My mom was sadly diagnosed with PSP and frontotemporal dementia 4 years ago, I just need some support and would like to hear from others in a similar situation or even meet up with people. I feel very alone in terms of others understanding this horrific disease.
I am a 30 year old woman and already feel like I've lost my mom. I am getting married in May and I am terrified she won't be there or even if she is there not be there in her mind. We have carers in twice a week, I care for my mom twice a week and then my dad does the rest. He has been reluctant to accept help as he is a proud man but he is also in his 60's and I worry its taking its toll on him.
Mom has to be washed, dressed, fed, taken to the toilet. She can barely walk now and is in a wheelchair if we go outside. Her speech has really deteriorated every word is slurred or mixed up so it is difficult to understand her sometimes.
I just yearn for the woman she was and I know she isn't coming back, i just hate watching her deteriorate knowing I can't stop or change the outcome.
I feel very distressed and just want to know there is someone out there in my situation that understands.
Thank you
Lydia
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Lydia_May
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There are many here who in one way or another are, or have been, going through these sorts of horrible times.
I'm assuming you are in the UK? This post is based on that.
Yes, the increments loss of the person you love and relied upon is hard. Each time they deteriorate it's another small loss added to the ones that went before.
Seeing their plight is heart breaking.
As to your wedding: Congratulations! The Frontal temporal dementia is the issue as to whether she will be 'there' at your wedding. With PSP alone folk are often cognitively pretty much intact almost all of the way through the illness. That is though their thinking is slowed and their ability to communicate is lessened, they know where they are, who is around them and what is happening. You most likely will find that your Mum will be mentally there and able to celebrate your wedding even if she has difficulty expressing that. I do hope so.
As for care. Speaking as someone who has travelled the road for a while, it is often hard to accept carers at first. What was a private marriage becomes a shared and more public thing with carers coming in etc. Caring does take quite a toll on the carer, but it is better to get a little extra support in sooner than later. I would strongly suggest that your father asks for a social services needs assessment and a carers assessment at this stage. The carers assessment is about seeing what can be done to support the carer. It is not about whether they are capable or not.
A Needs Assessment is a good opportunity to see what resources are there to support the care. It can be used to get an Occupational Therapist involved. They can loan equipment and such as well as giving guidance on many things. Also a physiotherapist. They can do quite a bit about maintaining your mothers ability to keep her physical function going longer. Additionally a SALT or Speech Therapy assessment. They can do a lot in terms of difficulty with swallowing which often becomes a big thing later on. The GP can make these referrals too.
The Soc. Serv. assessment give your Dad options. They will not force a service onto your Mum. Think of it as an informed discussion with options.
There is more: Social Services Care, should your Dad accept it, is means tested. Only your mother's income counts, not that of your father, nor the value of the house. Continuing Health Care is the NHS funding for care. That is free at the point of delivery, but it is harder to get. Again the GP can refer to Continuing Health Care. If you go that route do search this site for advice as to how to get it. People who are successful in getting CHC funding generally are those who get informed about how it works and then put up a bit of a fight. Yes, shocking, but true. This is why I am suggesting Soc. Serv. Needs assessment first. It will help your father see what support is available and to discuss his reluctance. You can always switch over to CHC funding application after that.
My heart goes out to you all. You are on a very difficult, but do-able road. At first it seems utterly daunting. It gets somewhat easier and it is do-able.
Thank you for your reply, yes I am based in the UK.
I just feel like I am grieving her even though she is still here, it's so horrible to watch. I feel helpless and I desperately try and put on a brave face in front of her all the time when inside it is breaking my heart.
Thank you very much, I really hope the wedding will keep her mind and body going.
We have had all the assessments from social services. And we have a salt team and physio and they have helped now and then.
I just wanted to almost find a friend that understood/has been through this so that they understand exactly what I am saying rather than having to explain the condition.
Every change or deterioration just seems to send my head spinning and just when I think I am ok dealing with it all I feel like I collapse.
Hi Lydia, and welcome! You have made a good decision to sign on here. You will find all here are thoughtful, understanding and helpful, and know what you are faced with, and know the thoughts going round in your head.
It helps to know where abouts you are as there will be someone closer than I am!
I live in New Zealand! My husband suffered from CBD and died 3 years ago. This website was my lifeline and was where I found understanding and sense when my world and my husband's had been sent in a spin not knowing what that diagnosis meant, or anyone else who could explain it.
You are young to have this disease disrupting your life, and close to another big event in your life!
Don't assume that your mum is "not there" mentally! She may well be able to fully understand what is happening to her, and what you or your dad say to her - just that she may not be able to form proper words, or enunciate properly. This is not unusual. Others who have more experience with PSP and FTD will no doubt explain more.
Give her smiles and hugs! And try and find a non-verbal way of communicating; simple sign language, thumbs up/down, hand squeezes, etc. Ask simple questions so you can get a yes/no answer, or a sideways move of the hand to mean 'something else' - and be patient, as it will take time to establish that understanding.
Make her laugh, tell her about your day, get her involved in your wedding plans. Go shopping with her to find her something pretty to wear. I know it won't be easy, but help her to feel 'normal'.
Treat her as if she is still your mum, because she will be inside, she just can't show you as easily as before. You have not lost her yet and you can give her a lot of joy, showing her that you know she is still there.
I am sorry to hear about the passing of your husband.
I feel like this disease shadows my life, there isn't a day I don't think about it or mom or the past or future even. I feel like it's a constant black cloud over me and I hate seeing my mom who is only 63 similar to a baby needing everything done for her.
