LGBTQ

[Atomic55]

Any other LGBTQ couples living with/caring for someone with PSP?

[Hidden]

Caring for a loved one with PSP is difficult to say the least as each case has many changes. My mom had PSP and many on this site are caring for parents (some in their homes others in nursing homes) others are couples. Everyone here will do their best to answer your questions open & honestly... l hope you find this site as helpful as l do. Sending hugs... Granni B

[Atomic55 in reply to Hidden]

Thank you for your heartfelt reply. I mentioned LGBTQ people with or caring for somebody with PSP because experience shows that some people find it difficult to be open about there or to approach official sources for support and it’s important for LGBT Q people to feel included and safe and sometimes just making that clear somewhere in the blurb for the site could help those people make that first entree. With confidence we have sought help and very many areas and avoid bin so Privileged to receive such warm and humane treatment and it’s not always been like that for LGBT couples. Thank you!

[Hidden]

I was my husband’s care giver for four years and eight months until he died last October 30th. We had been together for thirty-one years. Married for almost five years.

I live in Philadelphia, PA. No one had a problem with us to our face. They may have had problems but put it to the side if they did.

I found everyone we dealt with was very happy we were married. It was sort of odd to me. We were together for twenty-six years when we got married. To us it was a formality going through the ceremony. We had been married in our minds for twenty-six year.

[NannaB]

I’m sure there must be and there certainly have been in the past. Caring for anyone who you have a loving relationship with is difficult especially when you go from being a partner/spouse to full time carer. As long as the person living with PSP knows that they are still loved and are not being a burden it’s possible to still be in love with each other until the end.

Best wishes

XxxX

[Atomic55 in reply to NannaB]

Hello NannaB, thank you for your lovely message. Indeed we have been together for 45 years and my role has changed dramatically in the last three years to a 24 seven carer. He knows he is loved and despite his enormous difficulties he still gives the most precious smiles.

Best wishes! xxx

[doglington in reply to NannaB]

You are so right Bev. Its the relationship that matters !!! xxx

[doglington]

Everyone is welcome . Dealing with the issues around PSP tests every one. A relationship is a relationship. Love keeps us dealing with the pain and managing the problems. I agree with nana B xxx

[SewBears]

Welcome to the forum where everyone is welcomed! There’s no judgment here and you might be surprised at some of the topics that are discussed. From the funniest things to the more horrific moments we find ourselves forced to endure. Sometimes I do a read-over, or maybe it’s called a double-take, because it’s hard to imagine what some caregivers end up having to deal with. Everyone on this site is helpful and we all mean well. Please feel free to ask questions, vent frustrations or send us a smile. We’re here for you and you aren’t alone.

❤️ SewBears

[georgeg25]

Hi. I don't care what group you place yourself in. I have no problems with anyone that identifies with groups out with the "norm". Do you not bleed if you are cut? This is a difficult enough journey as it is, who are we to "judge" anyone. My young Daughter was married to an amazing young woman who showed the care and compassion that so many lack. Sadly her wife passed away quite suddenly last month. Does she feel the same pain as everyone else. Of course she does. Love is Love. I send prayers and hugs to you both for the future. This group are amazing and full of beautiful people ❤️. 🙏🏻🙏🏻❤️❤️

[HilsandR in reply to georgeg25]

Well said George. Oh for a more tolerant world, eh?

Hils

[georgeg25 in reply to HilsandR]

Indeed Hils. Life can be hard enough without the bigotry, hatred and intolerance that seems to be around us. Why can we not just accept that everyone is different in their own way. We are here but for a short time. Let us all be the best we can and be kind to all.

[Atomic55 in reply to georgeg25]

Thank you for your lovely message. I’m sorry you and your daughter have been through so much. It’s good to see such positive messages. My dear husband has recently been referred to our local hospice for the next part of his journey. We have experienced appalling bigotry in our lives but also stratospheric levels of love and support.

[HilsandR]

Putting it simply - you are VERY welcome here.

Hils

[daddyt]

PSP doesn't make the distinction between who is who and neither do we as a group.

Tim x

[Atomic55 in reply to daddyt]

Thank you - thats very supportive!

[Atomic55]

You are very kind and I feel very supported here. Thank you.

[LuisRodicioRodicio]

Hi Atomic´55!

I'm sorry PSP has entered your family.

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.

I am not a phisicyan. During the 8 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.

The information I am sending you through the private mail of this chat are suggestions that I submit for your consideration in case they are useful.

Hug and luck.

Luis

[Sarah1972]

Welcome atomic, I just want to wish you well in your journey there will be ups and there will be downs, you will find that the support on here is amazing, there’s not one question that I have asked that has gone unanswered. There is a wealth of experience here. Good luck to you both x

[Atomic55 in reply to Sarah1972]

Sarah, thank you so much that’s very kind.

Mike x

[Sarah1972]

Anytime , where about are you located?

[Atomic55]

We are near Bath in Somerset! 😎

[Sarah1972]

Do you get CHC funding for the hospice? Xx

[Atomic55 in reply to Sarah1972]

Hello - we are at very early stages with just occasional interventions. I haven’t had any information about charges that they may have. I will look at the CHC funding to see if we are perhaps entitled to lower or no costs. I’ve absolutely no experience of this kind of thing at all so I don’t quite know what to expect. Thank you so much for your message. Mike