With Jane and Ralph finally here from London, we are ready to celebrate Christmas on New Years Eve. Secretly Dennis and I will also be celebrating our 10th Anniversary. Neither of us believe he will make it to our real anniversary date in May.
Yesterday was a day filled with frustration and anger. Dennis had an appointment for a feeding tube change and I asked Raquel if she would take him by herself. It did not turn out well. They exchanged unkind words and he came home angry and she came back crying. I let her go for the day.
Then Dennis and I joined Jane, Ralph, Hamed and Ashely for lunch at a local Persian/Turkish restaurant and Dennis was still in a mood and I was angry with him for running off Raquel. We made it through lunch, but the drive home was a bit hincky.
A new perspective came to me this morning. I have too many rules that I have put in place to keep Dennis alive longer. He can't have anything with sugar, corn syrup, dairy products, etc - anything that causes phlegm build-up. He can't eat anything after 2 pm, because he just spits it up and makes a mess for me to clean up. He can't eat in the car for the same reason.
All of these rules are in place for his benefit - or are they? I really prefer not having to vacuum out the crap in his throat each night from over indulging on sugary stuff. His doctor did say no more food so he would not choke at night. I hate cleaning the floor every day, every where he has decided to munch on food.
I could give up any kind of food so easily, but Dennis lives for food. Other than me, food is his number one love. Especially anything with sugar. He lives for desert. My sister understands this - she makes sure he always has a pie whenever he comes over.
This morning I understood that I was taking away his life from him. Oh, I was doing everything that I could to lengthen his life, but I wasn't giving him what he really wants - control over his own life.
So after today (so he can eat and talk tomorrow) he can eat and do whatever he wants. If he wants sugar, he can have it. Chips, not a problem. A bag of sugar, a cookie, whatever he wants, whenever he wants it. I will dig the food he cannot swallow out of his mouth. I will pick up the spills and spit from the floor and his chest. And I will not complain.
I did sob and cry and sob some more all day, though. I don't want him to die. But he will, he is dying. And I don't want to fight with him anymore about anything. We just do not have that much time together anymore.
Until later,
Dennis and Ann
7 comments:
Wow, that post just about brought me to tears. My Dad passed away last month from MSA. We denied him many of the things he loved "for his own good." He too had a sweet tooth and we tried to keep around things he could handle despite his swallowing issues. Licorice was a favorite...when that became too difficult he'd have See's candy, but even with that, he couldn't have his favorites...the caramels. He also really missed being able to drink normal, un-thickened liquids. My sister finally found a solution to that with an old favorite of his that had somehow been forgotten for a long time...Slurpees! She would bring him a Slurpee every time she visited and he just loved being able to drink something that seemed like a normal drink.
I know how difficult caring for someone you love who has MSA and the mixed emotions you're probably dealing with. I'd love to say I always did the right thing and treated my dad with the love and respect he deserved, but I know that's not true.
I can identify with so many of your aggravations. I often got upset over things he had absolutely no control over...and yet he always had an unbelievably great attitude despite all that MSA was taking away from him. Whenever you asked him how he was doing, his answer was always the same..."Great!" with the twinkle in his eye as the exclamation point. We will miss him dearly.
I think Jesus used that time to teach me more about Himself and myself. He knows how we feel because He put aside his rights as God and suffered more than we will ever know so that He can truly empathize with each one of us in our own suffering. Oh how I long to be that unselfish! Please know you're all in my thoughts and prayers.
Thank you so very much for your open and honest posts. I mentioned we had had a big disagreement and it was very much over the same thing. I was trying to protect him and discourage him from doing anything that will exert or exhaust him and he told me I was taking away who he was. He likes to build things and we were in the middle of our sunroom renovations when he got just too weak to work and for a year we did nothing. Hi meds for his breathlesness, albuterol, has an effect on him. It gives him the incentive to do things again but the down side is it makes him aggressive and nasty sometimes. After a lot of thought I realized that if it was me with the degenerative disease, I would want to deal with it my way and I have to sit back and allow him the same privilege even if it isn't good for him. So we have started work on the sunroom again. Three days of working a couple of hours a day for him now has him totally exhausted and in a lot of pain and barely able to move but he is so happy he has accomplished something. He is no where as far along the line as your Dennis and I suspect we have a few more years yet as long as his heart doesn't give up on him. I hope you keep your blog up even if you don't post to it after the inevitable as it helps me so very much. God bless you both.
Tom and Heather, I am again in tears. Thank you = there is some relief in tears.
I am sure there are no right answers - just guesses as to what is right at any given moment. And the doctors do not really know what is right - we live with them, they do not.
Tomorrow, and from now on, Dennis will eat and drink as he pleases, without my arguements. I may not like it, but he is in charge from now on. And any of you may call me on it when I become too controlling. However, I am sure Dennis will tell me first.
Oh Ann. I think you're right though, let him enjoy what he can. I hope the extra work isn't too hard on you.
I hope you two have a very happy New Years celebration.
Tracy
Ann, your post brought tears to my eyes. I know you don't want Dennis to die, but you're right about letting him have what he wants right now. Sometimes quality of life is better than quantity.
Hello Ann and Dennis!
I popped in here to see how you were doing..and found all your lovely pictures,too. What a treat! My SIL comes from Brazil..so it is interesting the see alittle more of this wonderful continent.
I think of you daily..and I mean that. You are always near me. I even talk to you sometimes..since I have started talking to myself out loud. I sometimes forget to keep it very low with others around..but I don´t care anymore. I am getting to the "grand old lady" status..so I can do what I want..most of the time.
Hugs to you both..I hope the holidays were ok anyway..despite the ups and downs.
Love/Iva
Oh Annie, this made me cry--for both of you. It's interesting that this struggle is also causing growth and growth is usually brought about by pain.
You are both in my thoughts and prayers.
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