Al woke up teary eyed right a way this morning. I am sure it is the discussion we had last night. He doesn’t understand that no matter which way I move his bed around he still wants to lay in the direction of the wall.
The room is not accessible to move his TV in any area I wish. If it didn’t cost $75.00 I would have the pros come out and put extra wire in, but, I can’t. I had a talk with Al about when the time comes and he is spending more time in bed. I explained that he will have to adjust to how the bed is placed and try really hard to sleep facing the TV so he can watch it whether awake or not.
He is really noticeable with his heavy breathing. I was shaving him this morning and I could hear the breathing. I hate noticing these changes so easily. The nurse came later and said his fingers were dusky. There was that term again. I didn’t ask but I do want to know what it means.
It is amazing how the mind works. Although I am ready to accept Al leaving this earth, I am not counting down the days. I think Al is though. Just like the new baby I told you about last night. He already said he won’t be here for Christmas.
Do you know how much I want to get the Christmas Tree out this weekend and put it up glorified with all decorations? Why? Because I don’t want him to miss this year with me. What if he is right and he isn’t here. I guess it is super silly to put a tree up in October. Maybe I will wait til the end of the month.
Someone else in this house isn’t happy either. Rhino, our cat. He hasn’t left Al’s room much these past few days. When I go into change Al or do anything Rhino throws a fit. He howls a little and meows loud as if telling me to get out, don’t come in here, I am the caregiver now.
Last night when I put Al to bed, Rhino refused to move off the bed. Usually he meows at me and I tell him to move. He meow argues with me but finally gives in. Last night he wouldn’t budge. When I got Al in bed I had to actually scoot Rhino over and the two of them went to sleep head to head. The next time I saw Rhino it was morning.
Today Al didn’t go to Day Program so Rhino was in there and still is. When Al took his afternoon nap I once again had to try to move Rhino off the bed, but it was a no go. I decided to take a photo of Al and Rhino. I have been replaced by a new caregiver. I think Al and Rhino know much more than they are letting on. I think they know exactly what is happening.
Go for it Terry put up the Christmas tree!! Who cares if it’s early if it makes you both happy!
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you think I should, really?
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For sure! Why not?!
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I will, I will try to do it this weekend
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Have fun!!
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Yes!! You really should. Don’t wait. There are no rules when it comes to the life that MSA has dealt us all. Go for it.
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ok I will do it!!!! thanks for the gentle push my dear friend!!! hugs
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I’m so glad. Enjoy it.
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mia mamma è ammalata da 14 anni di MSA e da 9 Ă© allettata…anche lei per anni parlava e diceva che sarebbe stato l’ultimo natale ma nn è stato così..fatevi coraggio questa malattia è imprevedibile, la mamma nn parla nn mangia ha la peg dal 2005 e anche la tracheotomia….. sopravvive ma è felice di esserci ancora con noi…e noi siamo felici di questo auguri di cuore….
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I hope they find a cure for patients. I know it won’t be in time for my brother, but for others I pray. thank you so much for your comment my friend
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sure… Christmas early… its about worship and happiness and celebrating a miracle… exactly what you need.
– Eric
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it does seem the right thing to do in my heart. Thanks Eric
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You should put up the Christmas tree and have an early holiday with Al.
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I have decided to do it since all of you think I should. Thanks so much!
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I say put up a tree. Christmas can be when ever you want.
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I am going to do it. All of you are for it!!!
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goo for it if ihave learned anything living with MSA since 2008 its theere are no rules for victems ofthis horible condition ENJOY EVRY MOMEN T TO THE MAX WHEN EVER HOW EVER YOU CAN………….
NEVER GIVE UP
steven (msa warrior)
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thank you so much Steven. I knew it wasn’t normal to put the tree up but I just want to do as much as possible to not let him miss Christmas. Thank you for being so supportive!!! big hugs
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My Sister is a playwright and every year she produces a dinner theater for her church. Because of the amount of work involved she starts in the summer. Her kids actually have a betting pool on how soon she starts humming Christmas songs. When we say Christmas in July – we mean it. I say put up the display, especially if he enjoys it. I know I am hyper aware of each passing special moment, because we may not have it again – hang in there sweetie so glad Al has you.
