Hi,
I'm dying of a degenerative brain disease. I recently was diagnosed. The doctor thinks I've had it for maybe five years and the average life span after diagnosis is 3-5 years but the doctor told me I could die sooner or later. There is just no way of knowing. We had to move so I had to make an appointment with a doctor who does research about this disease in the area where I live now. His office called and changed my appointment from October to December which is upsetting to me.
I have had a chronic pain disorder for years that has left me disabled but I wasn't prepared to have a terminal illness. Who is?
There are some relationships with some family members that I had hoped eventually would get better over time. Unfortunately, since I have found out I was dying, they are worse instead of better.
I thought my family would at least accept the fact that I was dying, that there are many things I can't do, and after I explained to them about my condition they would understand why I sometimes seem apathetic (it is a symptom of my disease), the fact that I can't drive a car anymore, the reason why I seem so sleepy during the day (I don't get any sleep at night and these sleepy times are actually sometimes altered states that are sort of like absence seizures.)
I did not ask any of them to do anything for me, like cleaning up after me, taking me places, feeding me or helping me with activities of daily living because my husband does all of that and he does it well.
I didn't even ask for them to come visit me although they initially asked me what they could do and said keeping in touch or visiting with me would help.
We were living in another part of the United States so I didn't see my relatives very much. Everything seemed okay because mostly we kept in touch by phone on a regular basis.
I really loved where we were living. My son would visit us in the summers and he was very happy there also. His best friend lives there.
Unfortunately, right before the big employment crisis, my husband got laid off from his job because the company he was working for lost their federal contract. He got two job offers and one of them was near where most of our family lived. Also, my ex was moving back to the same area with my son and my daughter was moving back with her husband to a military base that was close enough for a day visit.
At first, I thought this was very fortunate. We moved in with my parents until we could find a place. After two weeks, the recession hit and my husband got laid off from his job so we had to continue living with my parents. After four months he got a job and we planned to move as soon as his initial 3 month contract was over and they renewed his contract. We thought that this would be no problem because he was working for a very large stable company. In April, they laid off thousands of employees. Then they laid off all of their contractors in his division at the end of May.
So, we still stayed with my parents. I thought since I was a grown woman with a grandchild that my parents would treat me like an adult and respect my privacy etc. That did not happen. It was like I was back in high school. I have to sleep in a recliner chair because I cannot sleep in a bed so I spent all my time in a tiny room that had two recliners and a television. I had to keep the door open most of the time for ventilation. My husband stayed up stairs in the guest bedroom.
At first everything was okay. They told me to tell them if there was anything they could do, etc. But after awhile, my mother started invading my boundaries just like she did when I was growing up. To make things worse, she also did this to my husband.
She didn't like the way that my husband had put papers on one side of the bed. We had no room so he had to put them somewhere. she went in the room, went through all the papers and rearranged all of them.
He was not to happy about it. Then she told him she was being helpful and he told her that wasn't particularly helpful because he didn't know where anything was. She went to my father and cried and my father came in to the room and shouted at my husband that if he didn't like it he could get out.
My father and I have had a distant relationship for many years. We were told how my father felt about things by my mother. When I had a crisis, he would not speak to me.
One thing I became very aware of while I was staying there is that my father said only a few words here and there to me but when my brother came over, he would have great conversations with him. I asked my father to talk to me more because I pointed out that I was dying but he didn't.
After the incident with the papers, my father didn't speak to my husband again.
Then my mother started coming in to where I was at whenever she wanted. If I had the door closed she would get mad and open it. One time when my husband was trying to give me a bed bath she got furious because he had tied the doors closed. She also would wait until it was time for my husband to come home and she would go upstairs and sit at the computer that was in the room so he couldn't change his clothes for awhile. A couple of times, one or the other of them locked the door to the garage so he couldn't get in and I had to get up to let him in.
Every day, I heard them at the kitchen table. My mother would gripe about my husband doing this or that. She also griped about him sitting in her recliner. They had an entire living room plus a bedroom to sit in and if they would have come to us, we would have made arrangements to accomadate her.
