What can I say about the person who gives up their career and life to take care of me at the end of mine? Plenty! Is it all sunshine and roses? Of course not. Part of it is due to our own personalities and part of it is because of the difficulties associated with ALS. We don’t give up, but we occasionally want to strangle each other. So not much has changed in our relationship.
I know that every day this disease tugs at his heart and he has his own breakdown. I usually have my own non-PBA breakdowns at night lying in bed where I oftentimes work on this blog. This is our quiet time. I am supposed to go to sleep while hubby and caregiver retreats to the mancave for a cigar and to chill.
Our lives have taken a role reversal of sorts. I no longer have any chores. Meanwhile hubby has taken over as the laundress, a nickname he gave me because he would complain that I spent all my free time doing laundry. He no longer enjoys cooking, one of his passions, because he says it’s not fun to cook for one. And believe me, for an Italian that is an impossibility anyway. It used to be my job to clean up after dinner because I lost all cooking privileges the day I said, “I do.”
I believe that most of our disagreements or difficulties these days are due to my inability to speak. I still try to speak in this non-voice of mine which, I admit, is stupid on my part. It’s not easy to give up on one of those five senses you have had forever. And it’s really stupid for me to try to speak to my hubby now considering that he has had hearing loss since he was 14. My husband has told me that he would like to hear my natural voice. I spent almost two months on voice banking in order to have a synthesized voice that would sound like mine. Hubby cannot understand my voice on the Tobii (my speech device). With some tweaking it does, but clips off at the ends of some words. It sounded better on my MacBook which I had to give up. So I use a built-in voice that he can understand but complains is condescending. Argh! What am I supposed to do?
I am now on hospice and my husband is on an unpaid leave of absence from work. It’s almost as if we retired, except it’s a lot less fun for the both of us. We recently lost an aide so it means there is a lot more for him to do. We are working with hospice to get a regular routine going. I don’t want to be in bed all day waiting for a shower or bed bath. I haven’t become bedridden yet. I will die when my time comes. Until then, I’d prefer to enjoy the time I have left. But I digress.
My caregiver’s day begins earlier than mine. He gets up earlier to shower and eat breakfast. He tries to get a few moments for himself before I rock his world. The loss of one of our regular aides means everything is his responsibility that day. Our current nursing agency is having a difficult time finding a replacement. Every one wants or requires training for a job my husband was never trained to do. He laughs and tells everyone that I call him my untrained professional. .
After my feeding tube was put in, the surgeon gave my husband almost two whole minutes of training on how to use it. The aides cannot feed me because they are not trained. I use a trilogy machine when I sleep. I wear a mask that covers my nose and mouth. I do not have the ability to remove the mask. The aides are not permitted to do it. So my untrained professional does it before they arrive. I also have a cough assist and a suction machine that could save my life if I was choking. Again, the aides cannot use them. I need my untrained professional for that. Don’t get me wrong, I can get aides qualified to do these things, it just costs more. It is almost as if the government, state, local, or maybe even federal, prefers an able-bodied person to give up their career, income, and benefits to become an ALS caregiver. It’s either that or spend your life’s savings on a disease no one can treat let alone cure. And pray that you saved enough or have great medical insurance.
Sometime before or after hubby’s shower and breakfast, I get my breakfast in bed. Then I wait in bed and fall back asleep until it is time for my meds. We wait at least 15 minutes before attempting to get ready for the day. My husband uses a Hoyer lift to get me up and onto my shower chair. It sometimes takes a few attempts to be properly situated in the chair. I have my teeth brushed in the shower. It’s less messy that way. It kills me that I cannot brush my own teeth. The shower can be routine or full of tears; mine, in case you didn’t figure that out.
Drying off is always an adventure. I feel every piece of hair that falls on my skin and want it off. Hubby can’t always see them and that’s another annoyance for me because I know I will feel them all day long. Hubby likes to say, “But it’s your hair so what difference does it make?”. The difference is that it feels like bugs crawling on me. Another gift from ALS.
We use the Hoyer from the shower chair to bed where, if I am lucky, some range of motion exercises will be performed. Otherwise it’s powder, lotions, eyedrops, etc. Then it’s time to get dressed. What works best for both of us these days are skirts. I buy skirts with elastic waistbands and they are easy to put on and take off over my head. About two to two and a half hours later we are both ready for our day and hopefully are not at each other’s throats. Sometimes we are exhausted by this time. Many days are spent at home just hanging around.
Recently I told my husband that instead of taking a mini vacation, I would rather have an aide to help both of us. I have tried forever to get a family vacation planned. There has always been a reneger or a reason why it couldn’t happen. Now ALS has assured it can never happen. It’s okay family, (the family who accepts me just the way I am because your son loves me), I love you anyway.
We are searching for an aide because it will bring back more of my husband and hopefully lessen his caregiver duties. We will continue to make memories here close to home. Love your ALS caregiver. Their lives are a mixture of sorrow and love, their love for you.
i love you, Joseph.
This is a blog about my ALS journey. The journey is different for every person diagnosed with ALS. The rants are mine alone. 
Some of you reading this post may have a feeding tube, but I’m betting that most of you do not. Three weeks ago I went for surgery to have a G-tube inserted. It required an endoscope down my throat to locate my stomach. I thought that would be the worst of it. Turns out that was the painless part.
Tomorrow will be another new beginning in my ALS journey. I will be getting a feeding tube. The PEG procedure is only supposed to last 15 minutes. I’ve heard from people who have them and it doesn’t seem to be a big deal. I think I am looking forward to it in some ways.
ALS and ME 