Every evening I call Al at the Hospice House, and every time I hang up I am sad. You ask me why? Because the nurses say he is doing fine.
Tonight I called again and when I heard those same words I blurted out, ” If he is fine there then why isn’t he here? When he is here he cries a lot. He is so sad. Why isn’t he like that there?”
The nurse probably thought I was on crack, asking something like that. It probably sounded like I wanted him to be crying, but of course I don’t.
After I thought about it a quick second, I explained, ” Oh I don’t want him to cry. I am just trying to figure out why he is happy there and not here.”
She started laughing and I could sense her relief that I was not the wicked witch of the west.
She broke it down a little for me and said, ” He does cry here also, but not continuous. He speaks of death here and he says he is afraid to die. I told him that I was afraid to die too, but we all have to do it. Mr. Al, you have to think about the positive and get a way from the negative. Yes, he cries here, plus here he has different aids here at all times. It keeps his mind busy. Also, he doesn’t get out of bed unless he wants to or ask, and he doesn’t ask.”
I listened with intent trying to pick up on anything that may help me here at home with Al, but I wasn’t getting anything to really grab a hold of then she made the comment that put the puzzle pieces together.
She asked me one question, do you have kids?
Why yes I have kids, they are all grown up.
She went on with her explanation.” Do you remember when they went a way or they went to Grandma’s house for a week? Remember when you went back to get them and Grandma always said they were angels? Well this is how Al is too.”
I thought back to my kids when they were little. They would be the best darn kids ever and then suddenly with no warning they were causing me headaches and stressing me out to the max. I couldn’t wait until they went to Grandma’s.
I laughed out loud at my own thoughts and she continued on. ” This is how Al is. He is here. We are strangers, new people to see and get to know. He hasn’t learned how to press our buttons. Yes, even very ill patients can learn how to press the caregiver’s buttons. He is comfortable with you, where as here, he is still on guard of his actions. This is all there is too it. He is better here just like your kids were when they went to other homes.”
It all made sense. I didn’t want to hang up this time and weep because I wasn’t doing something good enough, or worse yet, discover he liked it elsewhere better than home. The fact is he loves me enough to let all his feelings show here at home. I should feel honored I guess but somehow seeing the sad, depressed side doesn’t thrill me. But, it does make me feel better to know that our life here at home is normal and he loves me enough to let his hair hang down and be free to be himself.
A truly valuable lesson. I was a nurse in the day. I am sorry this is happening to all of you. Hugs, Barbara
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thanks Barbara. I can’t say I like anything that is happening, but I understand more and will always remain by his side, God willing
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I’m glad the nurse spoke words of comfort to you and gave you some peace of mind. She seems to be someone who values the patient’s there, and their family. God bless her, your brother, and you Ms. Terry.
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Thank you Tahlitha. They are a very caring Hospice House. I am glad she talked to me also
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My dear, such is the law of life. Al is here to teach you something! Hold steadfast!!
Hugs …
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I have heard of the patient teaching the caregiver. I wander what it is
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That’s a very valuable lesson. So very true. *hugs*
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HI my dear friend. Yes it certainly was a good lesson! hugs!
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What a good nurse, to put your mind at ease like that. It sounds like he is in the right place for him and you.
And thank you soooo much for that last photo 🙂
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Yes, she was one smart nurse. She helped ease my mind, and as far as the last photo, it made my heart do a little dance too!!!!
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😀
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Wow, for someone to spend time on the phone and talk to you about Al, this is so brill’ and you learning from it. The bigger picture so to speak. I think this alone is something special. 😉 take care..
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thanks, it was very nice of them. I think they are all genuine in the Hospice House
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when he is home does he stay in bed? that can make things so much easier when you are sick. the nurse makes some great points. one of the main things to remember is when he is there it isn’t his sister and the other is that he knows they are there to take care of him. with you he may feel like he is putting you through this ordeal and no matter how much you love him or re-assure him he hates to put you through this.
just enjoy the break, he will be home soon enough and you will have lots to talk about.
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You make perfect sense and I wish in some ways Al did stay in bed most of the time. But he loves his day program and refuses to give it up, so no, he gets up and in his wheelchair each morning. Three days a week he goes to his day school. and the days he is home he switches between his recliner and his bed
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i am sure it means alot to him to be out even if it has a price. that is something we don’t want to lose, that last small independence. thankfully he has you to love and support him. it is great that the two of you have this short break but i know he will be happy to come home where he is loved and cared for. sending love and warm hugs to you my dear friend.
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I just learned from Hospice House that Al can no longer feed himself very well. The staff has been feeding him most of his visit there and I am to continue it here at home or his appetite will drop too much
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My prayers continue for you and Al. I’m glad some things are beginning to make more sense for you. The Lord is good.
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thanks Rob, I could not figure out what I was doing wrong that he would seem better there than here, but I do understand now
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My prayers are with you. I know how tough this is, but I hope you find peace with your new normal. I recently lost my Dad and there is a void. As a care giver, I feel guilt along with loss. I just want to be the daughter now, and remember what a great man my Dad was. Easier said than done.
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Yes, it definitely is easier said than done. I can go no less than one day without thinking of my parents who are both in heaven. But time has turned tears more into smiles when I think of them. To realize now that I will lose my brother also is heart wrenching and a little scary as I will be the last one and next in line. hugs my dear friend. I can’t tell you how fast you will heal, I can only tell you my thoughts are with you
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wasn’t that a simple way to answering your question and concerns…Good for this person …who seems to understand perfectly your feelings…
and WOW terry…let your hair hang down!
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yes , she did a good job teaching me, and that hunk, I should hang him on my ceiling in my bedroom!! LOL
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Loved the hottie! thanks for that… as far as the nurse and her explanation… how wonderful that she knew what was going on and taking the time to explain it to you, that is a very caring compassionate nurse Al is lucky to have her there.
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yes, there are definitely some good nurses out there. I love finding them
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she’s absolutely right Terry ! He’s on his best behavior ! That scoundrel 🙂
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They said that he only feels comfortable enough here with me to be his true teary self, lol. lucky me!!! lol
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