Partner diagnososed

[pdcraig]

Hi everyone, first posting here.
My partner was diagnosed in September, confirmed in December. So far the progression is slow. Presenting in one leg, he's experiencing some foot drag.
The biggest problem right now and I know this sounds bad but he became an instant invalid after the diagnosis. The doctor told us it was in its earliest stages and presenting in one of its least aggressive forms, as good as the news is going to get. Told him to stay active, continue going to the gym, work. Try and keep things as "normal " as possible.
I can't get him off the couch. He's still not back to work, a couple of part days a week, in bed until noon, 2, last week I got home at 6 and he was just getting up. He's completely convinced himself he can't do anything and he won't try.
I've been reading through the posts and some of the stories, still riding a bicycle, are so positive. My experience not so much. I'm worried and more than a little scared.
His case is genetic, his mother passed away about 10 years ago, so he knows what he's facing, saw her go through it.
He won't go to the support group, or individual counselling, missed his last specialist appointment. Says he's not ready to face it.
Everyone has different coping skills and takes their own time. I'm just worried he's making things harder for himself than it has to be.
I get to be the mean one, making him do things for himself, pushing rather than consoling him.
I have great moral support from both our families but they're not here dealing with it daily.
Any suggestions on how to help?
I'm worried, scared and getting more and more frustrated. Trying to be patient and understanding but some days....
Thanks for letting me rant.

 

[ottawa girl]

Hello and welcome.

I feel your pain, and your frustration. Especially because you can't fix your partner. I feel your PALS pain. It's palpable in your words.

The first six weeks after my initial diagnosis are a haze of tears, sleepless nights, crazy thoughts, confusion, despair, denial, and guilt. I was so sad and felt incredibly guilty for having allowed this beast into my home, my family and my marriage. Reasonable thoughts? No. But it's truly how I felt. ALS was NOT on our bucket list. I feared sucking the life out of my husband, yet I clung to him for dear life. I thought my life had stopped. In a way, it did. It felt surreal. So, I hid out as best I could. I cried and wailed when my husband went to work. Retreated to my bed, rising only in time to shower and dress before he returned from work. This went on for weeks. I know now, it was grief. Plain and simple. I was paralyzed by fear and I seriously believed my demise was imminent. So that's my story... I cannot even begin to think how scary it is for someone whose life has already been touched by this catastrophic illness, as your partner has experienced with the passing of his Mom. That's a double whammy!

When my husband (aka superman) told me this new reality was simply a lifestyle change, I started to believe him and to trust that. Life beckoned. He tells me everyday that he's in for the long haul no matter what, and he will be there always. He will safeguard my dignity. Sometimes he tells me this several times a day. The more I believe, the stronger I become. The stronger we become. Next thing you know, we're laughing.

I also was not keen on attending support groups (still haven't, but may do) and I delayed going to the ALS clinic for several months. I feared seeing people worse off. That thought really creeped me out. When the clinic called me and the nurse assured me this would not happen was the day I booked an appointment. It was difficult, but oh so worth it. I am able to face my future safe in the knowledge that people care and will be there too.

What can you do at this point? Reassure him. Often. Reassure him again. You clearly cannot make him do anything, but you can ask him to love you, as you love him. You can get help for yourself so you don't get pulled under the bus too and be better able to direct traffic instead.

Grieving is different for everyone. Perhaps he'd be willing to see his GP for a chat about his depression. I did and the meds she gave me are working to gently elevate my mood and increase my energy. ALS does cause fatigue, but so does grief and so does guilt. I also sought counselling from my priest. That helped enormously. Praying helps me. Big time. The meditative quality of praying is calming and soothing. Hugs are good too. Even if he doesn't feel huggable. Keep trying. Ask him for hugs too.

Should you be asking him to go out on a bike ride? No! But you can discuss your day, invite friends over, plan short excursions to the grocery store or Starbucks; even if he doesn't initially engage, he will eventually because generally, our will to live is stronger than our will to die. The guy you fell in love with, is still in there. Really. You can coax him out with kindness. A home visit by your local ALS society rep. Can also help.

He will discover, in his own time, that his death is not imminent. When he rejoins life, in measured steps, you will have him back. Not the same guy. But you're not the same person anymore either. Next thing you know, you will be laughing again too.

I believe caregivers, our mates, have it worse. They want to fix us. They do the heavy lifting.

Thank goodness for this place!

