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ARCG

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I am new to this forum. My husband was diagnosed several years ago, although looking back, I see the changes in his personality well before his diagnosis, but didn't know what it was at the time.
I try to take things one day at a time, but finding myself increasingly drained of energy. There are so many balls in the air simultaneously and so many people depending on me, I find myself feeling overwhelmed and drained.
Reading your posts helps, as I see that I am not the only one who feels this way.
Do you find that people want you to be 'happy' and try to cheer you up? In the past. I was generally a cheerful person and now that I am faced with navigating all the things that must be taken care of for my husband, I don't have time to make everyone else feel ok about what's happening. it takes all my energy to take care of him, make sure I have the right equipment, make changes to the house, meds, etc. etc., you all know what I am talking about. No one seems to get how emotionally draining this is. It's not just putting the lifts in place, it's what it means to see my once strong husband in a harness and know how he must be feeling. Every step of the way, every new system, breaks my heart.
I guess I just need to rant a little. I am also not a young woman and I worry about what will happen to him if something happens to me.
 

lgelb

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Welcome, Houston. Sorry you are here, but stop by for a rant any time.

It is hard to face people who express empathy for about 5 seconds and then run back to their good cheer. They simply can't deal.

And yes, every loss is a real, tangible loss that we will never have back, though perhaps there is hope on the horizon longer-term.

We can only do the best each day, with what we have. As you say, health is one of those resources that is not infinite (as ALS reminds us) and CALS are always vulnerable. But if you have a plan (legally) in place should something happen, you can rest a little easier, and every CALS deserves that.

Best,
Laurie
 

affected

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A big welcome ARCG - oh I really hear you!

I find even now people want me to be great, be over it, all the time.

What we go through emotionally watching one we love totally go through this is huge and should be acknowledged and it's OK to feel the whole range of emotions!

I'm glad you have started posting!
 

ARCG

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CALS
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Thank you for your understanding, My husband is an only child, his mother passed away years ago and his father, while in good health, lives far away. My siblings also live far away but they visit very often to try and help in any way they can. My friends and family have convinced me to take a few days away to get some rest. I have a close friend who has been staying with us for extended periods of time and my son is going to come stay at the house as well, I am nervous about leaving, it feels almost selfish, since my husband can't get away from this disease, I have such mixed emotions all the time.
 

soonerwife

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Welcome ARCG! You have found a great place for support, rant away! Sorry to hear about your husband!
 

affected

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ARCG please do take the respite!

You don't realise until you leave your PALS with someone else that it will take multiple people to fill the role you have been filling alone.

What this should tell you is that you will burn out if you try to continue without help and without a break. If you burn out, what happens?

So this is not selfish at all, this is being realistic and making this sustainable.

I finally planned a respite and was going to take 5 nights out staying in a beach house. My PALS was far less than impressed but I spent weeks and weeks organising it. I would only be a 20 minute drive away so would be available in an emergency.

There would always be at least one adult family member here, always two overnight, and a paid staff member here all day every day. No one would do any yard work, and no one would also be working to earn the money - just caring for my PALS and basic housework inside.

So to replace me would take two, often three people, but all those would only do one third of what I was doing.

My PALS died a couple of days before I was scheduled to go so it never ended up happening.

So do start taking regular respite breaks now - your family will learn a lot about life and will have a richer relationship with your PALS if they get involved now :)
 

ARCG

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Thanks, Tillie

I probably will, it may be the last time for a long time as my husbands progression seems to have speeded up. I hope I can relax and not worry. I just want to sit and do nothing and hopefully sleep uninterrupted.

I wonder if the respite is worth it, as I think about all the things that will pile up, that no one can do besides me, while I am gone, paperwork, etc. it seems like we have a new issue cropping up every day, sometimes several in one day....I call it 'crisis du jour'. I am so jumpy all the time. I am going to the beach as well and take some books to distract my mind, which never seems to shut off. I am trying to be grateful that I have the opportunity to get away, but it's hard to be grateful for anything these days. I hate this disease and what it is doing to us. Even when I get out for a while to run an errand, when I get home there is a new surprise issue to deal with, not just the ALS, but as you know, life and all its headaches goes on and things need to be taken care of. I call it life interrupted, because any tasks I plan for the day, get superseded by a new unexpected problem.

