The following are true stories sent in by today's caregivers:
6/20/05
Hi, my name is Beth and I am 51 years old. My dad is 85 and my mother 83 and I count them as one of the greatest blessing God ever bestowed on me. My Mom is very ill and the doctor has told us her death is not far away.
I want to do everything I can do to support both of my parents. The hardest part is watching the pain they deal with day to day, wanting to let them know how precious they are and how much I treasure them, but at the same time preparing myself for the next step.
Does it ever get easier? I don't know. The best way I deal with it is to treasure the good days and on the bad days, I just look forward to the next good day.
For me, I wouldn't want it any other way. I watch and marvel at the strength and love they have for each other. I feel so blessed to be right here to help them. I pray that God will help me let Mom go when the time comes. I pray that I will be able in some way to comfort Dad when she is gone.gamblinfvr
gamblinfvr@yahoo.com
5/31/05
I was married to a wonderful man in November of last year. The following month, December 23, 2005, my husband's aunt called and told us that her sister, my mother-in-law, wanted to stay with us for about a week for Christmas. She has probably stage 6 of Alzheimer’s. Deep inside I thought, "Oh god, a whole week!" But I was a lady about it and welcomed her in.
Two weeks later, my husband called his aunt and asked if we could drive her the hour and one half back to her house as Christmas was well over and we needed to get back to business. He was informed that (aunt) could not take care of her since his other brother had sent her back from another state to the aunt with a one-way ticket because the mother-in-law was too much trouble and we would have to take care of her for the rest of our lives and by the way, she had not had a bath in six weeks!
Now I am not an evil person but I want to know if someone out there has ever had this kind of shock come into their lives overnight! This has turned our lives upside down. I always thought that taking care of an elderly person was a little bit easy! I can't seem to accept this because it was not even discussed with me, not planned, not even thought of! How can I cope with this change in my life without being so bitter?
5/26/05
I am just turning 32 years old, I am the youngest of four children. My parents have always been there for me. My father has had colitis for many years, when I was in 7th grade, he had colon cancer and survived that. He is a stubborn but loving man. My mom was hit by a drunk driver before she ever had me or my brothers and they said that she would never walk again. She did. She also had us. In spite of her disabilities, she managed to work a full-time job and go back to school and get a degree in marketing. Although, she never did use her degree for a great amount of success, we always had what we needed. My dad received an veteran’s check each month from his disability that he has.
Now, my story. For the past seven years my father had been losing weight and having a hard time keeping it on. We thought it was from the crone's disease, still don't know. Mom, started to have her legs come up with open sores from the skin deteriorating from the lack of circulation in her legs. They wouldn't heal for weeks sometimes months. They lost their home that took them 50 years to buy.(Their first home) My father's medications cost so much that they didn't have enough to pay the house payment, but we kids didn't know. It was too late by the time we found out. Ever since then they have been in debt. My mother started to forget to pay bills or overdraw their accounts. The youngest of my brothers leached off of them what little money they had. My second oldest tied up in his own family. I was all that was left. I had just gone through a divorce, which was for the best but consumed a lot of my time. I found in a VERY short time a place for them to live, not the Ritz because of their money situation. But it would have to do. I didn't have enough room in my tiny one bedroom apartment and didn't have much after the divorce. Dad's health continued to deteriorate.
In and out of the hospital. Mom, went on oxygen but was still doing okay. Dad became addicted to the pain pills and took too many, fell and broke his hip. Land in a nursing home for three months. Came back home and is still taking too many pills. He will fall asleep after taking one and then wake up a half hour later and take another one, forgetting that he took the first one. Mom, tried to help him but he would give her a hard time.
Fast forwarding to now. Dad is back in the hospital on I.V feedings and a tube in his stomach and has a blockage from his lower stomach to his intestine. He cannot eat even fluids. He is three hours away from us, and they want to send him home. He felt good yesterday, but we went to pick him up and he was throwing up again. Too weak for the ride home. Meanwhile, mom is getting weaker too. So, much pain. Getting forgetful.