She would also come in and wake me up or insist on talking to me when I wasn't feeling well. She was receiving physical therapy for her problems and she decided that is what I needed although I told her I had done it before, it didn't help and my doctor had said recently that it probably wouldn't be a good idea because it would agravate my neurological pain condition.
One day I heard her say that she had put a bag on the recliner where my husband sat and she had to get it off or he would be really mad when he got home. I was upset and tired so I walked into the kitchen and told both of them that I was sick of the constant picking on my husband, lack of privacy, etc.
My mom started crying and my dad came back to the little room where I stayed and yelled at me. Then he told me they were having company and I had better stay in the room with the door shut and not say a word.
Later he came in and clumsily apologized because my mom told him to. As he bent down to kiss me, he saw my methadone bottle and griped at me that I better get off that stuff because I was going to end up like Anna Nicole Smith. I reminded him I was going to one of the top pain clinics in the country but he wouldn't listen.
Not long after that, my mom had toe surgery and she was being very difficult. My father couldn't handle her and he wouldn't ask my husband for help. She had a reaction to the pain medication and went into the guest bedroom where my husband took a shower, etc. and urinated all over everything and didn't clean it up. It took days for her to come back to her senses if that is what one would call her current state of mind.
She griped at my father all the time because she said she couldn't come down the stairs and that if she came down the stairs she couldn't sit in her recliner because my husband was there.
They had been considering moving to a retirement community but my mom decided the apartments were too small so she said they were going to look for another house. One weekend my dad took her to look at a retirement community. A few days after that they got into a big argument because she said she couldn't go down the stairs and the apartment at the retirement community was too small. The next day he told her that he had put down a deposit on one of the apartments and they were moving and that was that even though they hadn't sold their house. They told us we had to move out by the end of the week. They did not offer to let us stay in their house even though it is still vacant 4 months later.
Then we moved to my husband's mothers house. His sister and her daughter were also staying there even though they had been living rent free in an older house their mother owned, she said she had to move into her mother's house because her mother needed help. His sister had managed to get power of attorney. The agreement was that we would fix up the other older house and move into it. Also, my husband would help take care of his mother.
We soon realized his mother was incompetent and she was not in a safe environment. They had a child proof lock on the door that led out to the den but his niece propped it open because she didn't want to hear her grandmother banging on the door to try to get out.
We were sleeping in the den and several times I caught their mother with her purse trying to go out in the middle of the night.
Also she would get up and turn the stove and the burners on and she also wandered outside where there were stairs. It was out in the country so there were quite a few spiders, snakes, and scorpians.
When his sister asked us to move in she thought that her daughter was moving to another town. That didn't work out and her daughter started having shouting fits that she wanted to move into the other house and she didn't want for us to move over there and leave her to take care of her grandmother. This woman is in her early twenties and she sits in her room all day and does nothing.
My dh's sister stopped helping us fix up the old house. She and her daughter would leave in the morning and not come back until late afternoon leaving my husband to take care of his mother and me.
My husband found out that she had taken a huge amount of money out of her mother's account to fix up the house that she would eventually inherit.
Then we found out that neither of them had any intention of going back to work and they were planning on living on the mother's money until she died then getting the inheritance included a house and property.
My husband pointed out to his sister that there needed to be a competentcy hearing for his mother. That would mean his sister would lose her power of attorney and might not be appointed guardian.
So then hia wanted us out of the house. She also said that I was too much trouble although I had rarely asked her for anything. She started picking fights with my husband and her daughter started doing things that she knew would make me uncomfortable. Her daughter said that I was being spoiled and I obviously wasn't that sick because I could carry on a conversation. Finally we left there.
Now we are staying with other relatives and we are in a better situation but we have no privacy, etc. I don't know when my husband will get a job. He is in a field that he services were always in demand but things have changed. He hasn't had one interview in months.
