Carer for mum with CBD: Hello I'm quite new... - PSP Association

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Carer for mum with CBD

Bobbiejo21 profile image
24 Replies

Hello I'm quite new here never a post up. My mum was diagnosed with CBD last year with having symptoms atleast a year before that. I've been her full time carer for about 8 months now. Some days it's so hard I have two children my youngest is 2 and trying to juggle doing things and looking after him can be quite testing at times. I had never heard of this before so I googled it get information. I wish I hadn't as it upsets me daily knowing what's going to happen 😢

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Bobbiejo21
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honjen43 profile image
honjen43

Hi Bobbiejo, welcome to this caring site!

You sound as if you have a lot to manage. Have you got other family who can help take over part of the caring with you?

CBD, PSP & the other related illnesses do seem overwhelming to begin with, but then so does a diagnosis of cancer to any of us! What is documented on here shows that no 2 people experience the same progression. You will find many on this site fighting the same good fight, and getting on with life, difficult as it may be.

Agreed, there are not many here who are trying to raise such small children at the same time. Do what you can for yourself, your children and your mum! Look after yourself. Talk to your mum about her future and help her plan what she wants to do. Try and get carers involved early, as they will help you both.

I found the first few months the worst, when you don't know just what you are dealing with, what to do next, or how to go about it.

This site will help you both. If your mum is able, get her to join too. Most of us are carers, but many are sufferers, and contribute too. The support here is amazing and caring, and you will not feel so alone. You will find advice and understanding, whether you ask for it, or scream out with frustration. We have all been there. I see you are in the UK. Someone will respond soon and be able to help. They may even live nearby.

You will both be able to do this with our help!

Big hug.

Jen xxx

Bobbiejo21 profile image
Bobbiejo21 in reply to honjen43

Thank you for your reply. I have 3 brothers but I'm lucky if they c my mum every few months. I have a very supportive partner but caring for my mum is pretty much just me. As much as I've asked my brothers to help out more they work full time and have families too but even just one day a week would help me out. My mum knows the name of her condition but she doesn't know what is going to happen and doesn't want us to tell her. She just thinks her memory is going and is oblivious to anything else. She's aware of having alien hand and her balance isn't very good but the rest she doesn't know. It's so hard because I do but there's so much I have to keep quiet about as she doesn't want to know and I don't want to upset her. It's hard enough for me to deal with it so I don't know how she would cope. I'm in the process of finding her somewhere to live that's suitable which is proving very difficult

honjen43 profile image
honjen43 in reply to Bobbiejo21

My husband also seemed not to want to ask questions about his illness. Could just be part of the loss of sharpness.

As the only woman in the family, you will find the burden falls on you. That is why it will be of help to you if you can introduce a carer or two, so that it becomes a new normal. You can't do it all, no matter how hard you try! No-one except you will expect you to!!

Maybe ask your partner to take on more childcare, or look at nursery school or a part time nanny. I guess you won't want to do that, but it may be a help to your "sanity". And make sure your mum is as much involved with her grandchildren as she can be while she is able.

Suggest to your brothers that they visit more frequently while their mum can relate well to them, rather than asking them for help.

Hope you find somewhere that understands CBD. When CBD is so well known on this site, we tend to forget that it is a rare disease, that is not known generally by medics unless they have had reason to research it. Our doctor had to look it up too.

It is a daunting task, but you will handle it with the support from us here. Use this site to rant and rave, don't hold back! You should not keep it all to yourself. We who have been there will understand how you feel.

Hugs

Jen xxx

kenh1 profile image
kenh1

Welcome to this helpful site. If you are in the U.K. Get a carers assessment, your council has to provide this by law. Also though what you have read on the Internet is quite frightening, this site will ease those fears.

Best wishesKen.

Welcome to the site. My dad has CBD also, probably near year 6 now going back through past events. I was his sole care giver, my wife helped as she could, for over 3 years while juggling my family life also. At first it was more assistance type care then slowly evolved into 100% dependency care. The last year or so was very hard with his ever increasing needs and my family's needs. I did have carers that came in when I called them, to give me a break or when I had to be someplace but no one came daily. Eventually I couldn't juggle both anymore so after talking to dad and his doctors it was decided a nursing home was the only real option.

As always I would suggest you or someone in the family get Power of Attorney and Healthcare for you mom. I know in the US it's much easier to get these documents done while the person is still able to convey their desires.

