Tired

[soonerwife]

I think that is a natural reaction Lenore. Watching our PALS struggle is so difficult. That doesn't make us bad. It makes us human.

 

[Lkaibel]

Thank you all. It's such a roller coaster. This morning Brian had a mystery ankle pain and almost did not go to the pool today. Turns out he ended up going to pool and yoga and his ankle is okay now.

On a good day, I am so glad that nine months out he can still do pool and yoga and drive. On a bad day I just want one more day of barely being able to get him to sit because he is full of "projects"

I talked to my brother in Hawaii today for two hours. I felt so much better, The best thing was he never asked me how Brian was doing, but at the end of our talk about everything in the world BUT ALS he said "give Brian a hug for me". I love that guy

 

[scaredwifetx]

Lenore, your post brought me out of my hiding. I have been reading everyone's pays but unable to post much myself. I to am struggling with being so very tired of this disease. Its taking my life as well as Steve's. Does not matter where iI go or what i do is on my mind even when i sleep and i don't do much sleeping. I have to stay busy or go crazy. I am on Sertraline but it's all still there evton the guilt.

I catch myself how long this torture will go on for us both. I can't even bare those thoughts because of guilt. I love him to pieces but can't see myself watching the decline worth his health, my health and our marriage. The closeness we have always shared is also being robbed by the thief. I feel so bad ranting here when so many here have it worse.

We are getting to the point where there is very little communication. We should be spending our time together talking, sharing and laughing. I feel guilty for every decision I make.

We are all not wrong. The monster moved into our home and took over our life's. We are all tired of trying to fix something that can't be fixed. I really hate what ALS does to everyone here. Its hard for me to even communicate with b my friends here. I still think of you all often.

Take care of yourself Lenore. Trust me, i learned that lesson the hard way.

 

[Jrzygrl]

Deb,

All I can say is "Ditto". I hate what this has done to "us" and feel guilty for wanting it to be gone.

 

[affected]

DITTO and then DITTO again.

HATE HATE HATE that ALS

 

[pittsburghgal]

After reading the posts from Lenore, Deb and Jrzygrl, I realized how brave it was to be able to admit that although you love your PALS, you want this to be over. I have felt this too but am filled with guilt whenever I have this thought and have not dared to express this to anyone.

My husband was diagnosed in 2011 and the last 2 years have been brutal both in the amount of care he needs from me, the sole caregiver and in watching the steady decline in my spouse. He has a trach but is not on a ventilator--just BIPAP at night. When I ask him if he would want to go on the ventlator when it becomes necessary, he will never answer me saying that he needs to think about it. I have this tremendous fear that he will tell me yes, he wants to go on the ventilator and I honestly don't know how much longer I can do this. I read Sue's posts about her husband being on a ventilator for 6 1/2 years and I am so afraid that this will be us.

I feel like I have completely lost myself. I am only Frank's caregiver 24 hours a day, every day. I feel so alone. I want this to be over-- for both of us-- so I can try to put the pieces of myself back together again.

Sharon

 

[Jennanne]

Oh, and how is this for truly terrible confessions. I love Brian to bits and I want him to never die, but I want this to be over. I feel like ALS sits in my car, my office and all over my house all the time. I feel like it's a freaking stalking monster that just never, ever really goes away.

Slow progression is a beautiful thing, we appreciate it deeply. Yet the monster sits and waits.

I am going off to work and hopefully a better week. I slept nearly nine hours and it helped a lot. I may be a terrible person sometimes but at least I am an honest one.

This is EXACTLY how I feel... A stalking monster that sometimes lurks in the background quietly and other times lurches forward. We had a very tough clinic visit last week, hit from all angles. First our doctor recommended that Jon stop driving (which I knew was coming), then PT hit us with getting him an AFO for the other foot, a rollator and to start thinking PWC.

The toughest was the RT who recommended the cough assist. My PALS and I are both RT's...

My rational mind knows that anticipatory planning needs to be done... now. I am just having a difficult time wrapping my mind around it.

Jenn

 

[vltsra]

Dear Lenore, I can relate to everything you've said. My PALS is also on the slow track, and I'm thankful for that. It is affecting his left hand and arm for now, but the other day he told me he can no longer lift his fingers and I started to cry. There is not a single day when we can escape from ALS. I feel like it has stolen both of our lives.

You are NOT a terrible person. I think we all have felt this way. I try not to think too far ahead, but I do worry about how I will deal with the years of caregiving that will be required of me, especially with a slow progression. I am alone in this...there is no one to help me with caregiving unless I hire them. Like Sharon, I worry too how I would deal with caregiving if he chooses to be on a ventilator. I have a few friends who lost their spouses to something very quick, and it seems easier on them. Having to sit here and watch our PALS suffer and not be able to help them is emotional torture. It is also painful for me to listen to him tell me he just needs to get over this illness and get better.

I also worry about how I am going to handle all of the practical things. When and how I will sell our lovely house with all the stairs, what to do about the weight set my PALS won't get rid of, or the sports car that he doesn't drive, or all of the other things that he won't part with. How I will manage his other responsibilities in addition to our own household, which I'm handling now. Even these things feel overwhelming, let alone the disease.