I know I am pouring my heart out here and this is long but I really don't have anyone to talk to but my husband and he is already overloaded.
As I said my daughter moved to the area but she hasn't been to visit me anywhere that I lived since she was 13. It is a long story which I won't get into but it involves her stepfather. She has made me feel like I have chosen my husband over her but he is a good man and he is the person that has provided the money to give her support for many years even though she won't talk to him.
After she grew up, we weren't living near each other and it got to the point I couldn't travel to see her but we talked regularly and we got along fairly well.
Since we have all moved back to this area, I have seen her twice. She is polite but distant. My ex has told the children that he would never marry because he wanted to devote his time and love to them. The fact is that he tried to date several women after we split up but he couldn't find a woman who made a decent income who didn't have children and or didn't want more children.
It seems like my kids are brainwashed. After children get to be a certain age it is normal for them to realize their parent isn't perfect and to gripe at least occasionally about something their parent has done but my children never complain about their father although he has caused much hardship in their lives and they get irritated with me even if I try to state a fact about their father that puts him in an unflattering light.
But with me, they will let me know if they think I am saying something wrong. My daughter has told everyone she grew up without a mother and she's told me that she has forgiven me now but we will work out our problems in another life or in heaven.
She left her husband recently and she wouldn't tell me why. My son told me some things and it just doesn't seem reasonable for her to leave. She has no training and she dropped out of college.
Recently, she had a birthday party for my grandson and she invited everyone in the family except me. I asked her why she hadn't invited me and she said she thought I would be too sick to come anyway.
My son loves his sister very much and I am glad about that. But, he use to understand that she had a high temper and she could be difficult to get along with. Last month he was still telling me that he liked her husband and he was a good father. Now he says he does not like her husband and he isn't a good father. The only thing that I know of that caused problems with their marriage was that he wanted to go to medical school after he gets out of the military and my daughter thought he isn't making enough money. This doesn't sound like reason to stop liking someone and decide that he is a bad parent.
I told my son I was concerned about his sister and her son and soon to be baby. He said that plenty of women raise children on their own and that his family would be there to help her and he made it clear that he meant his father and him.
Ever since I left their father, my daughter has excluded me from what she refers to as her family. She has made it clear that her family is her dad, her brother and her kids.
Now, my son seems to be doing this also. I know that he loves me and he sees me on a regular basis but there is a clear unspoken message that both of my children let me know in many different ways. Since I left their father and stayed with my husband, I am not part of their nuclear family. They both have said they are so grateful for their father raising them when in reality I was their primary parent until I left and if I hadn't been having to support the family because their father wouldn't and pay child support and all their other expenses after I left, I might have had a chance at getting a good attorney and getting to be custodial parent. I have had joint custody of them for years. When they were growing up I saw them all the time, I was involved in their lives. After I became ill 10 years ago, I couldn't work and my husband started financially supporting them as well as both of us giving much time and effort to support them in whatever they wanted to do.
Their father has let them go without basic things over the years because he had a failed business he wouldn't let go of and then he let his professional licsense expire so when he did get a job he couldn't make as much money.
My husband was there to provide financial support so they could have clothes, shoes, lessons,trips, etc. My son use to really appreciate it but in the past year he seems less grateful and tells me more often that he doesn't like my husband. He has known my husband since he was three. He use to call him old dad but now he states that he is certainly not his father and that I've pushed him in the past to make him call him dad. I only asked him once to do that and that was years ago when he had been calling him old dad and suddenly stopped.
It just seems that my relationships with my family members have gotten worse since I found out I was dying. For awhile, I was able to step away from all of this and accept that this is the way things are, I need to concentrate on taking care of myself and I was spending much more time preparing myself for my journey beyond life.
I don't know why I have fallen back into being so upset about these relationships. Perhaps it is because we have had to stay with family and it doesn't look like we will be able to get our own place anytime soon.
For those of you that have stayed with me through this post thank you very much.
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Relationships
Dying and coming to terms with relationships
3 replies
mersilkee · 15/09/2009 15:28
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