Latest update on my brother. - YouLookFab Forum

Got back yesterday from 2 weeks in the UK visiting my brother who has MSA. The condition had certainly progressed since my trip in September 2021 . Balance is worse and he can no longer manage without a scooter or a rolator. His speech is very strained and requires much effort for him get his words out which sound loud and authoritarian which is so not him.
He is beyond frustrated and feels useless. He is unable to accept what is happening to his body. Because he is retired doctor he is well aware of what the future holds, this keeps him up at night in addition to the restless legs and loud breathing and many other things related to the condition.
I am so fortunate that he has a fabulous wife who is so understanding and caring. She has organized a renovation of their home to accommodate his growing needs. We talked a lot and started to complete a memory book with him about his life . This will be for his grandchildren when they get older.
His daughter , my niece is a doctor and has recently decided to leave her job and work locum shifts so she can visit more often and help his wife. I am so grateful . Hoping to go back again in May.
As an aside - traveling was pretty painful, super longs lines and lots of confusion at airports, but I'm still grateful for being able to go.

3 years ago

rachylou

Veteran

I suppose it is what it is. It’s a blessing that your family can pull together like this. When my father was ill and after he died too - I’m really thankful for my uncles who came and stayed, helping with the house and so forth.

Cardiff girl

I am so glad that you made that trip Gail,it’s so important to see loved ones whilst they are still with us.l am very sorry to hear what your brother is going through. I always think that medical staff suffer more mental anguish with these things as unlike the general population they cannot choose to be blissfully unaware.l will hold you both in my thoughts and prayers over the difficult months to come.

Inge

(website)

Moderator

This is unimaginably hard on all of you, Gail, I'm so sorry.

The memory book is such a beautiful idea, and bless your SIL and niece for everything they are doing.

I'm thinking of you all.

xxx

Angie

Fashion Stylist

Gail, it's all so very, very sad and hard on all of you. My heart goes out to you.

It's wonderful that you can visit your brother fairly frequently, and are building a beautiful memory book together. Your SIL and niece are saints. Bless them for pulling together and being the very best caregivers. Your brother will benefit so greatly from that - as well as your ongoing support from afar. xo

Laurie

So glad you were able to go, and am very sad to hear about your brother's condition and trajectory.

I love the idea of creating a memory book with him. Not for him, or after him. We have a dear friend facing the final leg of a cancer journey, and he has been journaling about his whole life, writing daily on Caring Bridge, as things are worsening. He's a wonderful writer, and a wonderful man, and this is is the very most beautiful legacy he is creating for his wife and adult sons, and their huge circle of friends and family. He's told us about his birth and his parents, spending summers as a counselor at Boy Scout Camp Bear Paw in Wisconsin, how he and his wife met (when she was 17!), the births of their children, how he got his first real job after law school, etc. It's so great to learn a lot about him while we can still interact with him. There is a lot of love going on. I think the feedback has to be really therapeutic, too. He has set the tone to be very frank, self-effacing, humorous, and touching and that is how people are responding. Very little in the way of platitudes ("You can beat it!" stuff - I hate that), mostly very honest, heart-felt, humorous, and touching replies. he said today that he's having trouble typing, so hope he will use Siri or get other help because he has a lot more to tell us.

Heart goes out to your brother, his wife and family, and especially you.

slim cat

Glad you were able to visit and spend time with your brother and his family - even though it was probably painful and stressful at time ( traveling difficulties included ). He is so lucky to have you and his family being there for hime with help and support. I love the Memory project you have started - wish my father was involved in something like that during his illness.
Wishing you strength, patience and a bit of luck in those difficult times - take care of yourself and your loved ones.

Suz

How meaningful for you to be able to do this, Gail, and what a wonderful idea to make a memory book with your brother's participation. So glad you were able to see him and will go again soon.

RobinF

What a terrible situation for you all to go through. It sounds like you are all handling it as well as anyone could. I love the idea of the memory book, especially since he is able to do it with you. I bet it means a lot to him.

Bijou

Gail, I am sure your visit meant so much to your brother, it was fabulous that you have been able to visit him again. I feel so sorry for him, his rapid decline would be so frustrating and frightening. What a relief that his wife and daughter are so caring and understanding.

The memory book is a wonderful project, something for him to focus on all the great moments in his life and how he wants others to remember him.

It is terrible to lose a parent to illness, but it hits even closer to home when it is a spouse or sibling. Sending you hugs, it must be very hard to see your wonderful brother in this situation.

judy

I'm so sorry. It is so hard to watch someone lose their abilities. And such a challenge for them to cope with it all. My father had Parkinson's for the last five years of his life, cared for by my mother. I too was far away and went for long stays. I treasure those visits we had together. Wishing all of you the best in these difficult times.

Sal

It's a really tragic situation Gail - very sad all round. Very hard on you all and it sounds like you are doing as best you can.

Words are inadequate that's for sure.

Sloper

I'm very sorry Gail. Hopefully having his daughter nearby will give him and his wife) some comfort.

Gail

Thank you everyone.
Since posting last week my brother has tested positive for COVID. He got some anti viral meds to take after 3 days it took a while to get them prescribed, he seems to be managing quite well. Today my SIL tested positive, so far cold symptoms for her and the intense fatigue that my brother has also. Shame I'm not still there to take care of them- I had the virus in January.

Anonymous

Gail, I am sorry to read of this sad situation for your brother and his family. IhD a first cousin that had this debilitating disease He did not have the family support and his wife divorced him. He was a courtroom lawyer do loss of being able to talk was the hardest. He was misdiagnosed at first and it took a long time to find out what was really wrong. At first he was told that he had MS which can be similar. I hope everyone is recovering from Covid with no lingering symptoms. DSIL will be having surgery in April which she hopes will help with the lingering Covid affects.

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