As for telling him what was happening, the doctors explained the disease then I told him in layman's terms what was going on. My reasoning is it's his life and he should know what is happening to him and what may happen so he could make at least some decisions on important issues. Doing this has enabled him to decided on end of life care, PEG, etc. I know his wishes now and I can make sure they are carried out.

Ron

enjoysalud profile image
enjoysalud in reply to

Excellent reply...in my book.

My son died of PSP at 55 years, May 4, 2017. I am not familiar with CBD except for what I have read. Through my son's journey I LEARNED that reading and experiencing can be very different.

The neurological diseases + the personalities of those afflicted can cause a value crisis/conflict. If the afflicted is not brought into the discussion (as you shared) it can create unnecessary hurdles/obstacles for treatment and care . Are you choosing what the afflicted would want or what you want?

Does the person afflicted not want to know the truth because that is there outlook on life or is it brought about by the neurological changes of the brain?????

In addition, without input from the one afflicted, it can leave doubts, guilt, 2nd thoughts on decisions made by the carer. I for one, with TOTAL input from my son, found that to be true after the person has passed on. At least there is some comfort that the person suffering/afflicted had some input.

I miss my son tremendously....I found myself thinking that "this or that" would have kept him longer. As time goes by, I am able to let go more and more. Most importantly, that he got to choose (even If I disagreed). Without him hearing as close to the truth as was possible he would never have had important input and I would have a heavier burden than the grief I carry.

I think, in addition to personalities, that older generations outlooks were a bit different. My mom suffered a massive stroke, and frankly until the end wanted to hear nothing about prognosis, medication or care. My father was responsible for her. He often discussed "things" with me, my sister, and other family members. THE SHARING and FEEDBACK helped my father to NOT go it alone. My mom, against her loudest protests was put in a nursing home. My dad went EACH day from after breakfast, tho lunch, to just after dinner and spent each day with her....for two years.

We live in Los Angeles.............he had no insurance, and it took a HUGE toll on their savings. The choice was made easier because of him not having to make decision alone.

Blessings, Margarita

Willow_rob profile image
Willow_rob

Hi Bobbiejo21, l care for my wife who was diagnosed with PSP in November last. It is a full time job because she is unable to function on her own. I pay for a carer to come in for 2 hours on Monday, Wednesday and Friday to get her up, washed, dressed and downstairs which is a tremendous help because the carer is a star. Marie Curie supported us at night in the early days which was arranged through the Hospice care representative in our area. Mary has now settled at night and is "stable" in MC parlance. Hospice care have also arranged for her to go to their day center for one day a week. These charities are fantastic and make up for what seems to be missing on the official home support front. Do NOT be too proud or afraid to ask because you need your down time. Finally your District nursing team are crucial, we are blessed with a particularly determined Community Matron who acts as a coordinator for Mary's needs be they funding applications, OT (for equipment) or physio visits. Your mum is entitled to Attendance Allowance and our Hospice care lady fast tracked this for us because Mary has limited life expectancy. Take care of yourself. Rob

Hi Bobbiejo,

I live in Essex so if its near you I'm happy to meet for coffee if it helps. I didnt find this site until 5 years after my brother was diagnosed. It has been invaluable to me. Everyone here understands and will be able to answer any questions you have, so you are not alone, we are here for you.

I agree with all the replies. Contact your local Council and ask Social Services for help. You will have to explain what PSP is as not many have even heard of it. I found it easier to say it was a neurological condition similar to Motor Neurones (people have heard of that).

Definately get Power of Attorney for both financial and medical. Go online to the Gov.uk site. Follow intructions to the letter and you will be ok. I can help if you get stuck.

Now take a deep breath and look after yourself, it's a tough road but take it one step at a time. We are all here to help.

Big hugs

Sue x

Bobbiejo21 profile image
Bobbiejo21 in reply to

Hello I just wanted to say thank you for you advice and kind words. I live in west London near ealing not sure how far away that is from Essex x

Sarah1972 profile image
Sarah1972

So sorry for your sad news about your mum. From my experience, I am the main carer for my mum who has PSP and I have 2 children one is 15 the other 24 and still at home. You can not do this alone, I live with mum dad husband 2 girls and daughters boyfriend. I had no time for any of them and everything always seems to fall at my feet. It got to the point I didn’t know what I was going to do. I eventually applied for CHC funding after been sick from work for 5 months. Luckily I was accepted and now have a carer through the night 5 times a week and an hour in the mornings for washing and dressing. Mum is so demanding and her empathy has almost gone so no longer takes my feelings or anyone else’s into consideration which means she thinks she takes priority over everything. As much as I try to remind myself it’s PSP not mum it doesn’t make it any easier.

