New to online support group

New to online support group

I am new to this on-line support community. My Sister has CBD with strong PSP traits. I am caring for her in my home along with my 28 year old son who has cerebral palsy. My husband is a saint and an angel to say the least. My son helps with his aunt by playing her favorite music when she feels sad... this really helps! Over the last four years my sister has been mildly effected, but I feel we are entering a new phase. Until recently she has been so cooperative and happy. But now she is sleeping a lot and when I come to get her out of bed - even if it is at the crack of noon - she is mad at me. She is starting to eat less and getting her to drink is getting difficult. She takes seizure medication and sometimes spits it out. She speaks in short phrases and she understands everything I say to her at this point. She does not need a wheelchair and can follow instructions - although I have to 'direct' her several times before she actually responds.

I know we have several more phases in this disease process... and It has been relatively easy up to this point. I do my very best to take care of her... but it is hard when she gets mad at me. I don't really have a question for the group - I guess I don't have enough experience with CBD/PSP to even ask a question yet.

I wanted to join because reading some of your posts has given me some insight as to where my sister is going. Any advice would be appreciated.

6 Replies

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  • Hi Costner, I joined this site just over a year ago, my husband has PSP, I have found a wealth of support, and advice from those with more experience of this disease than me and feel like I have made some lovely new friends, hopefully you'll be saying the same in a years time. We share sad times, frustratrations and occasionally happy times!

    2 people to care for, you have a lot on your plate you'll need all the support you can find

    Love

    Debbie xxx

  • Debbie, I can tell how inviting the people in this support community are. Thank you. I know it seems a lot - but my son is actually very helpful with my sister. He engages and entertains her with music. Fortunately - he is cognitively normal and understands how to help to the extent he can.

    My husband is also very involved. I hope your husband is managing and that you have children or other support from family or friends. This is certainly not a job for one person - it really does 'take a village' to get through this.

    Thank you so much for introducing yourself.

  • Dear Costner, I'm glad you found us; this community is a life and sanity saver. You have more challenges than most, and t does sound as if you are entering a new and more difficult phase. Sad to say, things rarely get better for long. Are you in the UK? The system of support there is sometimes great, and there is a lot of good information in past posts about accessing that. If you haven't used the search function yet, I'd recommend rummaging about.

    Ask anything, vent as needed. As members of this community come from around the world, someone is almost always here.

    Love and peace, Easterncedar

  • The forum really is a lifeline you will find that everyone on this site is there to support, advise and generally just be there at your time of need, even if it just as a sounding board. I have found everyone to be wonderful, I'm sure your will have the same experience. I read the forum on a daily basis and find that something may not be relevant now but it will be in the future. All the best with you sister.

  • Your sister is beautiful, I am assuming that she is still quite mobile and able to take care of herself?

    CBD takes a huge emotional toll of those effected by it and their carers.

    The first things with my mother in law were the talking and falling closely followed by the anxiety, her doctor at the time knew nothing about the disease and prescribed her with an antidepressant and a bunch of specialist appointments. You are ahead of the game because you know and knowledge is golden.

    Keep your sister occupied, keep her moving and get ready for what will come next. Don't be afraid to ask questions, you will get the real answers here, I have only been on for a month and I feel like I've known everyone for years.

    Keep strong

  • Thank you... yes she is beautiful! My sister is mobil and follows directions, but she requires complete help for baths, teeth and dressing. It could be worse... AND it WILL get worse but hopefully we have a year or two... one never knows. My Son has a very active life so she tags along and it keeps her active also - I agree this helps her to avoid depression... though she does have her moments. I am very happy I found this site. Seems many are from the UK... we are in Michigan- USA

    Looking forward to getting acquainted with others in my situation.

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