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Tillymoo Posted January 2018

What is happening?

I wish someone could just explain what is happening and why. I can't concentrate on anything, my dad is always at the back of my mind. He only retired in 2015 he's 72 years old. He has had so much going on it would take an age to write. But most recently 12 weeks ago. He suffered 3 strokes within a week. He stayed in hospital for 10 weeks. His recovery was slow and is now very limited. He cannot walk, move his left hand. his right arm can move and lift but he struggles to bring the arm to his face. But he can if he pushes himself. He is now bed bound. He is peg fed due to the stroke affecting his throat. He has been in a temporary bed in a nursing home for the past 2/3 weeks, as the plan is to send him home. With carers out 4 x a day. I didn't like the idea. But it's my dad's descion. He still has capacity. Although he doesn't engage very much and often stares or just watches the tv. Yesterday he was sent to hospital as his oxygen levels were low and he was sort of breathing fast and shallow. They did a blood test and it showed his kidneys aren't functioning very well. He does have a chest infection the doctor told me tonight. But they are not looking into his kidneys as they want to get his oxygen levels right. He seems better today, but he is not emptying his bladder (this is a first) and he has no urge to go so they have put a catheter in. My dad has I guess given up. He's hard to talk to and won't engage with me. I find this very hard emotionally. But I try to see the world from his point of view. The only thing keeping him alive really is the peg feed. He just seems to be going downhill. And it's one thing after another. Why is he being tortured?

freqflyer Jan 2018
Tillymoo, try not to think that your Dad has given up, he can only do what he is able to do. Dad is probably exhausted from this whole medical ordeal, and even he doesn't know what will be next on the agenda. He probably is trying to be brave for you.

Try to be brave yourself. Don't let Dad see you falling apart otherwise he will struggle to keep on going, and in reality you want Dad to get back to being the Dad you always knew, this may not happen. Dad might "rally", meaning he will make great strides health wise, but know with a "rally" it is temporary, a day or more.

I remember when my Dad, who was my side kick, we were two peas in a pod even though I was his daughter, my Dad had a "rally" then slid into a coma state but I was told he could still hear me.....

I told Dad not to worry about me, that it was ok for him to go be with Mom [who had passed a year prior], that he taught me a lot about taking care of a house... who taught me to name every tool in the toolbox and what they are used for... and how to use those tools... and not to be scared of bugs :) Dad passed peacefully a few hours later. It was a blessing as Dad's quality of life just wasn't there any more.

Tillymoo Jan 2018
Thank you. Sometimes I don't think of my dad. As poorly more. The hospital will fix him and he will be on the mend soon..
I will go to the hospital in the morning and wait around to see the doctors They did mention that a blood result said his kidneys aren't functioning properly. When i asked the nurses again they said it was fine. Thank you all again for your replies. X

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BarbBrooklyn Jan 2018
Tilly, you need to be in touch with the doctor managing dad's care and ask if it's time to consider Hospice care or palliative care. It sounds as if dad's kidneys are failing, which is a life limiting condition.

Tillymoo Jan 2018
Yes, when I say it's the only thing keeping him alive. Well he's there mentally. Hes not vegitated, Albiet he doesn't try to talk very much anymore. Probably sick of me saying 'what dad, pardon dad.'
I think he has given up. He can't walk. Use his arms.
He can barely talk. He's double Incontinent.
In my eyes the only thing keeping him going is the peg feed. If that wasn't there, he wouldn't be here. Would He?
Now with his chest, oxygen?
Blood on his stools. Blood in his urine. (Last two have been seen today)
It's like constant torture. One thing after another. Nothing is giving him peace.

Sendhelp Jan 2018
To help us help you,
You can post here, on your original question, for continuity's sake.

You mention that the only thing keeping him alive is the peg feed.
Did you want to talk about that?

Tillymoo Jan 2018
Thank you all for your comments and taking the time. To write to me. I really appreciate it. 
I have read through each of your replies. 
I have many concerns but no one has actually mentioned dying or death to me?
He is on the peg feed as it was what he wanted and understood.
He wanted to go home and be cared for there. 
I'm sorry I think I just have to.many questions and problems to put into one post. I may ask another question . With more details. 
Thank you all again love tillymoo 

talkey Jan 2018
Has hospice been offered? They may be able to help you and Dad thru this time. I spent time with my own dad, talking, playing some of his favorite music, holding his hand, and just sitting with him.

kkilleen Jan 2018
There is n0t much to do at this time. read and sing to him, Play his favorite music. Cuddle and love him. Be glad you will be with him when he need you most. you are in my prayers,

Midkid58 Jan 2018
I'm so sorry for you having to watch this go on. Your dad is likely dying, very slowly. All the things they are doing for him are just stopgap measures. Strokes literally cause some portion of the brain to "die" and all the associating functions from that area of the brain are gone. Sometimes people rebound amazingly well from a stroke..it's not a one size fits all kind of thing.

Did your dad WANT the peg feed? Did he want extraordinary measures in order to keep himself alive?

I'm sorry you feel he is being tortured--life is just very, very hard sometimes. We don't always get to 'go gentle into that goodnight'. All you can do is be there for him and love him.

HolidayEnd Jan 2018
It sounds like he’s getting worse and you must realize that he’s so handicapped from his strokes and his entire body is obviously affected that he might have decided it’s not worth the struggle. Be willing to accept that his end could be near and that he may prefer that than to being paralyzed.

I know I’ve seen some people who are beyond recovery give up and fade away. My grandma did that.

Katiekate Jan 2018
First, you must understand that he cannot go home. Unless there is someone there 24/7 he cannot be released by the hospital/nursing home. Cannot walk? Cannot feed himself?

Next...the outward manifestation of stroke are not the whole story. The damage to the brain means damage to the whole body, Each organ is controlled by the brain, no telling what every thing damaged is.

What is happening? To be honest, this is the beginning of the end. The swallowing function returns to 70 percent of stroke victims within 6 months. 5% die from aspiration of food in the first few weeks. The rest never recover this function.

Most stroke victims die within the first 2 years. BUT, no insurance company will write a life insurance policy till they have live at least 5 years.....that is because their actuarial tables show that the survival rate for 5 years is almost none.

His failure to communicate with you could just be he isn't capable of putting words together any more. Stroke usually takes away the processing of language...both hearing/understanding and writing/speaking.

I went through all this with my Mom. Take this time to spend as much time with him as you can. Try visual communication...pictures, music, etc.

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