Annie
 

ARCG

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What a terrible day...one crisis after another and now I can't sleep. Why does life keep piling problems on, isn't dealing with ALS enough for any family to handle? There are so many issues that need my attention. I don't expect that I will ever feel happy again in my life, but does life have to keep throwing curve balls at me. I am trying so hard to be strong for my husband but how much can one person take?

There have always been ups and downs and bumps in the road before ALS hit us, but it wasn't every single day. I can't even catch a breath without some huge dilemma to be resolved. This is just crazy. I feel like Job in the bible. Tomorrow is going to be another terrible day. Lots of phone calls to try and solve the latest issue, I won't bore you with the details, but suffice to say, this one will drag on for weeks and I am sure other things will crop up, they always do.

Ann
 

affected

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I hope you can get some sleep ARCG xxxx
 

Narrowminded

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Annie, welcome. I’m sorry it has to be here, but you will find here is a wonder land of mini respites. As you read around you may find solutions to your current dilemma. Use the search function. It may help you solve things much quicker. That in itself will be huge.

I totally get what you are feeling. I too would like to encourage you to get away for a few days. I’ve been playing this game for over 13 years w/my husband trached now for 7.5 years and to be honest, 1 week every 6 mo is really needed. However, due to other issues with help I generally only manage 1 week per year. That one week is huge in helping me make it thru. The first time I went was hard, it as you do it, it becomes easier.

While we feel bad our PALS doesn’t get the chance we learn to realize there is not one thing we can change about this disease and it’s progress. Anything that might happen would happen whether or not we are there. That said, if he would be sick other than the ALS, I would not go. It is the only way you’ll get thru this. Also, if you are not healthy physically, emotionally and mentally you won’t be able to effectively care for him.

Have you looked into hospice as palliative care, not end of life to give you some support on a regular basis? Can you get someone in once a week so you can go have some me time? Maybe a massage, mani pedi or just go sit at a park?

One thing that definitely helps me is spot on healthy nutrition. Staying away from sugar, even though it’s a go to for me. As long as I avoid it, I sleep better and feel better. Also, if you can get outside for a walk makes a huge difference as well. Sometimes you can get someone to spell you for 30 min. Or maybe your PALS is still able to stay by himself for 30 min?

Actually some of the people who understand the least about the emotional drain are those who should understand more, like one of DH’s sisters. I’ve also learned, starting to cry occasionally in front of them helps them t get it. Now not every time, but while trying hard not to so they understand the pain is very real and you’re not just a blubbering idiot.

We are here for you, rant away

Hugs,

Sue
 

ARCG

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CALS
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1/2015
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Thank you for the support,

I feel a little better today, one day at a time. I try to exercise and did go for a walk yesterday.

One of my life was like pushing a peanut up a hill everyday, only to have it roll back down overnight. I think it's more like a boulder.😜 I am making progress on my latest crisis.

My brother was supposed to come for a visit, but was just diagnosed with flu and pneumonia. I spent some time today trying to get some leads on home health care for him, he lives in a different state and his wife has a bad knee. He is feeling better this afternoon. Fortunately, he has an attentive son who lives close by. He is not young either so I am worried about him. The flu is bad this year, my daughter got it at college but had to stay at school, because she can't bring that home. She is better now.

Ann
 

ARCG

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CALS
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I took the respite and had a nice time, until Sunday, which as my luck would have it, I tripped and broke my foot. You can't make these things up! No on would believe it. Fortunately I am in a walking boot, so am not totally laid up, which is a blessing.. Trying to look at the bright side. I have most of the systems in place for my husband, thank goodness, so not as bad as it would have been 6 months ago when I was still manually transferring him, so there's that.

But I think I just have a black cloud over my head, a couple days after I got home, my daughter was rear ended by a texting driver. She is ok, thank goodness, but yet another hassle to deal with. And the beat goes on....
 

affected

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I broke a toe while caring for my Chris and it really was a game changer - I would scoot up and down the house sitting on his wheelie walker as he was hardly using it by then. Those standing transfers were really tough for some weeks there!
 
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