Been the carer is extremely difficult so please please get some help, you can’t do this alone when you have your own family who as hard as it seems, you must priorities before you realise how much you have missed out on. My daughters behaviour really deteriorated and before I realised how much she had gone through it was to late. She is now self harming and has been permanent excluded from school. I can not stress enough how important it is to get help.

This page has been my best support by far, everyone here understands the difficulties you go through.

I’m sorry that this is such a negative post because there are lots of positive days with mum, however this is at a cost I never wanted to pay. My children are my life but caring for mum has taken over. Are you in a position to get carers ? Xx

sasmock profile image
sasmock in reply to Sarah1972

Your post has just brought tears!! I can so relate to that feeling of missing out on your children's childhood. I'm so sorry your daughter is struggling. My daughter has issues too, with anger, fear and grief. She's home educated now. Caring and being a parent is such a challenge x

Sarah1972 profile image
Sarah1972 in reply to sasmock

Sadly I expect it to be the same for many. I always thought I would hope my children would look after me but since seeing the damage that will never happen. Dad is 83 and did the majority of the care whilst I went to work and I would take over once Home, however this made him ill and ended up spending two weeks in hospital and has never fully recovered.

I hope your daughter can somehow overcome this, my heart goes out to you xxx

raincitygirl profile image
raincitygirl in reply to Sarah1972

I'm so sorry to hear about your daughter Sarah....Will she be able to recover?

No matter how important your mum is/was in your life, the next generation coming up who haven't had a full life yet, deserve first priority. (Yes...this is a value statement - my values - not a 'fact'..) I know it's easier said than done.

Special big Hug and strength to you for your exhausting choices :-/ XXX

Anne G.

Sarah1972 profile image
Sarah1972 in reply to raincitygirl

Thank you Anne. Your words are so kind and helpful I just hope that Bobbiejo24 can learn from my experience before it’s to late. Mother are so precious but our children more so.

I hope in time my daughter will recover but do believe it will take some time. She is a good girl and loves her family dearly, just takes it all upon her little shoulders and then vents the anger at school. If only they could see her with her grandma. They only saw the angry child. She has a councillor now and medication so hopefully she will get there.

Thank you for your concern

Sarah xx

raincitygirl profile image
raincitygirl in reply to Sarah1972

You are so welcome( and sympathized-with!) I hope the counsellor finds a way to make a positive connection between her "negative" emotions and what she can deeply learn about family and love and commitment from your experience with your mum.

Let us know how it goes, ok?

...One more Big Hug to you ;-)

Anne

Sarah1972 profile image
Sarah1972 in reply to raincitygirl

Thank you Anne. I will keep you updated... though may need a reminder... to think I thought baby brain was bad... this brain is even worse. Memory of a sive comes to mind.

Big hug right back to you xxx

sasmock profile image
sasmock

Hi, I'm sorry to hear you're struggling. I agree with what has already been said - get help now. It often takes time to get the right help put in to place. I have experienced trying to care for my dad whilst bringing up two children and it was the hardest thing I've ever done. It's all consuming and utterly, totally mentally and physically exhausting. He didn't want to know about his condition either (or couldn't understand). It's hard now, to look back and see just how much my children went without me being fully present and functioning as a mum. They're 13 and 11 now, and we lost my dad last year - his symptoms began ten years ago. There is help available, but it's knowing where and how to ask that's the key. Getting a good social worker/occupational therapist is essential and keep them involved at every stage, and getting a key GP who can help co-ordinate things - in our case it was a bit of a battle, but eventually, when a senior partner GP stepped in , things did get sorted. You just have to learn to shout loudly and not be fobbed off. Getting help from your brothers is also completely essential - my sister could only visit once a week, and that was hard enough. Your children deserve family time too x

