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Things getting on top of me and pain so bad.
8 Replies
fibromite.u.k. - March 27

I am having such a bad time with pain at the moment, it is throbbing and so painful all over, but especially in my fingers, toes, hips, knees and legs. Also the joint on my big toe is very red and so are some of the joints on my fingers.I also keep getting headaches and this is the worst I have felt for a long time. I am having various tests too as my rhemy thinks I may have rheumatoid arthritis. I also have many other health issues, such as asthma, migraines, eczema, a hiatus hernia, high blood pressure, CFS and underactive thyroid and other issues.

I am also very tired of trying to cope with my father of almost 90. He is in very bad health but refuses to even consider a nursing home. He was in hospital for seven weeks after several falls at home over two days. He wears an emergency button on a cord around his neck and we are always getting called out because he has fallen over. Last week, he was moved into a rehab nursing home, which is where they put people between hospital and home. However, he is not trying to walk and help himself, but instead, justs sits in a chair or lays in bed and keeps pressing the call button to call in the nurses to do such things as to get him a drink or put a blanket round him, which he is certainly capable of doing for himself. They can only be in this place for up to six weeks and are then sent home. He is a very stubborn man and can be very nasty, swearing at me and others too, and there have been many other people who have remarks on how he can be.

My husband is very good and looks after me well, but he retired last November and we thought that we would have time to relax together and maybe go out a bit. Instead of this, my husband has been having to rush about seeing to my father and he is getting really fed-up with it. As he says, he married me and is happy to take care of me, but he didn't sign up to look after my Dad too. I can't really do much for him, except for handling his money, seeing he gets to appointments and organising his carers (who come in twice a day)and his cleaner and ordering his meals.

I just feel that I can't handle this anymore and don't know what to do. Maybe I just need a few kind words. I do wonder what others would do in my situation. Just to add something else, he has never been what I would call a loving father and has always picked on me. I am the only child, so have no one else to help with this. My mother died ten years ago.


Noca - March 27

You sound like a solider, helping your father even though it sounds like he doesn't deserve it and regardless of your health. You are also lucky to have a husband who loves and cares about you. I don't think you're doing anything wrong. I would like to think I would do the same in your position.

((((hugsz))) Keep your head up


January - March 27

Dear Fibromite - I have been in your position, caring for a very abusive elderly parent, while I worked and went to school also. She would not even allow a caretaker to come in and help out. Keeping a relationship was impossible and nobody else in my family helped one bit. It was ALL on me.

I did it until I was to the point of collapse - and then I had to put my parent in a nursing home. I wish I had placed her earlier. She never appreciated one single thing I did for her, and cussed me out continuously. The first week there, she beat up a nurse's aide. Your father might have some dementia on top of his physical problems. If so, you can't reason with him, and he can't control himself. He has had a life, and you have been good to him, even though he doesn't deserve it. Before you kill yourself and your marriage, try to place him somewhere. You can still manage his affairs and visit him and watch out for him - but you will have a huge burden of stress taken off you and your husband. You have done enough already for someone who treats you badly; don't jeopardize your marriage.

f you have a power of attorney, there might be provisions in it. If in the US, you will need to have him evaluated and declared incompetent by 2 or 3 doctors.

A lot of fibro people have suffered lifelong at the hands of child abusers. There comes a point when you have to walk away from it, and that is the healthy thing to do. It is NOT OK to abuse children and then expect them to take care of you. Being a caregiver is a burden for anyone, even when it's done with love. Most people do it because they are sustained by love. I had one marvelous parent and I was happy to care for him when he was ill. But I had one monster, who was always abusive, and at this point, I think that if your parent has always been very abusive, he or she has no right to expect anything from you. (And don't judge until you've walked in these shoes! Even monsters can and do have children.)

