In sickness and in health

vltsra

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Today is our anniversary...16 years ago we were married. Most people just say these words as part of their vows; we CALS live it every day. We have now spent 25% of our married life with this unwanted third party.

I was having a good month this month; I have gotten the contractors on board to start the elevator project; got the non-operational sports car moved out of the garage so the contractors can actually do their work; shopped for, bought, and had the bidet toilet installed; got an AFO for my PALS. In addition to managing what is left of his business and working part time at mine. He is still progressing but slowly; though I am a little concerned about the amount of time he now needs the Bipap after starting on it just 4 months ago.

Then I scrolled through my Facebook feed and noticed a post from some people we were friends with. They had a lovely get together at their house with many of our other friends. We would have been there in the past but now we were not invited. Despite the fact that they have been pretty darn scarce since diagnosis it still made me feel really sad.

On a more positive note, a good friend got good news about her cancer; she went through chemo for 3 months and looks to be clear. And I have planned a trip to Yellowstone for the end of August. I was actually able to get ADA rooms at the lodges within the park! Thought that would be impossible but there were some vacancies. I know my PALS is often fatigued and short on energy, I know he isn't always in the best mood and feels frustrated, but I so wanted him to have this experience. I told him if he really is struggling we can turn around and come home. He is still able to get up and out and now is the time for us to do these things. So I'm hoping we will have this experience together.

V
 

lgelb

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I too hope Yellowstone works out, V. I know there are numerous experienced Western parks travelers here so let us know if you need any itinerary/packing advice.

Re your friends -- it hurts to become seemingly invisible. Many people just can't deal -- or think they can't -- when they don't have to.

Best,
Laurie
 

Jrzygrl

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V,

I'm at about the same percentage as you. Married 26+ years, diagnosed 5, 7 since the search for answers started. I have thought of our marriage vows often too. The reality of those words.

I get the Facebook thing too. I'm conflicted about social media. I'm glad I can connect with friends, since I don't even get out of the house much lately, but am sad about all the things in which we can no longer participate. Even when we were invited to friends houses for things, we often had to decline due to accessibility issues.

I agree, get out and do things. I wish we had done more while DH was more mobile. He has decided that he is most comfortable staying home now, and any trip outside the house causes him a great deal of anxiety.

Fingers crossed that all goes well on the Yellowstone trip. We stayed in a cabin on the rim of the Grand Canyon one year. It was awesome and I'm so glad we did it when we could.

Sending big hugs!
 

Narrowminded

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V I too hope you can enjoy your travel. DH never wanted to travel anywhere once he was at walker stage. He did go a couple of places in his wheelchair -church was one, but also to one concert before he gave up trying. Vacation though was off the table. If he will go, go and enjoy the best you can.

Brian had the beast for 14 years we made almost 34 years (2 months shy), so nearly 1/2 of our married life was with the beast.

I totally get it about the friends and family. I actually asked my SIL at one point to not let me know about the parties, as it got way to hard to always decline. I’m actually on FB more now than I was for several years. I don’t post much, but scroll. In fact just spoke with my counselor about the isolation this past week. It’s one of the very hardest things I think we deal with.

Hang in there my friend, you got this.

Hugs
 

Nuts

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V, I hope you have a wonderful trip!! It's a lot of work, but our travels are some of my best memories.

As for the better or worse--this was, in some ways, a gift to me. That sounds terrible, but stick with me. Matt always took fabulous care of me. He was more creative than me, and constantly surprised me with wonderful romantic adventures. For almost 20 years he was better at showing his love to me than I was to him. I loved and adored him, but just didn't have his capacity for grand gestures or the energy to accomplish everything he did.

Then came ALS, and we all know what that means. While I would trade it in a microsecond to have him back, I finally had the opportunity to show him how much I loved him. To be the one doing for him. He let me know that he learned even more about doing the right thing for people based on how I cared for him. In many ways, ALS made a wonderful marriage into an epic adventure.

When people asked how I managed, I explained that he was my husband and our life was together. Aside from not being able to spend as much time with our children and grandchildren, I didn't miss the life we didn't have--I felt privileged to live the life we had together.

Those people who don't invite you. Is it possible that the think they'll make you feel worse about your situation if you have to decline? Many people just don't know how to handle this situation. I'm struggling now with someone I thought was one of Matt's best friends. He lives just down the street and would not come, despite being asked, to see Matt once he was bed bound. He couldn't handle seeing another friend deteriorate and die. He is now struggling and apparently visitors are wanted. This will be my biggest test of forgiveness. I need to go see him.

