Hi, not sure that I want to do this but I'm finding it difficult to accept and I guess that why I have gone this far and writing this. I don't normally write on forums etc but maybe someone somewhere might know how we feel.
My mum is 68 yrs old. Last week she was diagnosed with cbd and was told there's no cure. Her left arm is not working just stiff and locked against the side of her body. It has been like that for 2 years. We have taken her to many doctors here and even abroad private and nhs but only only now we know what is wrong with her. My mum's speech has slowed down she is wretching when she eats. We will have to sell her home I guess to pay for her care. She deserves the best because she worked so hard raising 4 children and putting up with an alcoholic husband for 25 yrs and all that comes with it. My mum worked so hard for her house but i never was that good of a man to earn lots of money to take care of my mum now she has cbd and needs me. I moved out with wife and young son for better life for My son but maybe should have stayed. My mum did not ever read or write yet she Still raised 4 children. She was the most loving and caring person you can meet none of her children or grandchildren could do wrong in her eyes. I cannot help her now. She asks me why doesn't my leg work properly or what is happening to her. She says why Don't i visit her anymore. I try to visit as much as possible I live 40 minutes away and have a young child. I know where it's gonna end but I find it hard to accept all the suffering she will go through until then. I'm worried about how I'll react when I see her breaking down slowly. I don't know how I'm going to cope if I'm honest. It's hard to concentrate at work. I'm worried it will affect me being a good dad. I'm scared if I'm honest. My world has turned in a bad way.
I'm losing my mum in a slow and horrible way. I feel Iike My mum didn't deserve this. Nobody can her get better not even her son. I don't know what to do.
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Iwantoaccept
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Hi, I am so sorry that your mom has been dx with cbd. I do think you have made a wise decision to write on this site..........for you will learn lots here. First, I think it would be helpful if you would identify in what country you live. I am guessing UK since you call your mom mum.
I live in Los Angeles, CA, USA. I am the 77 year old mom of a barely 55 year old son who died of PSP (not cbd) May 4, 2017. There are many on this site who are caretakers for loved ones with cbd. My son's story can be read on my post PARKINSON'S TO PSP.
I would take time to get acquainted with this site. Learn how it works. At the top you will see a "Search PSP Association" bar. Write in what interests you. I would suggest cbd. What will come up are shares on cbd. There are a few people living with cbd who write their progress and everyday life. The posts come from all over the world.
As a mom, if you were my son, I would tell you that I have no regrets for the choices I made as a mom, and that it burdens me that you are feeling so guilty. I do not know the relationship you have with your mom. For me, with my son, I always tried to be honest with him.....not by bringing up unsolicited information, but by answering questions truthfully. When your mum asks why her leg is not working properly, you might want to tell her that she has an illness that does this. Answer short and simple. If she asks for more information I would answer. But like I said, I do not know how comfortable either of you are with sensitive issues.
If you sell your mom's house remember that the proceeds will go back to HER...to her care. That is admirable.
You will get guidance if you start to read the posts on what others in your situation have done, and what services there are for cbd.
Oh so sorry to hear about your mum, but you have done the wise things and come to the blog, there are so many lovely people on here, they can help you like they help all of us, my husband has psp, but there are many that have cbd. Has she got careers that go into look after her? Has she got a social worker? You must be in the uk because you mentioned NHS. If she hasn’t a social worker get the ball rolling and get her assessed as soon as possible. Don’t put yourself down, you are doing what you can and visiting when possible, there will be many people on here that will support you, without these lovely people I would of given up a long time ago. Tell us where you mum lives there might be others living near her, that can help. Sending you a big hug I think you need it. Yvonne xxxxx
What a brave post! You are most definitely on the right site - we do share everything here - even our darkest fears and even our ugly moods None of us have the ability to take away the awful disease from our loved ones - but what we can do is support each other! We listen, we understand, we commiserate, we offer points of view, sometimes we can even have a laugh. Because we hold each other up, we are able to give our best selves to our patient loved ones.
I am the wife of a CBD sufferer. Although when you first hear the worst of this disease you might despair, realize there are people living with it who ARE living a life. Look up our member Bargiepat - he has been living with CBD for 5 or so years, and he still can be independent, travels and has a rich family life. Cameoboy, Mamapiggle, Aprilfool, BrenB, Taihde, Val1425 and others are all CBD patients who contribute to this site and are living their lives.
I know not everyone progresses at the same rate. I don't know if your mum is progressing quickly or not. But don't despair - there is help for most all the symptoms of CBD and a search of the historic posts here will help you find advice on them. Some of the CBD patients are able to live on their own with Home Support care workers coming in regularly. Will this be possible for your mum? I know the country you live in will have a lot to do with what health and social benefits you may draw upon.