Good luck to you dear, I'm sorry it's a bad situation, but you don't owe this angry, abusive man anything. Take care of yourself, and find an appropriate home for him, away from you.


fibromite.u.k. - March 27

Dear January and Noca, thank-you so much for your kind words, it has helped me a lot to know that people don't think badly of me. To make things even worse (and I didn't mention this before), my mother was even worse than my father is, and was impossible to please, and during my childhood, my father turned a blind eye to how emotionally abusive she was to me.

I really think that my father has early dementia had he has got a lot worse in the last few years, but the doctors all say it is just age-related memory loss. He is also very deaf and refuses to wear hearing aids, so he can't hear me very well and he shouts all the time. It is so embarassing, as he shouts about how he doesn't like a nurse or patient etc when they are very close and can obviously hear him. He is also a racist and I really can't bear that and I am totally the opposite of this. My son refuses to visit him now as he hates the way he speaks and swears.

It is getting to the stage when I feel that tears are never far away from me and I really don't want to visit him at all. My husband is so good to me and I don't want him to be worn out and get down about my father.

I personally think that a home is the answer, but in the U.K. you can't just put him in one if he refuses to go, unless a doctor says he is too demented to live on his own, so it is a real problem. My friends say that he needs to be in a home. He does do very strange things such as hoarding things and buying things he doesn't need or can use, such as jig-saws which he has never liked to do, children's soft toys which are all over the house, broken things that others have thrown out. He will buy things that are on a special offer, even if he doesn't want them. My husband and myself have to keep going up to his house (and try to pick a time when we know he will be out) and clear out boxes of rubbish, which he never misses as he really doesn't know what he has got. For instance he has 14 clocks in one room and then worries us to get one mended if it stops! As fast as we clear some spaces, he buys more stuff and fills the spaces. It is a nightmare. Still, writing all this down is helping a bit and it must sound funny to you to read it.

I will try to keep you posted, if I don't lose my mind with worry and pain.


January - March 27

Dear fibromite - I really feel for you. I know how it is.

Perhaps you can find an attorney or an agency that specializes in the care of elderly people and get some advice on how to have your father evaluated. You may have to go to court, but it sounds like you have many witnesses to his behavior who will back you up. You should be documenting the problems and taking pictures for evidence. Perhaps they can send a doctor out to his home to evaluate him. It sounds like he needs 24-hour supervision. I don't know how it works legally in the UK. It's difficult, as it should be - no one should be unfairly put in a home if they can live on their own. But it sounds like he can't do that. Also, clearly let them know you have your own physical (and emotional) problems and can no longer care for him, and that his abuse is affecting your health and marriage. The stress must be so hard on you. Perhaps your own doctors can back you up on that, so make sure you have your emotional distress documented too. Child abuse is for real, and you should not have to endure it forever. You have some rights too.

And you know, there may be some people who will criticize you - but they aren't living your life. Your friends who have seen the situation will understand. I hope you will concentrate on staying healthy and keeping your marriage happy. You deserve it after all this time.

There is a wonderful therapist named Alice Miller - she will come right up if you google her. I've read some of her work, and she is very good about helping people stand up for themselves against cruel parents. You don't have to forgive horrible treatment - unless and until you're ready. It's not "noble" to stay in any kind of abusive situation. It's OK to take care of yourself, especially so if your parents DIDN'T take care of you properly!

Hope you get some help soon to get out from under this horrible situation.


Fantod - March 28

fibromite.u.k. - My heart goes out to you. You are already having such a difficult time with your health issues. Having the stress of a parent who is manipulative and abusive on top of it would kill most people.

Your father needs to go to a home. You've cited some excellent reasons in your posts: frequent falls, hoarding, refusing to see to his own needs, memory issues, spending money indiscriminately on items that are not age appropriate, and abusive behavior. He needs to be in a professional setting where he can be monitored around the clock.

You need to do whatever is necessary legally to get him into a facility as soon as possible. You can also cite your own health issues as you are an only child with no other siblings to assume or share the burden.