 

[SMP51]

Craig
deep breaths and tons of patients.
My husband, though he didn't stop living/working after diagnosis, had me waiting on him hand and foot. He felt it was just so much easier for me to do or go get for him even though he still could. I was ready to change my name I was so tired of hearing it called for every little hand me this or that. He refused to travel long before he couldn't because it was so much more difficult. I found my self frustrated, scared and angry at losing our life before we had to.
What I didn't understand was the exhaustion he has daily and I surely didn't understand the emotional battle of dealing with this disease from his side of it.
Eventually I had to come to terms with the fact that ALS is his monster to wrestle, I am just along as back up support, so how he deals with it I can not control. I can only control how I am going to support his battle.
When he could not longer lift his leg over the tub side, the adjustment he felt would work was (OMG!) a small step stool! My support of the battle was to gut the bathroom and make the whole thing wheelchair accessable. My argument to his denial of the situation was even if he didn't get any worse neither of us was going to get any younger.
Your Partner having lost a parent to ALS has reality of the future slapping him in the face. My husband survives by living in the moment, he refuses to dwell on what is to come and has said he could easily find himself in a very bad way if he did. He does not go to support groups or do the group phone calls our local ALS chapter does. He has made contact and there is comfort in the fact that they know we are here. but he does not participate, to each his own and it may not be your partners thing either.
But you do need to bring him back into today somehow, it may just be he needs the time as he has not been long diagnosed. And you know, all the frustration and anger I had back then is a moot point now, the energy would have been better spent elsewhere.
My husband is content to sit in the front room in his comfy lift chair all day everyday, has no desire to go anywhere. Says he likes our home and is comfortable there. Anyplace we were to go he would be in his WC and would only be comfortable for a short while. Going places is a huge effort, so whether it is worth going is strongly evaluated.

I totally get the more and more frustrated! I don't know how you and your partner interact but I can defuse a lot of tension with playful picking or humor. Last week my British born husband was dubbed Sir Nagsalot. and a while back when he was being difficult during a shower I told him if he didn't behave I wasn't going to bath him any more I was going to hire a nurse and it wasn't going to be a cute little nurse like a friend of mine is, but I was going to get a big burly hairy male nurse to come bath him.
If you can figure out a way to still laugh with one another there is a lot of things you can get through together.

and more deep breaths....

 

[Nikki J]

Hi Craig
I am so sorry. I identify quie a bit with your partner as I am from a FALs family and I just found out I carry the defective gene but unlike him I don't have symptoms. It is overwhelming though and when you have seen the progression first hand it is beyond terrifying. Is he depressed? How long since diagnosis? It is so hard for you. You want to love and support him and enjoy life while he can do things. He likely is tired from disease but it sounds like this might have a large emotional part. Is he on an antidepressant? Lots of PALS are.
Again I am so sorry for his diagnosis
You sound like an awesome partner

 

[Barbie]

That is a very good post SMP51! and I agree with nikki, he sounds depressed. My husband was depressed in the very beginning too, but he was able to pull himself out of it and go on with his life. (he did go on anti-depressants but it was farther along)

You can't make him behave any better if he will not help himself, but you can take care of yourself. YOU get the help YOU need to deal with the situation whether it is counseling or anti-depressants for you, and keep loving him and encouraging him to live the time he has left.

Good luck!

 

[pdcraig]

Thank you all for the replies
SMP51, your story is so familiar to me. I started out doing everything but am trying to follow the doctor's advice and make him do as much as possible on his own. We still make each other laugh so there's hope we'll figure a way through this.
Nikki, the doctor and the clinician both told him his mood was having a great affect on how he felt. He's taking anti depressants and they have really helped. In the beginning he wouldn't even get out of bed.
Barbie, I know what your saying in my head it just makes my heart ache to see him just sitting there day after day because the time will come when that will be all he can do.
Just being able to talk about it with people who really know what I'm talking about makes all the difference. Thanks again for the support.

 

[ottawa girl]

Pd -

I spent a long time sending you a message last night. It disappeared. I re wrote it, and it was sent to moderation. I hope it pops up one day soon.

You are a caring person. Dig deep. You PALS is still " in there", amidst the grief and fear.

 

[AnaMaria]

I live not far from you, but in Seattle now. Maybe we can meet when I return. It is so very hard: my mother requires so much help, physically and emotionally. You can give and give, but do recharge. I saw my girlfriends from high school last weekend (I am 50), and came back a new person. Its ok to find laughter while reaching out to others. I wish I lived closer to my parents, as I will need to go back to ON and I don't want to leave mom.
Try to find a smile where you can - it will be easier to share with your partner if you have one. I know the pain. I send you love. I send you strength.