Social media was a huge help to us. I wasn't sure it would be, because pre-ALS Matt was very private about his health and medical conditions. Thankfully, once he came to grips with the beast, he went very public in his own effort to spread awareness. Because Matt loved to get out and to share his adventures, all of his friends and acquaintances knew what he was up for. We had wonderful friends who organized get togethers at our house with specific groups, and people were excited to come.

Accessibility is an issue in visiting other people's homes, but it sure would be nice to at least hear from friends that they miss you and wish you could join them. Maybe they could be taught by reading posts thanking other people for reaching out. Sometimes I think that what we have to share with the world includes lessons on how to interact with someone who is dying. Often the simplest answer (treat the like you always did as they are the same person) is the hardest to find.

Back to that trip. I am so glad that you were able to get the accessible room! Enjoy!!

Becky
 

vltsra

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Thanks Becky...glad to hear your love story with Matt. My PALS never spent much time at anything but his business, except perhaps his mom. I have always wanted him to have some wonderful experiences with me but I've had to work on him to do anything, even when he was well. I feel fortunate that his progression was slow for the first few years and we were able to take a trip to Greece last year, which I planned completely on my own. I was hoping to do some things this year but had to cancel everything when his condition worsened. He's much better after we introduced the bipap and has told me he will go.

I hear you about Matt's friend. I like to think I will be able to understand illness better than before and be more giving but who knows how I'll feel as time goes on. People do disappear. It is hard enough for me to see my PALS this way and I've been here through every loss. I think it is even harder when people haven't seen him in a while and then see how much weight he has lost and how much difficulty he has walking, using his hands, and breathing. I am also noticing speech difficulties of late.

Anyway mixed feelings too about FB Sue and Jrzygrl! I will say that I am thankful for it because I had lost touch with some really good friends along the way and was able to reconnect. They've actually been in touch more than some of my local friends. Also get to keep in better contact with my family who live far away.

So will keep you all posted on Yellowstone. Hopefully we will be there in a month.

V
 

Narrowminded

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Happy to hear the trip is still on for now. I’m praying you can go and have some very good memories.

I so understand their obsession with their businesses. Brian did the same. That was hard.

Hugs
 

vltsra

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So, as if the caregiving stress was not enough, yesterday I was broadsided by a woman who had decided she had gotten off on the wrong exit and needed to get back on the freeway without stopping at the stop sign. My 2010 Prius, which I was going to keep until I need a handicap van, was likely totaled and I was taken to the ER. I'm in a lot of pain and am pretty banged and bruised up but hopefully nothing serious.

So the car I was going to drive to Yellowstone is no more, and I will need to decide what to do for a vehicle. Also am concerned about taking care of my PALS with a sore back, shoulder, sternum and probably other aches and pains that I haven't felt yet. I do have a caregiver but she is off Thurs to Mon this week. Luckily my PALS' friend has offered to come over tomorrow and other friends are bringing dinner.

I can't recall which of us CALS said we think nothing else bad should happen to us because the worst already has! Life isn't like that though. Yikes.

V
 

Jrzygrl

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Sheesh! Why do all the idiot's have to appear when you least need it.

Glad to hear for the most part you are OK. That is the most important thing. I hope you have time to heal and get everything worked out before the trip.

Hugs!
 

lgelb

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Very sorry, V. Your insurance may pay for a rental while your car is being repaired or if it's totaled?

But most of all, take care of yourself...don't forget hydration, rest (yes, I know, but still), and nutrition as you heal up.
 

affected

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oh no, that is so horrible for you! Please take all the help anyone offers, even maybe ask a friend to coordinate help for you so that you can heal properly first time around. 💜
 

KateEmerson

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So sorry Vltsra! I had an injury ( shoulder separation- my horse threw me) when in full caregiving mode and thankfully didn't try to soldier through it. I took all offers of help and even asked which in the end helped me get back to full care sooner. It would be great if there is any way you can get the help to allow your body to heal , especially with your trip coming up. Wishing for a speedy recovery, Kate
 

ReginaS

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So sorry to hear about your injury and damage to car. I also thought any other challenging life events should be on hold during ALS. I will keep my fingers crossed that you can get enough help, heal just fine and can figure out the car situation.
 

vltsra

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Rats...my bike, which was in the back of the Prius, was also damaged. It has been one of the few things that has kept me sane.
 

Narrowminded

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V I’m so very sorry this has happened. Praying you get all the help you need and please don’t push it (I know all to well, easier said than done). Have a good convo with your DH and explain how much pain you are in and that you will be helping him, but if he could please help you too by keeping it simple could help.

I’ll be praying for a quick recovery and all the help you need and more.

Gentle Hugs
 
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