I am new to this site but not new to care giving for my 64 year old mother who was diagnosed 15 years ago with ms.
I decided to stay home and help/care for her as my brother left the family years ago. And my dad has done camp work most of his life and now unemployed not his choice.
What i have found through out the years and now getting to the extreme side of things is my mother being extremely negitive and complains about anything and everything. And iam to the point where its been affecting my life i have chronic fatigue sydrome as well as bunch of other problems. If i get out to do shoping she complains as i get to go out but she dosent. If i am able to go away which these days its a weekend out of a year she complains about that. I dont have a life no friends no nothing. As she needs care 24/7 as she is now in a powerchair all the time. And i know she is frusterated cause of that..but to be bitter about anyone who can walk or do things its getting horrible. My dad is no help as he cant take the constint put downs from her saying hes a losser and no good for nothing.. as we now are in finicial problems. And thats another one of her problems as she just wants to buy and buy and buy and now she cant. As figured thats the only control left she had was shopping via internet shopping etc. Not able to take her out very much due to fact we have no money plus she has pretty bad back pain and just cant be in the car for very long.
I really have not a clue how to deal with this...i cant just leave them. As we do live on a small farm and i have horses etc..and my dad is unable or not wanting to help out or her out..its been left apon me to do this.
I have gone to a caregivers group but that has not been too helpfull just due to the fact all they say is hire someone etc but i can not aford such things. I have also seen a shrink and again not much help as no money.
I should say she has lost all her friends and no one visits due to she has nothing good to say..if she talks to her family she gets worse as they have money and they can go on vaction or they can do renos.
She is also very religous but i cant see it as she may pray etc but if she was really to live the faith she wouldent be so negitive or vile.
I am trying to stay positive as best i can saying oh look at such nice weather we are having. Or least we have a roof over our head etc...trying so hard with everything thrown back into my face with a negitive outlook. Now i try to stay away be in the barn take dogs for walks. But even thats hard as she needs help at times during the day so not able to be gone for long cause of that. Iam finding it very hard these days as my health going downhill at a fast rate. And i really dont know what to do anymore. As have no help or money to get help.
If anyone has any ideas at all please let me know.
I do figure one of these days will have to sell the place and iam sure at that time she be living in a place that cares for her...just she smokes and places around here will not take her...as few years back when we had money i sent her to place in town for a week every year. They had told me the last time she is not welcome untill she quits smoking. Sorry for the long post just really needed to vent its been a bad day
My own Dad is helplessly clueless about anything that has to do with women's health. Which means he doesn't pay attention to my Mom's health or my health. Total opposite from my sig other who as soon as a doctor diagnoses a problem with me, he's on the computer looking up all the information he can find to learn about it.
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I hope the disability will go through for you. I know it would help, even though you don't need much. Our lives as caregivers can be so uncertain. It's always nice to have a little cushion to call our own.
And the horses are whats keeping me sane. I havent been able to work for 4 years due to my own health problems before that i manly worked for myself did jobs for people if that was renos or fixin fences custom haying etc ...as i had to work around my mom and have my own hours..once my health went downhill and my mothers went down hill ...i have been home to care for her and try keep things going house work..yard work etc..least my dad does help with that. My dad is type of person who cant or wont understand a illness. Plus you have to think when someone is bickering with you all the time you really dont want to be around them. I get why he is like that..i am little different as can understand a little what my mom is going through. Plus i think better at trying to see the positive in things. Just at times like today she was able to drag me down in a sense. She was never a happy person even before she could not walk was always in the thinking the grass is greener on the other side. The no money thing dosent bother me as much as her. I have been a saver all my life ..live simple dont need much to be happy. I dont really think of the future i know i should but for me its day by day. For dreams i always wanted to be married etc...just never have had the time to go out meet men. One day iam sure something would happen..i figure if can get my health under control id go back working again doing odd jobs always enjoyed that.
As for the smoking ya she smokes a bit same as dad..and iam currently almost quit down to odd smoke every couple days. I am needing to quit as docs say that can possibly help my cfs if i quit. Smoke dosent bother me prob cause have always been around it.
It also doesn't help when they are so negative. My mother went through about three years of complaining all day. That was rough. I used to take comfort in the rabbits when it got so bad. They never complain except when I'm clipping nails or doing something else they find obnoxious. I was thinking that your horses are a comfort to you. Nothing as sweet as being with a horse that likes you.
I've heard that many people with MS do have personality problems. It must be something that goes along with the disease. I've only know one person with MS. She was very nice, but I don't know if she was with her family. I can sympathize with the pain and problems that go with MS, but it doesn't make dealing with a negative personality much easier.
One thing I wondered is what you are going to do to hold your own life together. You have sacrificed so much. Do you have dreams of what you would like to do? It can be hard to hold onto those dreams, but you are much too young to let your life slip by. Maybe it would be good to figure out what you would like to do and work at it as much as the CFS will allow. It's always nice to keep your own hope alive when people are trying to wear it down. Have you considered applying for disability for the CFS if it is bad enough. I heard it is hard to get with CFS, but it may help you until you are able to find your feet again.
Big hugs coming your way.
One of my best friends was diagnosed with MS when she was in her mid-30's and she took it in stride and was willing to try all different types of new treatments. She and her hubby always had a smile, they were learning to enjoy every day to the fullest. But not everyone can do that.
Since your Dad is out of work, he needs to step up to take care of his wife.... and you need to go out and find outside employment.