What can we do?

[Cheriecook]

Hi all...this is my first post here. My beloved brother in law...my husbands oldest brother, has recently been diagnosed with bulbar onset ALS. He's been told that he probably had 6 months to a year to live. He is a silver star decorated vet of the Vietnam war (as a medic) and is simply the lifeblood of his entire family. He and his two brothers were given up by their parents as young children (he was 7, next was 4 and my husband was 3) to the social services system. Luckily they were kept together and he was absolutely the parental figure for the two younger boys. A close family...an exceptional man...of course we are devastated. What I want to know is what can we REALLY do for him that will matter. We have all the usual things in place...doctors, appointments and rides to same...we visit we talk...we try to share the best memories. What I'm really asking is: what are the things we can do for him that have made your lives truly better, more comfortable, more meaningful. I can think of no better group than this to ask.

 

[lgelb]

Cherie,
So sorry to hear about your brother-in-law, but glad to learn he has such strong family support. We try not to generalize about more tangible support since everyone is different. What is he experiencing difficulty with right now...talking, eating, mucus, breathing...? Helping him sort/access high and low tech aids is one thing I would think of.

Best,
Laurie

 

[Nikki J]

So very sorry. It sounds like you are doing the right things. If he is bulbar is he pretty mobile? Outings, a family trip? Making more memories? But otherwise I want to be treated the same as always and I want to be useful in some fashion. It sounds like he is the family leader- can he still perform that role as adviser at least without it being condescending? ( I imagine he is hooked into the VA for benefits? Even so maybe give him a link to the sticky on VA benefits. )

 

[affected]

Sorry to welcome you Cherie.

I would suggest that you get him learning and using some technology for communication right now. Talk to him about the importance of being able to communicate with everyone when his speech is completely gone. It is easier to learn to use the technology well before it is really needed and the only way to communicate. Not just for him, but for the family to adjust to working with him this way too.

Keeping the ability to communicate beyond just his needs may be the best gift you can give him at this stage.

My husband was also bulbar onset, but he also had FTD. He could not concentrate enough, or understand the need enough to learn to use technology even though he had it all there from very early. We were quickly reduced to picture, word and alphabet charts and could only really try to understand his needs, rather than have conversation anymore.

Keep asking questions whenever you need to!

 

[Cheriecook]

Hi Laurie...talking and breathing are his biggest problems...but not critical yet. He has bi pap to rest his lungs at night. I'm just trying to think of anything that will help and or feel good for him....he's not one to ask for ANYTHING and I suspect his symptoms have been going on for a lot longer than he lets on. I was looking for someone who might say..." Oh massage felt great for me"... Or "I took the trip of a lifetime".

 

[KimT]

Does he have a wife and kids? What I would offer depends on this.

Maybe a gift certificate for massage...a therapist could even come to his house. I would do research on communication technology which would help him stay connected longer. Make sure you know his wishes and honor them.

I would offer to grocery shop, cook meals, run errands.

The most important thing is to stay connected and assure him he will have you and your husband until the end.

 

[lgelb]

What are his hobbies? As things progress, you might like to help him stay in the flow as long as possible. Advance research and even searching here, depending on the pursuit, might facilitate that.

As you say, these might include travel before things worsen, for sure, but it's also the day excursions/moments that make memories.

Kim is right about massage, which is always great, and if his home is lacking anything that will make his future life easier (from accessible shower/toilet up) that's another possibility to help with.

 

[swalker]

The most important thing for me is to experience life to the fullest every day that I can.

While I have always looked at things this way, I found a renewed focus on this after my diagnosis.

I value "things" a whole lot less now than I used to. I value experiences and relationships even more than I ever did.

Are there places he would like to visit? People he would like to see? Conversations he would like to have? Help arrange for him to do those things.

Here are some examples from my life:

I love animals, and wildlife in particular. We have managed to go on some wonderful trips to watch and photograph wildlife. We took 3 trips to Yellowstone last year as well as 3 trips to the Grand Canyon.

I love to camp and recognized that my days of camping in a tent would be drawing to a close. So, we camped as much as we could. We will be using a trailer this year. When I can no longer do the 3 steps into the trailer we will get an rv with a wheelchair lift.

I am close to my family, so took trips to visit them and we hosted their visits as well. They accompanied us on some of our Yellowstone/Grand Canyon trips.

While I can no longer ski on regular skis, I participate in the adaptive ski program where I live and regularly ski on a bi-ski. Friends and family go with me and we have a great time.

I have also found new interests,. I have learned more about wheelchairs than I thought possible! I am very curious about how they work and decided to just go whole hog and figure them out at a pretty deep level. I can't effectively work on cars anymore, but I can work on wheelchairs some and find it very satisfying. My good friend helps me out and we have a wonderful time doing it.

His answers will certainly differ from mine. I think the point is to help him constructively explore new ways to do the things he has enjoyed in the past and to find new things to do that are possible with his disability.

And, most important, be there for him as he experiences life.

Steve

 

[gooseberry]

Cherie, I grew up in Keeseville. My husband wants to be included in the decision making. He also fretted about things he did for the household he cant do any longer. So when people want to help, I often give them those jobs. Laugh, joke, do all the things you would normally do. Watch for signs of depression and anxiety because they are common.

Smoothies are pretty wonderful because they are thicker and help with swallowing issues and can have practically the kitchen sink thrown into them. So I would say a good smoothie maker could be very helpful. Learn how to take care of him so the caregivers get a break.

Just a few thoughts

 

[KimT]

Cherie,
I just saw your location. I grew up in Port Henry, went to Moriah Central. Our schools played football against one another and Peru was a great rival. Small world.

 

[Nuts]

Cherie,

Massages are a favorite. Time with family, priceless. We got a dog for my husband, and she's been very good for me, too. Oh, he'd have never expected it, but my husband now loves his manicure and pedicure. The full treatment with lotion and scrubs, etc.

My husband is limb onset and no bulbar symptoms yet, so his favorite activity seems to be eating out. we live in the sticks, so going to lunch or dinner is a three hour process. It eats up the day, but it makes him happy.

My husband loves visitors. I now warn them that they may be entertaining themselves, but we live on a lake so that's not a problem.

Matt has gone to Colorado hunting every year for decades, so we still go. This year his brother will go with us as it's a lot of work for me, but it makes my darling happy to do what he's always done, even if on a different level.

Becky

 

[vzandt]

Cherie
My husband was limb onset. It affected his legs first. He was very sad one night and he told me he just wanted to build a snowman. I went outside..got buckets of snow and had him build a small snowman in the living room. Granted...it wasn't exactly what he had in mind, but it brought a huge smile to his face so it was definitely worth the mess. I guess what I'm trying to say is go with the flow. Listen to what he wants, and do whatever you can to make something happen. And laugh.

 

[Cheriecook]

I am seriously considering setting him up for some home massages. IDK if he's ever even had a professional massage, but I think it might be a good way to keep him in touch with his body and be stress relieving as this awful illness progresses.