I work 40+ hours and took a second job to raise some more money for my wedding to a very wonderful man, who supports all of this with my parents like they were his own.
He does not work due to an accident at work and receives compensation from their insurance company. He is also up for surgery that will put him out for three months. He has a 5-year-old son that stays with us every other two weeks, but will be staying with us mostly full time for school soon. I don't know how I can keep doing all of this. I finally got them to let me take over their bills and make sure they are getting paid. But my brother takes it. Doesn't make sure they are okay when I am at work. I take care of my home too, with my fiancé’s help of course, but it still is a lot of work. We have horses and cars that we are trying to sell for the wedding money.
I feel guilty for wanting to get married when all of this is going on. I am close to losing my job because I keep trading days off to make appointments of my parents. If I lose my job I lose everything I worked for. I want so much for my parents to not have to worry about anything, just enjoy the time they have left, but it is all getting to be too much at times. Not enough time in the day. I can't get them into an assisted-living facility because my mother is a year too young and they could barely afford it any way, especially with all of the past due bills that are piled up. My fiancé is my rock, but I will be losing his physical help soon. I hope I am sane enough to deal with it all by then. Plus plan my wedding for September.
Wish me luck.
Malinda
malindamurphy@hotmail.com
5/23/05
Here is an update to a story that I wrote on May 1, 2005.
I had stated that there were problems with my mother living with me in my previous letter. Well, just to let you know, my Mother is no longer living with me. There was an episode where my Mother asked my husband where I was one evening. He told her that I went to the store. I never get out by myself. I am either with my husband or my Mother. So I just needed the space. So my Mother told him, well she would never go out without telling me first. Well, three times she went in to bug him. Finally on the third time, he told her that, you know Mom, she is not a baby anymore and you really need to realize that and she does have the right to go out by herself. She even went out to the garage and opened it 3 times.Well, when I got home I knew that something had to be done because my husband and I can't live like that any longer.
I went to bed that night knowing full well I intended on talking with her the next morning. I will tell you that I was scared to talk to her about it and that even made it worse. So after taking a chill pill, I went into her room and we both sat down. I told her that we needed to make some changes in our living arrangement, that things just were not working out. I told her that she needed a place of her own so that she could be independent again. Come to find out she admitted to me that she had the same feelings but didn't know how to approach the subject.
So today, one week after the fact, she is now in our own place only 5 minutes away and in a senior community. I opened up to her somewhat, but never got into other things. I thought that this was enough for her to handle.
I will pray that she finds happiness in her new surroundings and I will be there for her, which is why I wanted to be close, just not in the same house.
So if anyone is going through this type of situation, maybe you might want to think about opening up and sharing your feelings. Let them know that you do love them and you will still be there for them.
Any feedback is appreciated.Bette
nericci@yahoo.com
5/1/05
Two years ago my Dad passed away after being very sick with heart problems. My Mom had a very hard time coping (so we thought) any spouse would after being together for so many years.
My husband and I discussed having a house built to accommodate her moving in with us. We discussed it with her all of the pros and cons as well as financial matters. She agreed and thought that it would be the ideal situation.
I love my Mother very much and we also share such a special bond over the years. It has now been 5 months of her living with us and I have really done a complete turn around. I see things that I never saw before.
She is a very controlling person, but she is no longer controlling me as she once did and it really does bother her. I had to put things into perspective, because it was hurting my relationship with my husband.
When my Dad was in the hospital dying and she decided to disconnect the life support because there was no hope, she told me that she did not want any of us going to the hospital once he went into hospice. Of course I honored her wishes because, as always, I listened to her out of respect. This is something that has been eating away at me and the guilt is unbearable. Why in the world I listened to her is beyond me. Why couldn't I see that is part of her control that she has had over me for the past 56 years? My sister could see right through her, why couldn't I? That's not to say that I don't love her anymore because I will always love her, it's just not the same. Maybe the respect is not there as it once was.