You absolutely should not feel guilty about any of this. Like millions of other people, you are experiencing role reversal. The parent becomes the child and you become the parent. You are acting in his best interests. And, when everything is done in the words of the immortal Beatles - let it be.


fibromite.u.k. - April 5

Hi January and Fantad, thank-you so much for your helpful and kind words. I have now been diagnosed with Rheumatoid Arthritis on top of fibromyagia and all my other health problems and have also just had to start taking warfarin to thin my blood as I have Hughes Syndrome. I am very unwell just now and am back on steroids as the pain all over me has become unbearable and I think that all the worry with my Dad is making things even worse. I am not sleeping at all well at night, and yet can fall asleep as soon as I sit down during the day. It is so annoying as I can't even seem to sit through a TV programme without falling asleep! My asthma seems to be bad at the moment too and sometimes I seem to catch my breath and start coughing as I am almost asleep which completely wakes me up again.

Meanwhile, my father has finally been diagnosed as having dementia and is having more assesments about whether he is going to be safe in going home, but it seems likely that the outcome will be that we have to find a home for him. I think this will be for the best as he is doing some very strange things. I found out recently that a friend had seen him in the middle of the road waving down people in cars and asking them to give him lifts to his bank. The mind boggles as what could happen to him. However, this means more work for myself and my husband as we will have to move him into the home (when we find one that will take him) and then clear out his house and try to sell it to pay for his care in the home. I am struggling so much just now, that I wonder how on earth I will cope with it, and really don't want to leave it to my husband to do everything.

We visited him at the weekend and he was moaning about everything and when one of the nurses came in, she remarked on how he moans all the time and is too fussy about everything. After all this, two friends of his turned up to visit him, and he changed immediately and became very nice and sat like a poor little old man who would not have butter melt in his mouth. Sometimes, he seems to be like Jeckell and Hyde, with how he can change.

Anyway, I thought you would like an update and I am so glad to have friends here who I can talk to.


Fantod - April 5

I was just thinking about you yesterday wondering how things were going.

It seems that there is finally some light at the end of the tunnel. You now know why you are in so much pain. And, your father has finally been diagnosed with dementia. You might not think so at the moment, but these are positive things. You are going to get the medical help needed to feel much better. Your father is going to be in a safe setting where he can be monitored around the clock. You are also going to get your life back and not have to be worried about what he is doing, whether he has fallen again, or when he is going to call about one of his clocks or something else that he wants addressed immediately.

Can you afford to get some help with sorting out his home and the moving? Under ideal circumstances, that is a lot to manage. The sooner you can get out from under all of this drama the better. If you can do it, it might be better to pay a service to help and just get it done and over with.

Overall, I think that things are finally headed in the right direction. It is no wonder that you fall asleep in the middle of a TV programme. I would too, what with your pain levels and emotional stress. Spring is coming and things are going to get much, much better. Keep your chin up. Take care.


kvc33 - April 5

I'm also glad that things are moving forward for you. I could smack those stupid doctors for saying that his memory loss was just age-related. Old people don't do weird things such as you described unless they have dementia or a serious mental health problem. I am seeing far too many elderly people who should have been in care years ago and are still at home. A lot of it comes from denial, stubbornness and poor planning on their part. They need to appoint a power of attorney BEFORE they become incompetent and make decisions about where they would like to go for their senior years. A facility that offers various levels of care is best because they can keep their independence while they can and then move up to a higher level of care when they need it. We need to really start educating seniors and their families about this. I've told my mother that she will most likely end up in care one day and if she needs it, she IS going. I will not subject myself or any other family member to such nonsense. As for the house clean out, please take Fantod's advice and hire someone to help out, even if it's just to give the place a thorough cleaning. Decide before hand if there are things of value that you would like to keep and make a list, have a removal company come and take the rest away. There are realtors and others who specialize in dealing with helping someone transition to a care home and getting a house ready for sale. Seek them out, you will need their understanding and patience.



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