PSP Association

Don't know what to do

My husband was diagnosed with Cortical basal degeneration this past August after suffering with left sided issues for 2 years. He was at first diagnosed with a stroke, but he continued to worsen in condition. Now after 2 years he walks with a walker, falls a lot, and suffers from severe depression. He moves slower and slower and his speech is startun9 to slur. We have two daughters still at home who are also struggling with watching their father deteriorate in front of them. Every day is a struggle for our family. We need emotional support and advice.

Kathy.

Thanks

10 Replies
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Welcome Kathy! You have come to the right place! We understand how you feel and can offer advice from personal experience. We care and we will listen.

My husband had CBD but was diagnosed only a couple of months before his death. He had something wrong with him for around 5 years before that.

We will tell you of our experience and how we managed, and the times when we didn't. We do this to help you anticipate. Our experience may not be the same as yours. Progression varies with every individual and is unique to each one.

It is a rough ride through, and many of us find that help through diagnosis or practical treatment is often slow since all these related diseases are rare and often confused with Parkinson's or like your husband, a stroke.

Understand that even tho your husband can't speak or move well, he is still there, hidden beneath a failing mind and body. Explain this to the kids! Make sure they hug him and talk to him and treat him as a normal person. He may not be able to respond easily but he will understand.

There are a few people on this site who are writing still as they try to come to terms with how either PSP or CBD affects them. Most of us who write are carers, or have been.

Try to prepare for the time when he will need more care, a POA (power of attorney) end of life care, those sorts of things. They are not easy to discuss with your loved one and you may find him withdrawing from the discussion as he feels it unnecessary. Or you may find as I did that the disease overtakes the ability to provide for needs. Try and be prepared and anticipate. This is difficult and frustrating but may help you keep on top of managing him at home for as long as possible.

If you search for CBD you will find quite a number of posts over the last couple of years. If you long press on the blue names, you will get to their page and be able to see some of their journey.

Keep in touch. Come back for help, and feel free to scream and shout if you need to. We have all been there and understand the pressure, strain and exhaustion this disease brings with it.

Hugs

Jen xxx

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I am in a similar situation, although it is believed my husband as PSP. His disease is advancing quickly. Our 19 year old son was amazing at helping , but now is so Sad it’s hard for him to be with his dad for too long. Now our older son is stepping up. A while ago, he was in more denial.

I think once the girls understand , they will each travel their own journey, just like each of us.

Jen suggestion to help them understand their dad is still there, is the best advice, yet the hardest to always feel .

Karyn

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Jen, what a great reply, so understanding and also comprehensive that it will help many of us caring for those with this horrid disease. Thank you.

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Thanks for your encouragement. I've spoken with an attorney this week and he's told all the things i need to do. It is overwhelming. There is so much to do.

I'm afraid of whats going to happen. I don't know if I'm going to be able to take care of everything on my own.

Its good to know someone understands what we're going through.

Thank

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Meykat4, I am sooooooooooooo sorry.

I am 77 years old, single. I lost my son who was 55years old May 4, 2017, to PSP. His symptoms started March, 2014. In 2016 his neuro put him on Lexapro (an anti-depressant).

We live(d) in Los Angeles, Calif, USA. My son,single too, had his own residence, but we lived about 15 minutes away from each other.

How old are your daughters? I suggest that (if you haven't already started) open up a dialogue with your daughters encouraging them to express their fears, their sadness, all their feelings. I'm sure your husband has feelings that need expressing.

I (we) have Kaiser health insurance which covers family/psychological therapy. Most of the contributors to this website live in the UK. If you also live in the UK much help/guidance will come your way on this site.

I keep you in my prayers.

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Thank you for your reply. My girls are teenagers. My older girl seems to be adjusting better than my younger one. She tends to shy away from her father. I try to get her to talk, but she clams up.

I'm afraid she'll miss out on spending time with her dad. I don't know how long he has. His doctor says his disease is progressing fast.

Taking this one day at a time.

Best wishes to you.

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All you can do as a mom is what you are doing. To insist and or force might do possible harm.

If you have a video camera to record your husband leaving words of love and goodby's to his daughter might be helpful. If no video, perhaps you can take an ordinary photo with your husband holding an I LOVE YOU MESSAGE (8x11paper) with the names of your daughters, and the date on it. It 's those little things that become priceless later.

Later you will be the voice of your husband, telling your girls how much he loved them and helping your daughter thro any regrets.

It will all turn out ok with whatever you can get done legally. Life has a way of doing that.

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i am in exactly the same situation as you ive 47 my husband has CBD we hv a young daughter 13. she is amazing with her dad.

i also come on here tp try and find out more about CBD and try to work out whats next for us.

It is very hard but hes stil the same person a loving husband and dad x

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Hello

My Mum has CBD and she lives with me since her health got worse. We do have carers come in to do personal care calls as I couldnt manage them alone.

Get on board now as many health professionals as possible as they will be needed and the system is not responsive enough in my opinion when things change and deteriorate. It is hard work been advocate but we are there voice.

The PSPA association has great publications that you can download or get sent out to you if you ring the helpline, this will help you to know who should be involved and where you can ask to get help from.

The site is such a wealth of knowledge from people who have experienced or are experiencing the journey with these conditions and can assist you with practical and emotional support.

X

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Hi Kathy,

My husband, who is now 61,also has CBD. diagnosed 2013 but first signs in 2009/2010, so as you can work out, we are quite far along the path that we have to follow.

There is some very good advice been given here so I'll try not to replicate what everyone else has said.

Jen's advice would have been exactly as I would have advised.

We have all been at the point where you are now,wondering what to do next and where to turn and how this CBD is going to effect our lives, physically and emotionally as it progresses through the years.

POA is very important and finding out about any benefits such as ESA and DLA. Find out about your husband being disregarded for council tax, when it comes to it, if you haven't already done these things.

There is nothing to cure this disease but we have found that there are some very useful drugs to help with the symptoms, especially the depression. My husband also got referred to a Neuropsychiatrist, we still see him now and a Neuropsychiatry nurse visits regularly. She is the person that we have most contact with and I talk to her about anything and everything.

She is the person that makes me feel that we are not alone, trying to get through this and I can call her at any time if I am worried about anything at all especially when the new stages of the CBD come along and take you be surprise!

Our GP put us in contact with OT's, who can supply equipement, and continent supplies, when needed and also put us in contact with the Neuropsychiatrist and our local Hospice. My husband goes to the local Hospice once a week which is my saving grace, my only day to myself!

Nothing gets easier but everything that happens from now on becomes routine and I have always tried to be positive and have realised that it becomes the little things that can still bring joy, maybe it was always the little things that did just that but we took it all for granted until these past 7 or 8 years.

Keep in touch and I send lots of love.

Do not hesitate to ask anything at all. EVeryone is so lovely on this site and there will always be an answer to any question.

Denise x

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