I always do my best to keep going as normal and include her in everything I just miss my mom so much. I feel like I am constantly grieving.
The other day we had a whole day together going wedding dress shopping and then afterwards we had a few drinks at my house and it was so lovely to see her laughing and smiling. Something I haven't seen in a long time, she was really belly laughing and it was wonderful.
Welcome. You have come to the correct site as there are folk all over the world willing to help you.
If you click on “Home” under the PSPA sign in the top left hand corner of this page, it will take you to your page. On the right there is a box, People near me. You can register your name and find the distance where everyone else who has registered lives. I hope you find someone you can meet up with. If you contact the PSPA, they will let you know of any local groups you may be near to. As you have mentioned your Mom and in the U.K. we usually say, Mum, I’m thinking you may not live here but may be mistaken. Wherever you are, I hope you are able to meet up with someone in the same or similar situation.
I hope I find someone too, it would just be nice for someone to understand the condition instead of permanently having to explain and feel like an alien. I am in the UK but in the midlands we say mom instead of mum
Welcome to the site. You have been given very good advice from our members here already. I'll just add that if things are getting you down or it's been a hard day, you can come here to rant at the world. We've all been there and we will completely understand.
Hi Lydia, sounds like your mum is at the same stage as my husband so I can understand exactly how you are feeling. It is very difficult watching someone you love so dearly being slowly taken from you by this terrible disease. This forum has been a tremendous support for me so I hope you stay with us. You will get lots of support/ advice/information from those who have been through it all and those who are still on the journey. You can vent your feelings here and no one will judge you as we have all been there. I also hope there is a local support group near you but if not, we are here for you. Sending lots of love to you, your mum and dad, Nanny857 xx
Welcome to the site Lydia although I'm sure you would rather not have had to join, this wretched disease affects every part of your life. I'm sure the responses have given you great advise and a feeling of being supported, is there any chance that you can share with your dad who must be goi g through turmoil. I think it is often more difficult for men to share their feelings publicity and ask for help. I found the hospice at home helped us in the beginning as my husband, Ben was in denial of his diagnosis and they helped him come to terms with the reality. Eventually he agreed to go to the Hospice daycare centre each week, which he enjoyed and I used their counselling service for many months. You need to get GP referral so your mum would have to agree for them to contact you but they take the gently gently approach to half ypu accept your situation and can get the ball rolling for other services to get involved. Your dad will eventually accept and need help from outside agencies. I hope you can get things in motion so that whatever the outcome you can enjoy your big day knowing your mum is being properly looked after.
Hi Lydia so glad you found this site, but sorry you had to. This place keeps me sane, there is no question too daft to ask, no one judges when you have a rant, just good advice and never ending understanding.
Make sure your Dad has POA for Finance & Health set up for your Mum (and himself). If he isn't working is he claiming carers allowance? Is he claiming Council Tax rebate for your Mum's mental impairment?
My Mum is a little further down the road I think than your Mum, but as others have said she is still definitely in there, just a little hidden from view. She still takes pride in her appearance and I make sure she has nice clothes (we chose the next days outfit, everyday before I leave), she has her hair done every week, her nails (first time in her life she has had nice nails as she was a gardener), facial hair is managed and we apply makeup before she goes out- all help her to retain her sense of self and though wheel chair bound and struggling with fatigue, we still try to do things (if in a smaller way) that we used to, so visiting a garden or shopping.
It must be very hard planning a wedding and not having your Mum play the role you expected but with your support and a little thought she can still help you plan your big day and enjoy it with you, you might just have to be a little creative at times.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I´ll send you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan.The information I am sending you through this private mail is a compilation of our own experiences after 7,5 years traveling with PSP and of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.
Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
Hi Lydia. I've nothing to add to the excellent advice given apart from emphasizing the importance of making the most of every day.
I understand how one feels isolated and alien when caring for someone with a rare disease. It's tough. That's why this site is a life saver. I have also made friends living near through this site and PSP association. I hope you do.
My name is Debs. My mom was diagnosed 1 and a half years ago...but was not right for 6 months before that. So at least 2 years into PSP.
I know exactly how you feel. I look at my mom and shes "not quite there" anymore...its killing me slowly watching her deteriorating. And I feel so guilty about how I feel with coping often forgetting how she must be coping.
There are good days however amidst the bad. And I suppose it's those good days that you have to hold on to.
I just wish I could laugh and talk to her like i use to and that she could be there to listen and advice me on all my news but she isnt able to...not like before!
Life has thrown us a massive curve ball and we just have to get through this in order to look after all loved ones around us...I am married with 3 children. And I worry about my dad...he is strong on the outside but wont show how he truly feels inside.
I wish oh how I wish this dreaded disease never existed!
Just hold on to the time you have left with her. And even thought they say mentally they are there...I'm not sure it is the same with my mom. I dont think she is anymore!
Your Mum, from what you describe, is at a similar stage my wife was. I am in Scotland & sole carer with family some 4 hours away. Life is tough, so I understand what your Dad is going through. We got great benefit from Cannabidiol (CBD) from our local health food shop (5% drops) - reduced coughing, improved swallowing, speaking, balance and awareness/control, the latter enabling us to dispense with day & night pads. However it has not arrested the progression just made life a lot better than it would have been without it. I think, from your description your Mum would benefit from same though I am told not everyone responds to the same degree.
The downside of giving CBD in the UK is that, as it is not prescribed, my wife would not get it if put into a care home and so go down hill faster - so I could face greater difficulties on rerurn. Consequently I have decided against respite for the foreseeable future.
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