Caring for steve

Hi, everyone. Wow, a blog!! Never thought I would be a blogger, but I am going to try it out. Put my feelings, fears, and frustrations down in print.

My husband Steve has ALS/MND he was diagnosed in January 2015. Steve just had a tracheostomy and feeding tube fitted in May 2017. Now that has certainly changed a lot of things. Some for the better (his breathing) and much more for the worst. See I feel terrible writing that, but I have to be honest or there is no point writing anything.

I am overwhelmed with the amount of care I have to give, I mean I have not finished a cup of coffee or a meal in one sitting for 5 months. I have not slept through the night in 5 months, haven't really been out, had a chance to have my hair done, eyebrows waxed, nails done. Get to a Dr's appointment, that's mine and not Steves. Everyone says " You must look after yourself or you are no use to Steve" really? well, shouldn't we all be doing that anyway? and it is great advice, but it's not a reality it's just words people say because they think they should say something, like "Stay Strong" "Be Strong". Please do not say those words to me. You have no idea how strong I am just to get out of bed in the morning, to repeat the care I just did for 19 hours the day before, and the day before that........

Some reading this may thing stop feeling sorry for yourself, and you are right I should, but I feel like I have lost everything, My husband, my best friend, my lover, my partner, my co-parent, my support system, and we worked together so I have even lost my co-worker too. My job has changed, I work from home for 6 months of the year now, and the rest of the year we are at the camp. I miss going into the office, seeing other colleagues, I miss been involved in so much stuff. Out of sight out of mind isn't that what they say? I am excluded from things now, events, social gatherings, people just forget about us, or we have declined that often people stop asking us.

Don't get me wrong it isn't all bad, it's just hard, every day is hard. We still laugh, we still enjoy movies, series on Netflix or Amazon. I have always enjoyed TV, Steve wasn't a big fan, but we watch things together now. Yesterday was a great Day, it felt kind of normal, but last night I was woken by Steve 5 times during the night for suction or cough assist, or to move his feet, as they were aching. I wanted to scream at him " your feet are aching, oh I'm sorry, my back is killing me from lifting you 6-10 times a day, my knees are killing me from the strain, I am exhausted from lack of sleep, but yes, please wake me up because your feet are aching". But I don't do that I bottle it up, I bite my tongue so I don't upset him.

I am out of eggs and milk at the minute, I cant leave to pop to the store. it's a one-hour process to get him up and downstairs into his power chair, then another 30 minutes getting him in the car, putting all the restraints and safety belts on him, clamping the wheels to the floor, all this just to get milk, can you imagine that?? Can you?? Then to do it all again, once I get back. So we don't, I have to rely on friends to come over and drop things off. We live rurally, no supermarket delivers. Quite frankly I am sick of asking for help. I am a fit healthy 47-year-old woman, who has spent the last 23 years bringing up a family and now this, taking care of Steve. Yes I feel robbed, robbed of my future with Steve, all the things we planned to do, the travel, the time to enjoy our wonderful job, to take up golf, go out for dinner, go to the movies, go for drinks with friends, visit the winery at weekend, instead of the last 18 years of every weekend driving the kids to soccer, watching them play rushing around with school uniforms, homework. Time to breath really, time for us.

We just had lunch together and we talked about work, and how busy I will be this weekend with tours, and also prepping the house for winter, stacking the wood, fall clean up. He said, "well who is going to look after me"?? Me Steve, I am going to look after you and do all the things that need to be done. Why are you so moody? Why are you not patient with me? Why do you look so sad all the time? Snap out of it Pauline, shake yourself down. That's what he said to me, well mouthed as we now have to lip read Steve. he is right, I do need to snap out of it at times, as I know it has to be so frustrating for him, from being super active to locked in, and not been able to do a single thing for himself. It's not steves fault, none of this is, its ALS and the shit show that comes with it.

When Steve chose to have the Tracheostomy after bad doctors visit in April, we talked about it, we were told how hard it was going to be financial, emotionally and physically to all members of the family. It was death or surgery, so it was a no-brainer really. but it is hard, it is harder then I ever imagined. We have a strong marriage and a strong relationship, but it has tested us right to the bare bones, stripped us of every fiber at times. I could never understand how family walked away from their loved ones when times get tough, now I can understand, I would never do it, as I love him too much. I love him with all my heart.

More time, that's what he wanted more time, to be with our sons, his nephews, his nieces, his family, my family, our family. The big question is at what point does the quality of life take over time??

If you are reading this please do not judge me, just writing this has made me feel better, less frustrated, it's taken me 12 hours to write, as I kept stopping to look after Steve. I will care for him every day, do what I need to do to make him the happiest he can be. After reading through this blog, I know I have to get help, take a break, from work and Steve, even if it's just a couple of hours.

Thanks for reading.

P x


Anonymous's picture

I just want to thank you for your brutal honesty and bravery. I can completely relate to your circumstances and trials. I am also walking in your shoes. ALS has ruined our life in more ways than I can count. I hate what has happened to our family. My heart goes out to you as I too feel your pain. No one else knows how awful it is. I'm tired of being "strong." I have nothing left to give because ALS has robbed us of everything we've ever known.

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