out and do all the dishes and mending and some housekeeping. But she cannot even put her own clothes on straight! She is totally unrealistic, but how do I say, "No, Mother, you have to stay there. You can't live here. I gave her some logical reasons, but she's so unrealistic in her assessment that it did no good. I don't want to be pointing out how incompetent she is. I don't want to have to say I don't want her here. But it almost unhinged me to have her call and ask.
I find myself wishing we had not given her antibiotics to cure the pneumonia. She should have gone then, and avoided this confusing, distressing, anxious, pointless time.
My troubles are so much less than some others I've read, but they are mine and I need some support. I am an only child, by the way, and my other two children live a day's drive away. They all love Grandma. She's been a strong and wonderful Grandma, but she's lingering now and being trouble to herself and everyone who loves her.
Thanks to whoever is listening out there in cyberspace.
Jeanne Houghton
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