flare-up and then some. Need a shoulder

Discussion in 'Fibromyalgia Main Forum' started by ChungieDolor, Sep 30, 2005.

  1. ChungieDolor

    ChungieDolor New Member

    There are so many things to say, I do not know where to start. My father passed away a month ago from lung cancer at the age of 80. I miss him dearly, and feel that I have not mourned this loss since I am worrying about my mother all the time.

    My two sisters were caregivers for my dad prior to his death, and I tried to help out as much as possible. Of course, I feel it afterwards, because, one really did not get any sleep at my parents house. They were both up all night. My mother has a list of ailments herself, but she would constantly have these tantrums and outbursts. I could not deal with the fact that my mother was jealouss of this. (of couse this has been an issue all our lives)

    Now that my father is gone, there are no outbursts and the doctor has said that she can not be alone. My mother is 81. She was diagnosed with dementia, situational depression, and has other ailments. She saids the doctors are nuts and can be alone just fine. She is trying to get rid of mounds of clutter that they have lived in for years, especially since my mother retired. She does not let us help because she has to look at it first? This is in order to sell their home.

    We have a huge problem. My sisters used up their medical leave and had to return to work. They know I am sick, but in a way think I am capable of staying with my mother during the day, and then they take over for the evening.

    Well, I tried it the first few days. Was with my mother on Monday for 10 hours, and Tuesday 8. Then, my body went caput! There has been some improvement today as I am writing this message. (Sorry it is so long!) The fatigue for the last few days was pretty severe. I have not slept well, with the exception of last night. My body just gave out I guess. The pain has been debilitating as well.

    I call my mother several times a day to see how she is doing, and she saids that she is alright and that I need to take care of myself and not worry. Which is very hard thing to do. I have asked her to come and stay with me, so at least I know she is safe. SHe saids maybe in a few days.

    She loses things left and right. Which is another frustration, and asks what the day is several times daily. But when you talk to her she appears to be normal, and can remember things from long ago.

    I received a call from my newphew a couple of hours ago asking how I was. When I felt the call was to say where are you. My sisters have not called me. I feel very bad!

    My mom will not accept any other caregivers, saids she can do everything by her self, except for driving, and then she has asked for a drivers license manuel. We are in no position to hire a caregiver, and no one could get a red cent from my mother when she has the money.

    My sisters have looked high and low for caregivers, but it all comes down to my mother and money. I feel extremely bad that I am not able to take care of my mother.

    By the way, my sister works with a friend that has fibromyalgia but does not have all the other ailments like cfs, sleep apnea, thyroid etc that I have. I believe she feels I can contribute, when I know I can not. My doctor has said the same. I am currently on disability, and have been told that I can not work again. I continue to cope with that matter.

    I have a full plate!!! THank you for listening and sorry for being a whiner, I just can not help it this time.

    By the way, I will be making an appointment with a bereavement counselor from the hospice my dad was at.

    Thank you

  2. ChungieDolor

    ChungieDolor New Member


    Sometimes, I feel like taking off, like to the beach, and be alone for I don't know, a year maybe? I know that is not realistic. I guess what hurts me the most is that this one sister that I am supposedly closest to, does not believe I have these limitations. She has not come out and said anything, but you know. If one is not in a wheel chair, then what are we whining about. I can just hear her saying, suck it up!

    By the way, my oldest sister was talking about going to an attorney if worse comes to worse. My mothers pcp diagnosed her and my older sister was suppose to call him to get something in writing, so my mother could see it. I am not sure if that has transpired yet. My poor mother does not believe that he said that at her last appointment which was two weeks ago.

    My mom has another appointment with a neurologist next week. So, maybe something will transpire then. I know they will have my mom take tests, but maybe, she will give in, and move in with my husband and I, or accept the help of a caregiver when my sisters can not stay with her. I can only hope and pray.

    I appreciate your advise and prayers, we will need them.

    God bless you

  3. stillfighting

    stillfighting New Member

    You poor dear! I am so sorry about losing your father and having to deal with a mother who is not all there. Then to have your sisters put this pressure on you is unfair. Don't they understand that just because you are not working doesn't mean you are capable of handling your mother?

    You and your sisters need to have a serious discussion about having your mother declared incompetent and having one of you named as guardian. This will allow you access to her money and other assets, and get her into a setting where she can be supervised. Butzie is right about getting the cooperation of her doctor(s) and getting advice from an attorney on the best way to handle this.