NHGrace profile image
NHGrace

Dear Bobbiejo21. You’ve come to the right place. You don’t need to post often - or at all - but come every day and you’ll learn most of what you need to know and feel connected to others while doing it. Yes, sometimes you’ll get a scary glimpse into a possible future, but since everyone variez so much, your mom will not have all the troubles you hear here. I, too, have small kids - 6&9, a great partner and uninvolved siblings. My husband has slept on the couch since my mom moved in with us over a year ago and both my kids suffer from my stress and the general chaos. But, alas, it also teaches them about how to step up when people need you - something boys aren’t socialized to do! I’ve been lucky to be on a paid leave from work, so it’s given me time to seek out the community resources available. I live in Massachusetts and had to bring my mom down here because her own home with my father wasn’t safe (he’s 82) and there are far better social services here. She was just referred to hospice last week - in large part so we can avail ourselves of the extra 10 hours of help that comes with it - and the on call medical personnel. She’s had a DNR since 60 (which tells you something about her outlook), so her goal is to stay out of hospital and no prolong her life in any way. She hasn’t shown much interest in hearing details of PSP, but her outlook on end of life remains the same. She was diagnosed at 76 and declined rapidly. I’d be lying if I said the news of hospice didn’t come as a relief to me - even with all the help, I’m completely consumed and took comfort in the reminder that it won’t last forever - or even much longer. I wish we could’ve had her a lot longer, but the reality is her quality of life is minimal at best. While my biggest angst comes from situations where I must choose between my mom and my kids, I know she’d want me to put them first as and when I can since that’s what she did. I make sure she’s safe, but sometimes I take calculated, quick risks - to see a kid in a play, pick them up from school, or to go to the gym while she’s sleeping. And sometimes I risk things on their end: letting them be alone with her for short periods or getting their own way home from school even though I’m not quite ready for that (and worry if something happened I might not forgive myself)...these are the honest decisions that must be made. But, isn’t this just life? I also (try to) remind myself of all that we’re lucky for - if she’d been 55 like Margarita’s son, she wouldn’t have seen any of her kids settled down or met any of her grandkids; if I didn’t have an academic job, I wouldn’t be able to be with her right now; if I didn’t have an amazing partner, I’d be lost; I’m in better physical shape than I have been since before kids because it’s my only “me” time and I can go when the kids are at school...the point is, life is fragile and finite. This won’t last forever, so trying to enjoy whatever you can (with your mom and for yourself) is essential. It’s a daunting, emotionally and physically demanding job that few of us sought out, but it’s life and love. We are imperfect humans just trying our best to do right by our loved ones - whether in their home, ours, or a facility. Find joy wherevwr you can and find comfort when you cannot. You can do this, BobbieJo21. It won’t be easy but you will make it. Xx

raincitygirl profile image
raincitygirl

Welcome Bobbiejo :-)

You've got great advice from experienced members here. I second their comments about seeking social/health services assessment (I'm not in the UK so don't have the right terms) and as much carer help as will be provided to you. I also recommend that you press your brothers for assistance. Use whatever techniques are necessary! It is a sad fact in this "liberated" modern world that too many males still zone out at the thought of caring work, and that just isn't on. They need to have a share in the responsibility and not expect you will do it all because you are the woman!

Even if they will take turns giving you a minimum of one evening a week to get out of the house, meet a friend or just have coffee or go to a movie (or take your kids to an evening movie or a late supper out - shocking!!)

I know that none of us know the exact circumstances for anyone else - but we do give our opinions with love and respect. Take what works and ignore the rest :-)

Keep in touch and let us know how you're doing. XX

Anne G.

aliciamq profile image
aliciamq

Not everything you googled will happen for your mom and much of that stuff may be a long way off. Enjoy your baby and your mom and get your sleep and your exercise - as if you wouldn't be with a 2 yr. old😄 You'll be OK!! Won't be easy sometimes, but, you'll be able to do whatever you need to do and don't get into a contest - nothing is perfect!!!

Spiralsparkle profile image
Spiralsparkle

Hi

Everyone has shared their wise words.

I don't have anything else to add really. I also care for my Mum full time who has CBd. Also she hasn't really ever wanted to know the ins and outs of it. She does know there is no cure etc and no specific treatment .

I cannot imagine also having children to look after, even at the early stages. That must be so tough.

I hope you are able to get some support in place so you can get a break or have some of the caring role done by others.

LostinHeadSpace profile image
LostinHeadSpace

Hi Bobbiejo,

I don't have any answers for you, but just wanted to let you know our family is in the same boat. My husband is currently being diagnosed with what may be CBD, and we have two grade-school kids at home. He doesn't need care yet, but it's a scary situation. I think figuring out what this is going to do to the kids is one of the worst things. So I don't have help, but there are others in your shoes.

Lost

Codd_family profile image
Codd_family

My mum has this too, I know how you feel 😘😘 big hugs to you xx

Bobbiejo21 profile image
Bobbiejo21

Hi everyone it's been a really long time since I've been on here I have just read all your comments and wanted to say thank you to you all for replying. It makes me feel less alone knowing there are other people who understand how I feel. I attended the pspa family and friends day a few weeks ago and got some more information on my mum's condition

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