She is pretty well independent, with the exception that she will no longer drive because of her eye problems. Also she has chronic atrial fibrillation and refuses to be on medication. I have no say in the matter because she is of sound mind. I am just afraid that one day I will wake-up and she won't because of not taking this medicine. She is just too stubborn to realize that she is killing herself slowly but surely.
Tomorrow she will start going to a senior daycare program at the church. Hopefully that will help her some. Then I am also checking into programs at the hospital. All she does all day is sit in her room and watch TV, which is not good. She also seems to eat a lot of sweets in which she didn't before. She has lost a lot of weight, which has me concerned, so I am going to talk with her doctor since I have a signed paper saying it's okay that I discuss any medical problems.
It is a very trying time at our house. We never know what to expect next. My husband and I just got back from vacation and I went to the cemetery where Dad was buried. She has yet to ask to go. I guess people deal with matters in different ways.
My whole thing is I am having a very hard time forgiving her for not letting us go to the hospital in his last days. Thank goodness my sister went and she told him that we had been there and that he was sleeping at the time of our visit. I know that I need to work on how bitter I am towards her. Because, we never know how long she will have. She will go to her grave never knowing how I feel, because I don't want to hurt her feelings even though mine have been hurt. I have to look at the overall picture that she is still my Mother and I will continue doing for her as long as she wants me to.
Well, in closing I have to say, that if any of you out there are in the same situation, and if they are pretty independent, then let them stay in their own surroundings for as long as possible. Don't take that away from them. Any comments and help would be grafeful.Bette
nericci@yahoo.com
4/25/05
I am 39 and the baby in my family. My father is 75, lives alone but is failing slowly and may not be able to live alone. I live six hours away with two small children and a husband and go home for four or five days at a time to help my siblings. My father is somewhat stubborn and my sister is way over baring with him and everyone else. My brother, who lives 2 minutes away, is a serious alcoholic who goes in every afternoon to bring him dinner and give him his medicine — and is showing signs of not being able to be trusted. Neither sibling can get pass the fact that "the baby" has been given power of attorney should we have to use it regarding my Dad. I have no intention of making any of his decisions for him — he deserves respect and dignity unless he becomes incompetent. The thing is my family has NEVER gotten along and this is all a big mess. All I want is to make him as happy in his final years as I can? Where do you get support? I can really use some?
Faye Beaudette
tbeaudette@aol.com
4/20/04
I am the "middle" child of 4! There are large gaps between children in my family but I'm closest to middle and definitely middle in personality!
My mother, Henrietta, is 90 years old. She is in excellent physical health. She was diagnosed with dementia several years ago, but was able to live on her own until last month. She is "there" sometimes and sometimes she's not. She thinks she's "there" all the time.
My father died 15 years ago and since then, my mother has become a whining, self-centered, pain in the you know what!! It gets worse every year. Somehow she has decided that entertaining her is the only important job any of her children can possibly have. She's negative and constantly complaining. Nothing we do for her is enough - she is never satisfied.
She has worn us all down to the point that none of us wants to even talk to her on the phone anymore — she just ruins your day.
For the past 5 years, each of us kids has gotten the "I'm so-o-o-o lonely" phone call at least once a week and usually several times a week. She was living in a single home and just spending her days sitting there in her room thinking of all the bad things - she doesn't read books or watch TV or write letters or do anything — just thinks about how bad off she is and how neglected by her children.
People, this woman was married for 54 years, she had maids and babysitters — she didn't raise any of us kids; my grandmother raised us mostly. My younger brother missed out on that and got Mrs. Busbee and Wanee, the Vietnamese maid.
My father was a big wig in our small community and she was the perfect trophy wife — problem was she really was just a trophy; she looked good and made great public appearances, but there was never any substance to her.
I have had to deal with many tragedies in my life and she was never there for me when I needed her. When I was divorced (from the man she chose for me to marry) and he disappeared with my two small children shortly thereafter, my father informed me I was not to call my mother to tell her about anything that would upset her ever again. I'd just have to handle it.
