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closer to decision time


swilkinson

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I am in danger of becoming a blog hog…lol. Every day something happens and I think: “I will blog about that.” I think it is because I am really lonely with Ray still in hospital and no news yet of what they are doing to get him moving. I am getting stressed about this now as it is now 28 days – four weeks, since he actually had the stroke.

 

I went in this afternoon and he seemed fine, he was sitting up and looking scrubbed up. I took that to mean that he had recently had a shower but didn’t ask if it was his second or third in the day. The last bad day was Friday afternoon, something seemed to be going on then as his head was down again and he was doing a kind of stuttering speech where he repeated words over and over. I was really worried about that. There are horror stories of another small stroke catapulting people into severe dementia with no pull-back.

 

By Saturday afternoon he was speaking clearly again. I was his only visitor over the weekend as Trev was busy and really no-one else is ringing or volunteering to visit this time. His younger brother saw him Thursday and so did Trev and my nephew Bill so he has had others come. It is difficult now he has a short attention span as making a conversation with him turns into a kind of monologue about my day, my week, my activities and a few questions about what he had for breakfast, lunch and dinner.

 

I have started the process of looking at nursing homes. It is not something I want to do but in the light of his Friday confusion and that he is really not walking yet I am not convinced that he will be able to come home. On the other hand I have also looked at having a second toilet, this one to be put into our existing bathroom, so if he does come home and it takes a while for nature to take it’s course I will have another option…lol.

 

It is such a difficult time isn’t it? You want something positive to come out of all of this but you have the old doubts and fears returning. There is no-one who can help you go through the decision process as the one most involved is no longer able to make decisions or even help you make an assessment of the situation.

 

Thank you to all who have sent me PMs, contacted me via Facebook or have posted comments on my blogs. I do appreciate the support you are offering me. I think I am doing okay. I cried a lot the first week he was in hospital not so much last week and this week I have got back to my old stoic self. I know this is a long slow process and I am hunkering down for the long wait.

 

I went in to see Mum today and watched one of the aides feed her lunch. She is on a well-cooked cut up diet with mashed vegetables and lots of gravy. She opens her mouth for every spoonful, makes an attempt to chew and swallows. No coughing now and so they are including foods not pureed. She has fruit and custard for dessert. Not being a diabetic she can have some sweet foods. She still has thickened fluids as she still has some trouble with swallowing water-like fluids.

 

Mum has been so well looked after in the nursing home. I was worried about her at first as she was very agitated at being restrained but now she sits in her jelly chair and kicks her feet to music, closes her eyes and has a snooze, looks about her, listens to the TV. It is not as active a life as I would like for her but considering her deficits now with severe dementia it is enough. And when I am there I take her for a push around the place, into the sun if I can and make sure I sit close to her and talk to her and do things like hand massages. It is a pleasant way for both of us to spend some time together.

 

I know the experience with Mum will not be duplicated for Ray. He still has a lot of awareness and although he is physically unwell at the moment if that changes then he will wonder why he has to be in a nursing home and why he isn’t at home with me. But once he is in a nursing home and I have signed all the paperwork and paid out a great deal of money to get him there the decision will be irreversible.

 

I am finding all of this very hard to deal with. I would like someone else to make the decision and say that it was the obviously right thing to do. I know people keep telling me I cannot sacrifice my life and my health to keep him at home, and part of me agrees with that. The logistics of looking after a man who cannot walk or help himself if you are not trained for it or set up for it are very demanding.

 

But some part of me keeps remembering:“till death us do part.”

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Sue,

 

I know I will have to walk in those shoes some day soon also, and my heart aches for you now. But, knowing what a faithful wife and daughter you are, it's not like you would be abandoning Ray if you were forced to place him in a nursing facility. You will still be the "hands-on" caregiver that you have been at home, and that you continue to be with your Mother. Same stuff, different location - and more able to be a wife to him instead of nurse, cook, housekeeper, etc.

 

You are in our daily prayers!

 

Sarah

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Sue:

 

My heart breaks for you, you both are in my thoughts and prayers. I agree with Sarah if you decide to keep ray in hursing home your role does not change you will be still his caregiver only hands off this time, since you can't do heavy lifting anymore. I hope you will be able to consult with your family & will make decision which will work well for all of you.

 

Asha

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sue,

 

I know that this is an agonizing time for you.

 

I hate to think of a time when that may be a choice that I will have to make.

 

I pray that you have the courage to do what is needed. A day at a time is what is required.

 

Ruth

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Speaking of toilets, I was in Home Depot today and they got a sale on tall elongated one for 98 bucks, that's a steal from the regular price for that toilet. I think I will get it to replace the one downstairs. I don't know if you have that store there, probably do!

 

Sue, it's just getting to the point you gotta do what you feel is best and no one knows like you do! I will understand your decision! Take your time and my heart is with you, and you know the deal better than any other person close to you. :unsure:

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Sue, I have been thinking of you and praying for you and Ray even tho I have not messaged you. I know you are quite busy with going back and forth to the hospital and it must be exhausting. I have been there and I have had to make those tough decisions twice. You will do the right thing. Even though it is your decision, you can have the support of your minister and family as they will be a big help. Things will work out.

:friends:

Julie

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Sue, My heart goes out to you. I am learning about this illness threw people like you and I thank you for sharing. You are in may prayers. remembertolaugh, Jeannie :cocktail:

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Sue: I can not imagine all the emotions going through you every day. That alone is exhausting.

 

But I am a "prepared" girl. I want all the options laid out on the table. And you are doing all that.

 

How often have you said to me, "Debbie, you will know in your heart." Because you know that their needs often come before our own. That is called love. And how many times in a lifetime do we get to feel and experience that. So, we get our ducks in a row, educate ourselves and pray every day that some guidance will come. When I am on an issue, I often smile, knowing that is one of the reasons Bruce fell in love with me. That total trust that I do not react knee=jerk. All avenues have been investigated.

 

I know your heart is breaking. But again one day at a time. Hopefully you will not be forced to make any decisions until you are ready.

 

Please know I think and pray for you and Ray every single day. I can only fathom the pain, for both of you. Glad visit with Mum was positive. Take a walk on your beach. Try to clear your head for a bit-easier said than done, I know. But somehow that seems to quiet you, Debbie

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I hardly know where to begin. I do understand all the emotions you are going through right now. And even though you have been through this with your Mum putting Ray into a facility will be a whole different ballgame. I don't think that there is ever a point where you completely know that it is the right time to make that step. I still question it every day. You have to make the decision but it does help to listen to what the professionals are advising. Yes, there are a lot of times that we know better what to do for our husbands but this is such an emotionally charged decision that you will find that they can be of a lot of service in urging you to the best decision. As for me, I have yet to fully accept that once the decision is made there is no going back. Maybe that is a bit of denial on my part but it helps me through the right now. I will continue to hope that you have a little more time at home but at the rate things are going it may soon be time for what you have felt coming for a long time. Any way I can help just ask. You can always message me.

Ruth

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