As you know from my post this morning today has not been one of Al’s good days. Moving to the noon hour I met the Hospice nurse at Al’s Day Program and we both went to see Al. He was no better. I would say he was worse because he was crying.
The nurse tried to talk to him but he could not be understood. His blood pressure was on the high side but this was attributed to his being so emotional.
He was on a high pain level and had already been given his pain medication. The nurse gave it to him again and an anxiety pill. I hope it worked because when she and I left he was still not good.
I tried to get him to stay home but he didn’t want to. The nurse told me it was time to start speaking for him. The Hospice doctor had previously stated that Al would go down faster if he remained going to the Day Program and Al was explained this.
He wants to socialize so bad he is willing to risk his life; but there is a part of me that wonders if he really understands what he is doing to himself being mentally challenged.
The nurse saw me holding back with my answer. I am sorry it is so hard to take a way from him what he wants so bad. This is all that he has left; his Day Program; at least in his eyes.
I know that Al has bad and good days, and I see the bad days slipping in more and more. The nurse told me Al was about bed-bound ready. This threw me back. Am I that naive? Do I not want to recognize he is so ill? Maybe I carry more hope than I should.
To take a way from him made me start to cry. The nurse took over which I guess was a good thing. Starting next Monday, Wednesday and Fridays Al will not be picked up until 10:40 am instead of 8:45 because of a new shower gal. So what the nurse did was decided for him to start staying home Tuesdays and Thursdays all together.
I think from what she said she is going to have the gentleman who is the Social Service worker with Hospice tell Al that he needs to cut his days down. She thinks him hearing the news from a guy will go over better.
I wish I was a robot, no heart, no feelings, no nothing. There are live people walking around like that but I am not one of them. To me, this is one more step towards Al’s end of life. I admit his body can’t take it. The bus ride, pretty much being awake all day, but the flip side is Al’s livelihood, what’s left, bed and TV and the rotten M.S.A.
and a little bit of Day Program.
Who I am 
This is so sad, Terry. No words, just a big Hug.
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thanks my dear friend, I always feel better when I get to speak to you
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I’m glad you have a heart.
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I guess I am not part of the Wizard of Oz team then………………..
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hahaha- oh well. I’m closer to Kansas- maybe I am. 😉
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LOL
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It is an impossible situation to be in my dear and I’m aching that you have had to make these hard choices. My only hope is that it increases Al’s comfort a bit more and in that way assuages your understandable ambivalence. Hugs and prayers, m
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The nice thing about Hospice is they are all about comfort. They just believe that Al’s body can’t take much more. They don’t want him in constant pain although he loves the Day Program.
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I know what I would have done in your shoes, and you did it. If only there was something that could be done. You know we are all here for you Terry
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I count on your friendship, more than you can imagine. Your support is my life line
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I’m glad I can help, Terry
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🙂
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I visited and listened! God Bless.
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thank you so much my friend!
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Glad you are not a robot, you couldn’t have and return our hugs. We are all with you Terry in your pain, but only you are so close to him. At least he can still do some day programmes as he likes that, it is good to do what he likes as he needs still stimulation. Hang in there Terry! Huge super dooper hug to a soft you, not a robot!
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I was so surprised when I spoke to Al about it tonight at supper. Forget the man thing I say, Al agreed with me. He must be facing what is happening also
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I think it is a great decision…Al, probably will see how better he is on fewer days and enjoy them more…
I like that Hospice can take away the hard decisions from you too…
So needed at this time…
Yes…we are a little naive when it comes to our loved ones…We sometimes just want to blank it out…if it’s too hard…
Best to you Terry…
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I think that must be what I do, blank everything!!! LOL
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I simply want to say terry that what good is being alive if one cannot “live” life? Why would one want to stay alive longer only to be bed bound and depressed in mind and spirit? Ask yourself this question. I have. You know why? Because I am dying sweetness, and guess what? So are you, and so is Al and so is all humanity. 100% mortality rate ~ guaranteed. So the question for myself was if I had to make a choice between living longer which meant also suffering longer or moving on to my next address having truly lived as fully as possible up until that day, I would choose the latter. It sounds like Al’s outings are good for his heart and soul and not so good, actually truly detrimental for his body. I believe in you and the choices you will have to help make with Al for Al. He is your family, not the nurses. If you can accept that he can have a happier shorter life, perhaps maybe you can help him accomplish that, if that is his will.