I handled all the tragedies of my life alone, without the support of my family.
Sixteen years later I found my sons and was renewing a relationship with them, when my 18-year-old son was killed in a car accident. She just couldn't come to the funeral. I'd just have to handle it.
I handled it.
Now when she is lonely, I'm supposed to drop my life and run to her side!! When she decides she is not going to take her medicine as prescribed and gets sick, I'm supposed to come running.
And the worst part is, I do. I know the pain of trying to handle things alone. But I resent it.
In March, she fell and bruised her shoulder — bruised, not broken, not sprained, just bruised. She decided she was in such awful pain she needed to go to the emergency room. She called a friend of her to take her on Saturday. She is such a drama queen, she managed to talk a doctor into giving her very strong narcotic pain killers and prescription naproxin to shut her up.
Unfortunately, this little attention trip got her in real trouble. She didn't understand the directions on the prescription and wound up taking 12 narcotic pills in 24 hours. A true testament to her physical health, it didn't kill her, but it did land her in the hospital.
I live six hours away. My brother, who lives six minutes away called me to come. I did. The doctor decided it was time that mother move into assisted living or at least an environment where other people were around — this would help her loneliness, make sure someone was around to check on her periodically during the day, etc.
Sooooooooooo, I went to the retirement community nearby where we had been trying to talk her into moving for years and made the arrangements. She was released from the hospital directly to a rental unit at the retirement community and I stayed with her most of the next three weeks. My sister and her son drove 17 hours to spend the week helping us get her moved into her new apartment. We were able to move her furniture and important family pieces into the apartment so she should have felt right at home.
This facility has set eating times and if someone doesn't show they go to their apartment and check on them. They have a system to check each day if the apartment door has been opened and if it hasn't, someone goes to the apartment to check on them.
During the time I was with her, I set up medications in daily boxes, one for morning meds and one for evening. We talked to her doctor about this several times. I bought organization pieces to help her not lose her apartment key and her glasses and stuff like that. We practiced for the entire three weeks I was there — I didn't do things for her, I made her do them so she wouldn't be depending on me for things.
Her new environment included people she had visited there for years, she was in familiar surroundings, she was getting nutritious meals, there were many planned activities — we thought it was going to make her happy.
After I left and came back home to resume my life, it was maybe three days before she was calling us all again with the "I'm sooooooo lonely speech." Then it was the "I'm sooooo sick speech — she informed me that she was not going to use my daily medicine routine, she was going to do it her way. When I asked if she was sick because she wasn't taking her meds properly, she said no, she had stopped taking her meds the day before and she couldn't remember if she had taken them before that.
We have been through tremendous effort and expense to try to make her declining years as happy as possible, but it's not working. She just chooses not to be happy.
I'm exhausted with it. I have stopped answering my phone because she just ruins my day, causes problems with my family, etc.
I'm really sorry she's not doing well, but I can't fix it. She has too much money for any government support, and not enough to afford the kind of care she really needs.
What she really wants is for me to leave my husband and come entertain her. Now how's that for a selfish woman!
She'll just have to handle it. I did.Henrietta’s Middle Child
pns5015@bellsouth.net
4/7/05
On 11/1/2004, I closed on a larger home to accommodate my daughter and her twins, who live with me (they are now 2 years old), lost my job of 25 years (thank God I get 50 weeks of severance pay) and my 87-year-old mother fell down the stairs and hit her head on the basement floor. A CT scan of her head showed no problems at that time. However, on 12/11/2004, she fell twice and hit her head both times. A CT scan at that time showed a massive subdural hemotoma (blood clot) which had apparently been growing since the first fall on 11/1. Subsequent brain surgery to clean out the blood clot was successful. She is in good health with some confusion and short-term memory problems.