Thanks Lenore for sharing your feelings and letting us share ours.

V

 

[Narrowminded]

Sharon and others I totally relate. When Brian was vented, I really don't know what we thought, but I'm sure we never thought we'd still be here 6.5 years later. What I really hate is what it has done to his body and to us. Every day I look at him and weep inside. If I had only known, I would have tiptoed lightly around the vent idea. It still would have been his choice of course, but it's one of those hindsite is 20/20 things. The devastation is awful.

Like others, I love him dearly, but not sure how long I can continue.

Hugs everyone,

Sue

 

[Lkaibel]

I think I feel some extra guilt sometimes about wanting the ALS to be over because of Brian's longstanding plan to get on the plane to Switzerland when the time comes.
His progression has been slow, but from the very start he told me when he planned to make that trip when he could no longer care for himself. In his mind, that means being full time on a walker or losing use of both hands.

As things have progressed, he has continued to be clear on that part. Even before he had ALS, he let me know that he had no intention of becoming a disabled old man.I think the combination of seeing his father melt away from Althiemers, and his mother die a pretty ghastly death from cancer (it had gone to her bones and was very hard to control the pain as it got into nerves in the spine) really set his mind in that direction.

So, I wait for that appointment where they say "you can't drive anymore, need a power chair, etc.", or other indicators we are there and I know he will turn to me and say "It's time". I don't want anyone to think it's what I want. I only want him to be able to leave this world his way. I have let him know he could never be a burden to me, that the least I could do for him is everything. He has let me know too that even if he was intending to go til the end he would be in a nursing home because he would not allow me to take care of him like a baby.

I can live with his decision, but I just hope he really knows I mean what I say. I think he does.

Then, I try to stay in the now. We still have plenty to enjoy together.

I read the words of CALS and PALS who have gone the distance. I see my friend and her husband, now half in, half out of reality after 4.5 years with ALS and in a nursing home. I see you have had some time and joy together we will miss but I sure hear the pain and the struggle too. I feel pain and struggle with my driving husband who goes to yoga and the pool. I realize there are no "right" answers, it's just what each PALS decides.

One thing that comes to me often is that THIS will never be okay. What has happened to us will never as long as I live be "okay". Before ALS was in the picture, I use to say that I got the dream, that I knew few have what we have. I hope I can come to peace with it. Peace is so hard to come by.I make myself think of what my life will be without him because what can we ever do but move forward?

Honestly, I don't know how long I could care for anyone on a vent either. That would require a lot of home support to be viable to me. I know Steve Gleason's wife does it with two full time care staff. It is very difficult to impossible for regular people to afford that, and I have no clue how one person handles it or someone with those 24 Medicare hours per week. There are a lot of amazing people here in our group.

 

[affected]

You are so right, what happened to Chris, what happened to our dreams will NEVER be OK. Anyone who tries to tell me some trite crap could notice my eyes glaze over as I hold my breath and wait for them to just shut up and go away. Usually they don't however because they are wrapped up in whatever idealist idiocy they are spurting.

 

[adrivtham]

wow, reading this posts, describe a lot of my emotions. I love my husband dearly and can't imagine my life without him but this live is no live anymore. We both just exist.
I feel like everybody else here that has the conflict of wanted this struggle to end but not to lose the love one.
no answer is good. I hate this ALS ... I am tired too.

 

[Lkaibel]

I think a priority for me now will be finding ways for Brian and Iive with ALS until he decides to check out. I told him this morning we need to focas on what we can do and what we have not what we have lost or can't do.

I wish I had more comfort to offer those in advanced stages but I have not walked in your path nor does it appear now that I will. If you have love you have a lot. I know even now I am thinking of ways to get more help. Help for me personally and for Brian. I know money and other issues can make things tough.

We all deserve so much better than surviving .

 

[gooseberry]

Lenore you might want to thimk about grocery delivery. Shipt provides the service here for 99 bucks a year. Some areas have walmarts that deliver....others you order online and just run to pick things up. Uber eats will also pickup your walmart grocery order.

Look at a cleaning service once a month. To know your house will be scrubbed and you wont have to do it is freeing. Many services do laundry and dishes also.

Generally I cook 2x a week now. I cook extra chicken, beef, etc and throw it in a salad later in the week. I buy pre portioned food as much as possible and have some half cup and cup containers to portion things out. I do this 2x a week also.

I have simplified a lot. Amazon prime is a good use of 99 bucks. I get bulk stuff and unusual things like balsamic vinegars from there.

Look at all the things you have to do that you dislike and try to figure out how it can be different.

 

[diagnosed2016]

Though I am in not in actual "caretaker" status yet (because he is still independent) I am exhausted ALL the time from being overwhelmed by the present and future of what we are dealing with. I am Overwhelmed by all of the things that have now fallen into my shoulders and that I don't have time to do in a day and overwhelmed by the emotional weight of what I know is coming down the road. It's an exhausting disease for patient and loved ones.