I love you precious human, because you exist, because you aren’t a robot, because you have been given this gift that can feel like a curse or a burden, which is the care of Al. I know that it is probably the most difficult responsibility you have but that being said, know that the strength to do what your assignments and life purposes demand ~ is already within you. The balance of strength and weakness in you and each of us is already in us. It manifests differently for Al than for you, but maybe his strength is that he is willing to change his address to another space sooner for the chance to love and live more deeply in this current space of his.
I’m so glad you are not a robot because you are such a sweet, kind and compassionate you. Indeed you are the BRAVE.
Xo ~ Sheri
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Thank you so much Sheri. Your comment just makes me feel safe and secure. I did mention the dropping of two days tonight at supper. To my shock he was in agreement. He said he is just getting too tired. That was easier than I thought but it saddens me because even Al is realizing his body is getting so tired. Big hugs my friend. You made very good points and I agree with you all the way, but with Al in agreement this is the move we need to make now I think
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So awesome, see it is all there in the both of you.
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it worked out, just like you knew it would!!!
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maybe this will work out best, Terri. Maybe 5 days a week is just too much for him, and he’ll be able to handle this better.
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that is what I am hoping for too. You make a very good point my friend
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You would probably not be very likable as a robot, so I’m glad you’re not. The people who are like robots have a down side to being that way, too. They can’t feel grief or pain, but they also can’t feel love. I would hate to have missed out on the experience of love, joy, exhilaration, etc. Having to experience some amount of grief is worth it. You will never regret loving Al, something you would have missed otherwise. Blessings to you, Terry, and prayers for you and Al.
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you are right. there will come a day I will look back and smile at all we went through
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Praise God you are not a robot, Terry. Otherwise, who would love Al like you do? And who would continue to fight for him to have as much joy as possible in his last days? And if you were a robot, who would care about Al’s emotions, which play an enormous part in his health? Terry, if you were a robot, who would wash him with gentleness and love when he has an accident? If you were a robot, who would Al be able to vent to when he is upset? And though it seems terrible at the time, when Al vents on you, it is because he trusts you to love him, and to care for him, no matter what. So, rejoice in the fact that you are human, and that God has appointed to you care for Al, because no one else could ever care for him like you do!
God bless you, beloved friend. I am praying for you and Al.
Love,
Cheryl
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the way you say it, makes me think twice. The way I wrote it was to protect my heart from hurting. Big, giant hugs to you my friend!!!!! thank you
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I am thankful that you are there for Al and not a robot. I am praying for you.
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thank you Sparrow, you know,, robots can’t feel pain
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Glad you’re not a robot!
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I hate how my heart hurts for those in pain. it hurts deep, just like yours does. We are alike in some ways you know. We both have so many feelings
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I am so sorry you are going through this pain. this is a stage we all dread, we know it is coming but when it gets here we are not ready. i think of al and try to imagine how he is processing what is happening. at each stage i try to just accept this is another step along the path. it is not so easy for my husband. on my bad days he worries, i would guess much the same as you do. i would say the nurse is right that you may have to start speaking for him. he wants to stay awake and be with people, the reality is it may be time to give in to the body and just rest. sending love and wishes for better days.
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it is ironic how you and Al and your husband and I can walk easily through each path as we are all experiencing the same feelings, as the caregiver, husband, brother, wife and sister. Yes, we know it is coming and we love you. We feel helpless and can’t help the selfish feelings of not wanting to be without you. hugs my friend. I care
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Hugs
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HI Len!!! thanks
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