A Place to Speak My Truths

[RSV Aus]

Lenore, I'm so sorry you find yourself here going through what you are, but you're absolutely right - this is THE place the speak your truths. Thank you for sharing your story and literally summarising exactly how most CALS feel most of the time!

This disease is out of anyone's control and it can leave you feeling helpless and overwhelmed. And you're right, so many people around us even if they're trying to help, just don't understand what it's like, the daily struggles we go through. They have these wild expectations of you to "be positive" all the time and if you're not then somehow you're a failure?? So there's this constant pressure to have it all together and be the calm in storm all the time, and it's really tough.

But as so many others have said, CALS plough on because we have to - because our PALS rely on us and we don't want to let them down, and because life and all our other responsibilities go on relentlessly. Be kind to yourself. You are in a really difficult situation and you're doing the best you can Do you get any "you" time? Any opportunities for respite, even for a short time?

 

[Lkaibel]

The ALS Society here has been great, but sometimes I think they are mostly great for the slow progressors. They seem like a great place to get a bath chair or walker. They want you to join fundraiser walks (ironic with PALS...). They are bright and perky. I hear tell they have more heavy duty items in the loaner closets.

 

[vltsra]

Lenore, thanks for this thread. I can so relate to everything you say. I've been staying away from the forum of late; my husband is a slow progressor too, but despite that it is still progressing. His left hand is all but useless, and he told me last night he can tell it is starting to affect his right hand. It won't be long before he needs much more help. I keep trying to live in the moment, but at the same time I'm wondering when we'll have to move out of our house. Everyone tells me I'll be fine, I'm so strong. They don't understand how alone I feel and how hard it is to be in this situation and be the sole caregiver. They have no idea the price we all have to pay to be strong all the time.

 

[affected]

Ugh I hated it when people who have never been through anything like this would tell me that I would be fine and how strong I am... clueless!

 

[Jhill]

Being a CALS was the hardest thing I have ever done, both physically and emotionally. Bob died six months after being diagnosed and, even in that short period of time, I felt totally overwhelmed.
I also was told many times that I was amazing, but I was just trying to keep up with everything happening at incredible speed. When this is what life hands you, you don't have a choice. Just remember, you're doing your best and doing it with love. Bob always told me that he felt the love in my caregiving and that's what I want to remember.

Hugs to all,
Joan

 

[Lkaibel]

Joan that is lovely. I hope Brian always feels my love.

 

[diagnosed2016]

I imagine that a facade of strength and calm is probably what most of us CALS project to others. Outside the situation, people think they would just break down everyday all day, but you can't do that. If I cried every time I wanted to about our reality, I would get nothing done ever. I would be a negligent parent. I would be a negligent caregiver. The house would fall apart under a mountain of laundry and trash and dirty dishes. The pets would die of malnutrition. You grieve and do what you have to do, all at the same time because you don't have the luxury of pure grief. It's just not an option.

 

[Nuts]

Thank you for this thread--it's perfect for us.

I just can't let myself grieve. I'm afraid that if I started I'd lose my mind and collapse completely. So instead I do whatever I can to fulfill Matt's wishes so that I have no (or little) guilt when this is over. I don't know how I'll fill the void, but I think that perhaps sleep will be an early objective.

I am struggling with people who ask how he is doing. Many are very sincere, which I appreciate, and I do have family, friends, and neighbors who are concerned about me. Some have startied bringing meals. I had no idea how wonderful that would be. This is something that I will remember and do for others in the future. It's not a cliche. It's a godsend.

Lkeibel, I don't know how you handle your mom and your husband. I'm a wimp. I turned mom back over to my sister. Again, I'm fortunate.

My brother in law and his wife saw me explode a couple of times on this trip that we are wrapping up. They heard the angry, tired, frustrated *****, and then saw me return to that calm mask that the probably recognize now. I think it helps to vent a bit in front of people who understand and care, if you can find them.

Enough...I'm rambling. This is your thread. Keep going!!!

 

[Jrzygrl]

Lenore,

I get it.

When we're out, some may think things aren't too bad. My husband is in his PWC, getting around, talking to people etc. They don't get to see what it took to get him there. Seems like a double-life sometimes. People will say what an amazing job I am doing. But I'm really not. They don't hear the screaming when I can't get the hoyer to work. Or see the frustration when he's made his 55th request for something in the past hour. They don't know that it takes a good hour a half to 2 hours to get him up/to the bathroom/showered/dressed and fed. They don't feel the pain that will not go away in my arms from lifting and moving him around every day. They don't know that we work our entire schedule around bathroom visits some days.

Don't get me wrong - we are blessed to have great, loving and caring friends who have stuck by us. But no one sees all the "behind the scenes" stuff that goes on every day.

Hugs, lovely lady! I hope today is a good day.

 

[soonerwife]

You are so right Jrzygrl, no one knows what goes on behind closed doors...

 

[Lkaibel]

It drives me particularly nuts when I am finally sitting and Brian decides he needs stuff. I manage it now I think, usually. I will actually say "okay I am going to sit down now, tell me if you want something first". Notice I say " want" because if he needs something like his glasses to read I don't want him to feel he has to get up, even though he still can. It's easier for me, it conserves his energy.