Because of purchasing a larger home, I have taken Mom in to live with me also after she got out of rehab at the hospital. However, she desperately wants to go home again where she would live alone. The problem is, she needs to be reminded to take her blood pressure medication twice a day. When she does remember to take it on her own, she sometimes takes the evening pills instead of the morning pills, which are different pills. This is in spite of the fact that I have the pills in separate compartments for morning and evening and for the different days of the week. So, if she goes home to live alone, I feel that someone would have to check up on her twice a day to be sure she has taken the right medication. If I relied on calling her on the phone to ask if she has taken it, she would tell me she did and she might not have taken it. I know this because I ask her now if she has taken her meds and she tells me she has, but when I check the pill container, the pills are still there or the evening pills are gone and the morning ones are still there. Her comment is, aren't they the same?
Did I mention that I am an only child? My 28-year-old son and his family live very close to Mom, but he is busy with his wife and 2 young children, and isn't a reliable source of assistance.
I want Mom to be happy, but worry about her ability to live alone again like she did before the falls. I took her to see her sister who has Alzheimer’s and is in a home. Mom didn't seem to care for the smallness of Aunt Rosemarie's studio room. She doesn't even want to look at assisted-living type of arrangements and keeps saying that she wants to go home. Even if we were to convince her that an assisted-living arrangement were the best for her, I am not sure she can afford it and know that I cannot afford to pay for it. We want her to continue to live with us, but she just sits there all day watching TV, which isn't good either.
I need to begin looking for a new job but am not sure what to do with Mom while I am at work during the day. My daughter also needs to work to support her children and herself, which would leave Mom alone all day with both of us working.
Is anyone interested in starting a support group in St. Louis, Missouri? I know I would be. Email me if there is any interest.
Also, if anyone has any suggestions for my mother, let me know! Thanks!Janet Finley
janetfinley@sbcglobal.net
4/7/05
My mother has been diagnosed with Alzheimer's for 7 years. She has been courageous and took the attitude that there was nothing she could do about it so she said there was no need to worry about it. She worked on crossword puzzles to keep her mind active and read as much as she could.
This year she suffered a major loss in memory and emotional stability. She cannot do her puzzles, but carries them about and her newspapers, puzzles, and books are a rolling pile of lea-like litter on her bed when she tries to sleep at night. Also she has clutched onto chocolate.
Now she has had a few spells of being totally outraged with people she used to know.I find the thing to do is to try to meet the challenges as they come. They often seem like they are coming too fast that I cannot plan for them.
She cut her foot and got herself locked into the bathroom and wouldn't let me in on Easter Sunday. Now the door is taken off the bathroom. A shower curtain replaced it. If she turns the stove on again, I will remove the knobs. I bought a file cabinet to put her jewelry, which she decided she wanted out of her lock box and to wear, in it. I will have to put all meds there, also since she has taken some without my knowledge and I caught her taking some of unknown origin one day.
She has started wandering and doing things around the house. She cannot do the intellectual things which she has enjoyed all her life. She has a BA degree and taught school. So she has to find something to do. A person working with an Alzheimer's person has to let go of the idea that things should be perfect. I gave up trying to keep her from putting the dishes away because they were in the wrong place. I gave up and let her piddle in the cabinets and in the utility room and even in the laundry. These were things that, for seven years, she hated to do and would not do the work. Now I have a system and she is messing up the organization.
The challenge is in my self and the constant change my expectations have to undergo. If my mom is going to stay out of a nursing home, then I must roll with the flow and be able to distinguish between those things that are seriously important and those that are not.
Also, having help is essential. I cannot afford much, but she has a bath lady that also fixes her hair twice a week. Several other people come in and help with other things like shopping. I am not well myself and need the help, too.