Tell us more when you feel like it - but please: Don't Beat Yourself Up! No disparaging yourself for not being enough of a whatever to make a pile of dough to look after your mum! Most of us never could be in that position!! Believe that you will offer the best support you can to your mum so she can make the right choices for herself. You cannot ignore your own nuclear family, no matter how much you respect and sympathize with your mum.
Take a deep breath, make a point of thinking how you are going to deal with YOUR stress as a caregiver/family member, and try to get your mum out to do some nice things that will give her good memories before she loses too much mobility or cognition.
Sorry for the long lecture We have been where you are -and we are here to tell you that you can get through this!
You are clearly very loving and a good person. Your world has been turned upside down and it all seems muddled and impossible. Many of us here have been through that phase.
First off, as Yvonne says, telephone social services, ask for an assessment of need for your mother and emphasise the urgency. Make sure you are at the assessment, you will learn a lot and should then have a clearer perspective.
Please do not put the home on the market yet. Social Care is means tested and the house is not included in that, if there are close family members living there also. Neither is her pension, just savings. Social Services will put the care in place and fund it as per the means assessment. The means assessment is not the needs assessment BTW. They are different.
If you are finding your emotions are all over the place consider going to the GP for some anxiolytic medication. Not a benzodiazepine which are sedating, but an SSRI, such as citalopram, which will steady you up a little and not cause drowsiness after a few days of adjustment to it. It is only while you find your feet.
The diagnosis is not the end. She is still there and there is much she can share as a mother and a grand mother.
When you feel up to it have a read of the PSP Assoc. website, if you have not done so already. Knowledge will light your way with this illness.
They have local reps. in some areas of the country. Why not ask for a meeting with one in your area? The ones I have met are very knowledgeable and supportive. Telephone the Helpline and ask?
0300 0110 122
You are facing a big change. The issue is about adjusting to these changes and that means learning about what is going on and getting support and resources in place.
So you might want to ask that Social Worker for and Occupational Therapist Assessment too. They will put rails and other fittings in place and lend equipment like wheelchairs and so forth. Don't skip this, you will be amazed at the stuff they can put in place and it is all free of charge.
Welcome to this site. It will support you when no-one else can.
My husband died from PSP 8 months ago. I remember feeling as you do when he was diagnosed.
The practical suggestions above are good ones. You will feel useful. Counselling would help you to accept your feelings.
Everyone here identifies with the concerns you express. Its so hard to accept the inevitable death of a loved one [ and ourselves !]. Its hard to accept how helpless we are. The most important thing is supporting her by loving her and doing what you can.
Good luck.
love from Jean x
So glad you wrote. Everyone here knows how you feel. They will all be more than happy to tell you anything they know about the disease or dealing with symptoms. I see Kevin has given you an outline to deal with social services. There is help available. Use it.
Thanks for sharing. I am impressed and sorry. I agree with you, your mother has not deserved this. Nobody deserves it but according to her story it seems even more cruel.
Our experience is with PSP that looks like CBD but it is not the same. I send our experiences by internal mail.
In the chat there are people who have special experience in CBD and will sure they inform you.
A hug and courage.
Luis
Hello Iwantoaccept,
I was so sorry to read your message, it was so sad and you find yourself in a position which so many of us on this site have experienced or are experiencing now. Already I see that some members have sent you some very good advice and offered some comfort. I think the only thing I can add is to say please tell your mother how much you love her. Tell her how much you appreciate what she has done and achieved in her life to bring up you four children. Hug her if you can and just reassure her of your love and do your best to minimise her suffering. She needs to know how much she is loved. That is the most important thing, her material goods will seem insignificant to that in the end. Could she come to live closer to you perhaps so it would be easier for visits?
I'm so sorry your mum has been diagnosed with cbd. This is a wonderful site full of people with who can advice and support . There will be tears along the way but it is possible to have laughter Too! X
Dear “iwantoaccept” ... your name could be any of our names. We all want to accept the news but I don’t know that we ever do. Speaking for myself, I know that there is always a part of me that wishes life was the way I dreamed it would be at this stage of my and my husband’s lives. Even wishing it was just plain ol’ Parkinson’s.
You’ve received some great recommendations/ideas and, hopefully, you’ve felt the love and support from others who are/were where you are.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
None of us have the ability to take away the awful disease from our loved ones - but what we can do is support each other! We listen, we understand, we commiserate, we offer points of view, sometimes we can even have a laugh. Because we hold each other up, we are able to give our best selves to our patient loved ones.
We have been where you are -and we are here to tell you that you can get through this!
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