I just really wanted to contain that "Oh a wine would be nice" within three seconds of me finally sitting down.

Nuts, your husband is heavier care than mine by far and brother living in Hawaii or not, I could not do what I have for my mom in your situation. I know an only child CALS we met at an MND Society gathering who has her mom hooked up with both home care for baths and a housekeeper and meals on wheels and grocery delivery besides. She simply has no more bandwidth and feels terrible about it, but her husband is just about totally disabled now. He has a mobile left hand and can still speak, that's it.

Brian has one more hurdle to clear to be accepted for the AM0025 trial. I am feeling crusty on the whole thing. It's double blind of course. Even if he is finally approved, there is probably less than a 25% chance of him personally benefiting. I tell him and his Dr tells him hey you do drug trials for research, not yourself. This in turn makes him mad about double blind studies. Who knows if he will even get that finally approval. I know I am being super negative, but I have been in this rodeo before and part of me feels the process just let's Brian down again.

Brian did get his physical to get his port for Radicava. We have clinic Friday, I am practically feeling hardened to whatever scary stuff they tell us. I think I am mad. Yes, he is getting worse I want to say and your drug trials and your Radicava you tested on a few thousand Japanese people? Whatever, just whatever. Our Doctor does have a charming way of wanting to make sure we understand we are in a hopeless situation. Maybe he is worried about patients chasing rainbows only to be let down.

Looks like my mom is getting out of the rehab the same day as our clinic, so figuring that out. Figure it out we do. The above is just the stuff rumbling in my little mind while I get it all done.

I want us to live again, just live. Let's have dinner and not talk about any of this let's just be alive today. He says he is sore, tired, weak. I feel helpless and go wash a pile of dishes. We do it again the next day. All this, and I have no clue sometimes how I will live without him. None. I am sure I will. It's just what you do.

 

[soonerwife]

I get it Lenore. I feel the same. Frustrated that as soon as I sit, he calls. Frustrated that this is our (life)? Not what we expected at all.

 

[Narrowminded]

Lenore - add me to the frustrated list. While my Brian can no longer to anything for himself we still have the same battle. I will go in and say, I'm going to sit down and eat my dinner, do you need anything? Nope. 3 bites it, I get a request. It would be so nice to eat a hot meal from beginning to end. I have to admit it's gotten a little better since he can control some things from his speech device, like the TV. However, his thumb is losing strength, so not sure how long we've got with that for operating the switch and right now he refuses to learn the eye gaze. So....

Nope not what we expected from our life either.

Hugs,

sue

 

[Buckhorn]

Great thread Lenore. You have obviously hit a chord that resonates with many of us. I have been "congratulated" many times on my "can do" attitude. I guess I am gratified, but as several here have expressed, almost no one realizes how much work it takes to get from point A to point B ........ what goes on behind the scenes is almost unimaginable to most. My PALS is almost totally dependent upon me now for all aspects of self care. He can chew/swallow and speak, but all aspects of hygiene, self care and mobility are dependent now. I dread shower days (only once or twice per week) because I always feel like I'm screwing it up. When we make plans to meet people outside of our home for dinner we are always late; I can't seem to get a handle on exactly how long it takes to get ready and out of the house ....... That's o.k. I will persevere, as many/most of us have. I don't have time for a pity-party, as life's demands will keep mounting up. We have no children to help out, & no relative close by that is able-bodied, but we do have one absolutely amazing neighbor, without whom's help I would never be able to keep up with our 5 acre property & care of my husband.

 

[Lkaibel]

So tomorrow is Radicava port day. Excited to be "doing something" but of course. It comes right a a time Brian says his arms and hands feel weaker. Can we stop this for a bit, slow the pace? I guess we will see. Same as the AM0035 study he starts shortly. There is a 70% chance in this study he will get the drug. Will it help? Probably a much smaller chance of that, but it always could. I dare to hope a wee bit but don't want to be crushed, or more crushed than we have been so it's an interesting balance.

Odd week. A friend's husband died of ALS a bit ago. I met her a few years before she knew her husband and before Brian and I married. Who would have thought? Is it terrible that I felt terrible for her but also relieved for her? Her husband spent his last year in a nursing home, with only speech left to him. He did not have an FTD Dx but was out of his head often from dealing with repeat UTI's and breathing issues he refused Trilogy or bi-pap for. He said the week before he went that he just cold not live this way any longer, and he had never said that before.

My friend was fortunate between his VA and other work pensions and his savings and her family money, they got to do a lot of nice things together and she spent three full years home with him without money worries. Yet we know that is " lucky" in our sense of the word, here in Planet ALS.

I do feel lucky for Radicava, for the study, for the lift in Brian's mood it's all good. It keeps going though. Sometimes ALS whispers, sometimes it shouts. Tonight I bought Brian a transport wheelchair for those longer jaunts down hallways in hospitals, malls, etc. he still does the walker, but going getting the port tomorrow I'll take him in the chair because of distance and medication. It's a small thing and a huge thing all at once.

I got half of what I wanted to do done today because everything takes so long. Difference is, I forgive myself these days. It's okay.