We are new to this

My husband has CBGD. He is 78.

For the past month he does not know I am his wife.

We are struggling.

He is still walking but has a lot of difficulty using his hands and fingers.

He is incontinent.

He goes for P/T twice a week and starts O/T on Monday.

We live in the United States.

He is being treated at Cornell in NYC

He finds it better to sleep in an upright position.

We have two sons who are very helpful and caring.

20 Replies

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  • I'm very sorry you have had to join us and welcome you. I hope you find the site as helpful, as I do. My husband has PSP and we are in the UK but there are folk here from the USA and many other countries, knowing what you are all going through, your husband, you as his main carer and the rest of your family.

    Sending you a big welcome virtual hug.

    Nanna B

    X

  • Thank you Nanna. Kind words feel so good especially when the world is asleep and my mind will not quiet down.

    Bless you.

  • Welcome.

    My husband has PSP. We live in London.

    You will find support here. We cannot change things but we can listen and understand.

    Love, Jean x

  • Welcome to the site. I am sure you will find lots of support here. My husband has PSP and we live in Kent. Do keep posting.

    Vicki

  • Hello and welcome

    My husband has c.B.D, and is also 78.

    The time is 3.10am. I have just put him back to bed, for the 4th time since 8pm, so I am now wide awake and sitting with my best friend.... My I pad on Healthunlocked don't know what I would do without this site. I love them all they all keep me sane.

    Keep posting

    Love Ellie x

  • Hi Ellie.

    I am also up here in NYC and it is 1:40am. He just dropped his water and had to be changed.

    He is still mobile, although needs help getting up from a chair.

    My pain is that he does not know me and has no memory of our 54 year marriage,

    I feel invisible.

    Thanks for responding.

  • Hi

    My husband also has CBD.He is a 59.Has had since 2010.

    How long has your husband had CBD?

    I am sure that you will find lots of help and support on this site.

    I have found another site just for CBD carers and sufferers to talk,gain knowledge and support too,which has mostly US people on it which you may also like to visit. It is on the Yahoo groups.

    D. X

  • Thanks please tell me the site on yahoo. I need all the help I can get.

    Grateful and scared.

  • Hi Noteasyrc

    Don't be too scared,there is a lot of help and support out there.

    iF you would like to ask me anything I am always here, as are a few others on this site Who care for loved ones with this horrid disease.

    I find it useful to follow anyone I find on here who is a CBD career and that way I get to see anything that crops up with them and maybe something that I can help with or share.

    If you type in cbgd_support you will find the yahoo group come up and then if you want to,you can apply to become a member and then send and receive emails from other members.

    Hope this is a little helpful for you

    You Take care

    Dx

  • Thanks!

    We are blessed to have the Internet!

    I am trying to get used to it!

    Feeling scared about the future but your response helped.

  • I am so sorry to have to welcome you here. As you may know, alot of us here at this site are caregivers for those with PSP. However we are all tangled up in the same mess, the "malworkings" of somebodies TAU protein ! I am confident you and your mate are getting optimum treatment from Cornell. Three other places that might/will be helpful is HealthUnlocked, CurePSP.com and God. I don't even know all the wonderful thing HU has and CurePSP.com actually has information kits for those with such tauopathy's as ours...I have actually used the kits to enlighten Dr's and other healthcare pro's. My husband's Pt , OT and Speech people had never heard of PSP So ask CurePSP.com for the kit it is very helpful!....I am sure they have a CBG info kit.....look into it.

    And finally, If you are a praying family, Continue. If you are not,, start. Nothing bad comes from praying a righteous prayer. Don't hesitate to ask God for help. The best help is faith and strength, in all that seems to fail, a strong faith can shore you up.

    Again Welcome....I hope you find a place of solace either here or a site focused specifically on CBG

    AVB

    "Commit thy works to the Lord, and thy thoughts shall be established.

    Proverbs 16:3

    For God has not given us a spirit of fear;but of power and of love, and of a sound mind.

    II Timothy 1:7

  • What to say? Thank you is never enough. Just to hear a voice in the night who gets it makes me cry.

    I feel I don't pray enough and I am guilty of losing it when Joe talks to me as if he does not know me. He feel I am a worker and yet we have never had a stranger in our home to do anything. We have two homes and I maintain them both and enjoy doing it. I hate strangers around but I know it is inevitable.

    Timothy1:7 was right on the mark.

    Bless you and thanks again.

  • Yes why is it that praying gets tucked in somewhere between a big family dinner when your Bible beating grandma is over and the presence of disaster...and is often not used until then....Don't want to preach lest I offend or get kicked off this site, but don't be afraid to pray and be confident that which you need through fervency shall receive.

    And I also would lose it on Bruce...."you're just doing this to me , right? what did I do? why are you mad at me ...you are so passive agressive."..on and on...not everyday but it took me a solid year to realize and work on the fact that having PSP is not his choice!!! It's not my choice, but it's a part of our life. We are going to have to embrace it and work withit and create a new normal....I still have to bite my tongue....that what I think is in jest may really be a knife in my husband's wound....He is still cognizant of life and feelings (uhm i'm not sure about the feelings) .I know that depression can be a part of PSP, and I sure don't need to add to my husband's emotional pain.

    So I say all of this to tell you; that you are not alone in the way you feel. This is a place to vent those frustrations. We have all experienced them. We all have ways to get over them....

    Write On, we are hear for you.

    AVB

  • Thanks. I have to regain my faith and regroup. There are harder days ahead and only prayer will get me through.

  • Amen :)

  • Hi, and welcome. I am in the U.S. as well just on the opposite coast. My husband has PSP but has woke in the night several times in the last month and asked me who I was though In the morning he seems to remember. That is an excellent facility but like everywhere else the medical professionals are as baffled as we are. Stay on this site. The information you receive from those in the trenches is more helpful than what your doctors will give you. We are the ones that are faced with the day to day deterioration of our loved one's brain's neurons. They see symptoms of a disease progressing every couple of weeks or months, while we watch in horror as our loved ones struggle to hold on to who there were before...every minute of every hour of every day. We hold on, hoping, and try to find ways to bring them back as they slip away right in front of our eyes.

    We see the person we love not the unrelenting disease that inhabits their bodies as we try and try to remind them of it as well. I imagine the day will come entirely too soon, (though there are days we feel not soon enough when our spirits are depleted and our hopes diminished) when they will become weary of trying to remember and we of trying to remind them. And when that time comes we will hold them close and whisper one more time who they are and that we love them and will never forget who they really were. Then we will let them go.

  • A beautiful reply and I am grateful for your insight. Your words ring true. I am afraid I will get ill and not have the strength to care for him.

  • I am sorry. I guess I was no help what-so-ever:(

  • I worry that I will not be physically and emotionally able to as well. I do not want to have to go into some facility where they have no emotional investment in him. my mother was in a nursing home and even good ones never seem to be good enough.

    We brought her home eventually and it was the right thing to do. She passed peacefully in my arms and I wish the same thing for him as well. I am terrified the decision will be made for me by a random occurrence such as a accident or illness or an untimely hospitalization-who knows what. But I try to focus on what I do want instead of worrying about what I do not want to happen and not put energy into it occurring. Maybe silly reasoning but it helps me and maybe you as well. My doctor said that we have better healthcare in the US (do not know if that is true or not as I have not any first hand experience there) but that they have more resources. Here if we do not pay for them we have to go it alone mostly. But hang in there-xo

  • Thanks for your kind thoughts. A new day. God Bless.

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