    Your bio says you were a caseworker in your former life. Do you still have contacts who can help you figure out where to find a good, safe facility for your mother that she can afford? I have an older cousin who has Alzheimer's and is in a facility run by the Erickson group. They have everything ranging from independent living apartments to skilled nursing care, and various levels in between. I don't know if they have a facility near you, but it's worth checking for something similar that takes Alzheimer's patients. It's expensive, but you may be able to swing it if you can sell you mother's house. You can still visit (and you should), but at least the stress of day-to-day caretaking is off of you.

    It really is funny the way different family members react to our DD. My family is afraid to make me do too much, since more than a day or two off my routine of rest and exercise causes horrible migraines and general flares. This happens even during happy occasions, like my nephew's Bar Mitzvah. My uncle and his wife had to rescue me from my hotel room, so now the whole family understands that I flare up if I try to do too much.

    I went to my parents' home a couple of weeks ago to help my mother clean out her closet of clothes she no longer can wear so we could donate them. It is about half a day's drive, so I had to stay over several nights to properly manage my energy. My sister called from Boston (my parents are in NJ), and was very upset that I was even attempting this, and even more upset when she heard that I had a migraine from all the chlorine bleach my folks use to wash my mother's linens. It was hard explaining to my sister that I was capable of getting the clothes together with rest breaks and that wasn't what made me sick. She finally got it, but it was a chore explain what I can and cannot do. Sounds like you have just the opposite situation with your sisters.

    Please, Chungiedolor, do what you can to move the stress of directly caring for your mother off of you. This is a job for people who are used to dealing with folks with dementia and who are not ill themselves. You may be able to handle it for a little while, but the stress is bound to catch up with you and make your symptoms worse.

    Take good care of yourself!


  4. ChungieDolor

    ChungieDolor New Member

    Thanks stillfighting. I like your name, and thought I had gotten to the point that I am still fighting this dd, but when we first heard of dads diagnosis, all the cards started to fall down. Tried to remain strong for my dad and the family as difficult.

    I have had this dd since 98, and have missed lots of gatherings because of it. Thy know I can not commit to much, since everyday or moment is different. Feel fine one minute and then bam! One of the sisters had taken me to a doctors appointment a couple of years ago, and I could barely walk, racked with pain!

    I think my sisters are aware of this dd, but really can not conceive what we go through. People have to experience this dd for themselves to know what we go through. Only, I would not wish this on my worse enemy! My poor father used to say that when my family used to try to get him to eat when he could not.

    And I think you are correct saying that since I am home most of the time, I can be a caregiver for my mom during the day, 5 days a week.

    If they could understand that this is not some kind of vacation and that I would gladly work two jobs if I could.

    In my lifetime, I hope they come up with a cause for this dd, rather then a lot of theories, so that people know that we are truly sick, and not slackers!

    Thanks for listening, what a stressful situation!

  5. sassykat

    sassykat New Member

    I'm so sorry for the dilema you find yourself in. My father fell and hit his head five years ago, resulting in a massive subdeural hematoma, and a stroke. He was 76, and life as he knew it was over. His companion of 32 years up and left, leaving me to be solely responsable for his well being. Without going into details, it has been the most horrific five years of my life. I was first diagnosed with hypothyroid, then hypertention, and now fibro...and as you are aware all elevated by stress. The best advice I can give you, is have a meeting with your family members, and if your Mom has been diagnosed with dementia, a doctor will verify that info to help you to get POW of her finances. That will enable all of you to get care givers or discuse the possibility of Nursing Homes. It's a tough call whatever you decide. I wouldn't wish this responsability on anyone. My prayers are with you.
  6. Sheila1366

    Sheila1366 New Member

    I am so sorry for you and your loss and fir what your whole family is going through.The stress is not good for anyone especially you.

    Have you and your sisters considered your mother moving into a retirement home?I wonder how your mom would feel about that.She sounds very independent.

    Don't feel bad.You can only do what you can.I know you said your sister works with a friends that has fibro.But everyone has different symptoms and the pain and fatigue varies.It's not fair if your sister is comparing you to her friend.

    Your plate is full.

    I am glad you are gonna get some help from the hospice center.It's good to talk about these things.Lossing a parent is not easy and takes time to except.

    And you just keep coming here and share you feelings,good or bad.That is what we are here for.

    Take care and rest,

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