For a person like me that hates change this has been a true challenge. But I hope to be able to meet this terrific challenge with the same courage my mother has tried to meet it these seven years and carry out her wish which was this:. She wants to stay in her home until all her money is used up before she is taken to a nursing home. Therefore all her assets are to be used to keep her here at home. She said she would die quickly in an unfamiliar environment. I am 49. One day at a time.Carol Brown
hosanna1@murlin.com
4/5/05
First I want to say that I can relate to being the youngest, only female and understand how hard and unfair that can be. At 53 and retired recently, there's not much chance I will be taking trips like my brothers, so I am feeling a little jealous of hearing of the wonderful places they are traveling to. My husband suffers from a neck injury when we had a car wreck on our 28th anniversary, the only one-day trip he and I have had in two years. When I asked my brothers to stay in Dad’s guest room and watch over him so I could go to Vegas for a few days for my birthday, they refused and were even mad that I asked. Well I have found that emotions run high when something like my father losing his wife two years ago in a car accident. You would think Dad would be the emotional problem, not his sons.
My father has pretty good health and still has a good sense of humor and I am thankful for that. He will be 92 in August and stopped driving two years ago. This is an area I think will be of some interest to many out there. Dad had a stroke about four years ago, but it didn't have any signs of causing him any problems and he was allowed to continue driving. After the accident I wondered if there were some visual problem after the stroke, but will never know. I asked the doctor to evaluate Dad’s driving ability after the accident and the doctor felt he shouldn't drive and would pass that information on to the DMV. You see Dad would never break the law and drive if he was told by the doctor he couldn't and I didn't feel comfortable about his driving any longer. The doctor pointed out that if he thought or if the children of an older adult thought, a person was having any problems with driving and they don't report it, they could be sued by the insurance company if a car wreck were to happen. Yes, even if you lived away and your parents are driving and you are aware of a possibility of unsafe driving , you and their doctor could be sued.
Giving up his car was really a hard thing to do and don't think for a minute I didn't feel guilty for doing it. Naturally my oldest brother was against this and informed Dad that "somebody" had put the word out.. The saddest thing about all of this is that the three of us were fairly close and now if I ever saw them again, it would be too soon. I thought my big brothers would be there for me if I ever needed them and it hurt to find out I was wrong.
4/4/05
I am adopted. It never bothered me growing up, I never had the need to "find my REAL mother." The one I had was trouble enough! My mother has always been a very cold and unaffectionate person. I have not one memory of my mother reading a book with me, or holding my hand while talking a walk. I was a pretty sickly child, and all through my childhood she threw up to me how much "money" she had to spend on doctors for me, and how today she would be a millionaire if not for all my doctor visits. Needless to say, this woman was never there for me with any type of motherly support while I was growing up.
Now, she is 85 and a widow and has made it through cancer and two rounds of chemo, a broken hip and replacement, and just recently was diagnosed with osteoporosis which results in fractures of her pelvis and vertebrae.
Silly me, I thought that all this would "SOFTEN" this woman, but no, it has made her tougher. Now she "demands" that I take care of her, and that I should put aside my duties to my 10-year-old daughter who, by the way, is her ONLY grandchild, and just "do for her."
She is as cold to my daughter, who is a very loving and beautiful child, as she has been to me all my life. I see history repeating itself when she tells my child "you have to take care of grandma?" Yet she will not even send my child a birthday card! It's all about "her," what we must "do for HER." She feels that a parent does not have to respect a child, and that no matter how badly a parent treats the child, that child "must respect the parent and do everything for them."
What do I do now? All the articles and books I read tell me nothing about "caring" for a mother that is MEAN. I have feelings for her, I love her, yet it galls me to "have to" help her now. Because, even though I do "help her," she doesn't appreciate it, and it's "never enough." What about this type of situation? Can you help some of us who have mean and hurtful parents that are sick and who we "have to" help? I am at my wit’s end with longing for motherly love, which I know I will not get, even now at my mother's end, and feelings of regret of her dying and my never, ever getting that love. And, now I "have" to care for her. What do I do to keep sane? And not have my heart broken over and over? Can you help me? Please?
JoAnn Smith
WSmith5492@aol.comHome/About/Support/Join/Caregiver Guide/Helpful Links/Donations