 

[SMP51]

Thank you all for the replies
SMP51, your story is so familiar to me. I started out doing everything but am trying to follow the doctor's advice and make him do as much as possible on his own. We still make each other laugh so there's hope we'll figure a way through this.
Nikki, the doctor and the clinician both told him his mood was having a great affect on how he felt. He's taking anti depressants and they have really helped. In the beginning he wouldn't even get out of bed.
Barbie, I know what your saying in my head it just makes my heart ache to see him just sitting there day after day because the time will come when that will be all he can do.
Just being able to talk about it with people who really know what I'm talking about makes all the difference. Thanks again for the support.

yes, it is very hard to see them not wanting to go and do when we think they still can and therefor they should be going as much as they can. It aches not to see them battle ....but that is our perception, because they are battling!
We(me and mine) were so very busy with our busy active social lives and now....well, you know.
part of me thought he was quitting, but that was my perception.....specially in the beginning when they seem the same as ever besides that un easy gait, or that they don't have the strength in the hand or their tongue gets a little tied. But I have come to believe and understand what a huge struggle it is from the beginning. Looking back, my Steve was exhausted long before seeking out a doctor.
So what I do now is look at it as a change in our life, Life goes on and now it is just different then it was. Myself, I cant sit still, never have, so I have a lot going on and all of it in his line of sight. Because "I" would be bored to tears sitting at home I have filled the home with activity as best I can. My way of supporting his battle.
We have always had a dog and a cat, the small dog spends the day in his lap and the cat sleeps at his side at night. I have added 2 large beautiful planted fish tanks to the mix (my husband taught and ran a scuba shop most of his adult life). We have a large picture window that looks up the street and the garden in front of it has bird feeders, humming bird feeders and the garden is planted with things that attract butterflies. I put a bee hive out there last week and they fight the hummers for the sugar water. Steve will be able to watch me and my girlfriend harvest honey from his chair. Speaking of birds, 3 weeks ago the cat brought a zebra fench in the house so I got it a friend...randy little monsters are rather entertaining.
Our house has an open door policy and friends know they must come to us now, and are welcome anytime....it has been interesting who comes, and who doesnt! Hot tea, coffee(with or with out irish whiskey) or a glass of wine generally available. and half the time I am sitting on the floor building something outta clay(anyone need a bowl? LOL)
We were not TV watchers but now there are seasonal shows we make a huge deal out of watching from Downton Abby, alligators and gold to Zombies! hahaha
To help him help me and himself, I keep things he needs within his reach, be it meds, a glass for water, or the things to make lunch. one of those long grabber things are great.
of course about the time things are running smoothly they change, adjustments are always being made.

stay strong!

 

[pdcraig]

ottawagirl, thank you. My partner and I haven't talked a lot about this yet. He just isn't ready and I can see the fear whenever the topic comes up. Reading what you shared gives me hope we will be able to find our way too.
SMP51, again you've helped me see ways to cope. We're big fans of Downton and zombies too.
AnaMaria. if you're ever in the GTA meeting would be great. We can still smile and laugh so...
thanks again to all of you. The insight and support mean so much.

 

[SMP51]

and another thought Craig, get the Wills , finances, disability and power of attorny crap sorted if you two have not already done so, I know it seems a grim task but get it behind you so you can concentrate on living.

 

[pdcraig]

SMP51, we've talked about it but haven't decided on everything yet. Our feeling was the same, got it done and then we don't have to think about it. He had his first bad fall today, scared the crap out of me. I think I may have reacted worse than him. It really shook me.

 

[SMP51]

has he gotten braces to help that drop foot?
falls are scary, and can be bad. a cane or walker....depending on the need helps as well
safety before pride

 

[pdcraig]

Hi SMP51, no braces but he does have a cane. Of course it was at his sister's place because he forgot it. We're back at the clinic on the 19th so we'll see what the specialist has to say about things. Pride really is playing a factor. Not in asking me for help, but in seeing our friends and my family. can't wait for the warmer weather and no snow and ice to deal with.

 

[SMP51]

the problem I found was him not wanting to use the what is needed to make things easier for him. Each change in an aide is an admission of progress of the disease, a hard pill to swallow.
but after a change the reality that it makes life not such a struggle, and therefor more normal, we both are always glad it is done.
He struggled to keep walking, although his legs were still strong his feet were dropping so he was tripping himself and had to swing his feet out and around as he walked....not good! Relenting and getting the braces made his gait back then normal again.

We spent the kids inheritance today and purchased a wheelchair van. I had been pushing for one for a while now. He only leaves the house for doctor appointments, transferring in and out of the car is exhausting, but because he can still do it he didn't want a WCA van, thus we go no where. Well, God showered me with blessings on Monday in the form of heavy rain showers.... it was Doctor apt day! Ever try putting together a wheelchair while holding an umbrella? ROLF!
I told him I didn't care if we didn't need a van yet, I WANTED one! And I got it this afternoon. Then we went to dinner with my brother and his family and the evening out was EASY! and then he ran an errand with me!