Susan Pasini
another MSA Warrior
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I would love to correspond with the MSA warriors out there. My husband was diagnoses 3 1/12 years ago. There are so few who know what the spouses/caregivers are going through.
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oops…I meant diagnosed. It’s late!
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thank you Susan. I agree with Lindi. I am the sole caregiver and get so emotionally and physically tired. My brother is not light weight. I have been trying for three months to find someone to come in and help in the evenings to spend quality time with my brother and help me to put him to bed. but alas, I have had zero offers. It is so upsetting. Each night I go to bed exhausted
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How wonderful of Rhino, to be with Al, he does love him and it is good for both and really sweet! I agree with everyone else, put that Christmas tree up! Show Al he does not have to miss Christmas !
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I have decided to put it up this weekend. I am not going to try to guess the future
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Good, I am glad!
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Terry, I think you should put up the tree. I’m sure Al will love it, and you might regret it if you don’t.
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I have done nothing but try to guess what tomorrow will bring. It is silly, I can not see tomorrow. I am putting the tree up this weekend
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No point in guessing; just go with the flow. You’re doing the right thing.
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It i s at times like this it is wonderful to know that the Lord is in control of all things. Each one of our days are numbered by Him. NOTHING will take place without His allowance. We can always rest in Him knowing He knows what is best and will bring the best to pass every time. My prayers continue for you both.
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thank goodness God is in control because I am not each day! thank you for prayers
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Get the tree out Terry.
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I am this weekend hopefullyl
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Good 🙂
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Well, I don’t even celebrate Christmas and say go for it like everyone else. Why not? I’m fascinated by Rhino, Terry. My cat often senses when I’m worse off or an emotional wreck (that’s easy!) and I think they have some strange intuition. Maybe it’s just that Rhino is helping you out and being the companion for Al that you need, but can’t find. Or, it could mean something else. I know a blogger in Israel who is a real cat person and he seems to be like a cat whisperer of sorts. I’ll have to ask him what he thinks of this one.
Also, if you were referring to a cable cord, I know you can buy longer ones and there’s a part you can buy that connects it to the existing one (or so I think). Try Radio Shack if you have one. Just note the size of the cable which is written on the side of it and I’d take a photo of the part where it screws into the TV, as those can vary. If you have to strip the wire and all that, then forget it unless you just love DIY projects. I don’t know how it was done in a former rental, but I’m sure the super long cable had a connector in there and no one in this city would have the money to pay the cable company to do it. Then, you have to tape it to the baseboards so Al doesn’t trip over it! Hope that will work!
Hugs! A xo-
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I didn’t get a chance to go to Walmart today, hopefully next week. I am going to put the tree up
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🙂
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Do Christmas, dress up for Halloween, do it all.
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what a great idea!!! I will, thanks and hugs!
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Knowing how exhausting and labour intensive caring can be how about a compromise. Tinsel and Christmas music/movies and maybe the nativity if that is part of your celebration but spending the time with him and not buried in a box or basement….. I just lost my friend to MSA and in her last hours I was doing busy work and would take it back… fortunately I realized and stopped in time and focused on her… prayers and blessings to you.
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I am sorry for your loss Janet. This disease is just terrible. I am going to start decorating this weekend if my brother remains good
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Terry I would ask about the dusky fingers. Has anyone mentioned a palliative stage and what is involved. Thank you for your sympathy it was only about a month ago… so it is still fresh with me. She went gently after connecting with friends and family. Take care.
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Al used to be on Pallative Care and now he is with Hospice.
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Hi erry, I think you should put up the tree and have an early Christmas, why not. And if Al is still with us for Christmas then why you will have 2 Christmases. How cool is that!!!
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that is pretty awesome!!!! I can deal with this, two Christmases!!!
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Hi Terry, I agree –you should put up the tree. Christmas is about traditions, family, love, the ties that bind, and God. Your brother is blessed to have a caring, loving brother such as you. Don’t hold back; there are no conventions when a loved one has limited energy & life left! Take pictures; sing out loud, reminisce, and enjoy this time together. Best Wishes, you are his strength!
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I got the tree up tonight. He liked it I think but he cried
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