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a tough decision

swilkinson

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The past few weeks since Ray has been back in hospital have been awful. It seemed as if each day I got some new bad news. This is wrong with Ray, that is wrong with Ray, his behaviour is worse, he is having hypos through the night, he seized one of the nurses by the arm and wouldn't let her go.

 

I can only take so much bad news in. In the end I wanted to say: "So deal with it!" Instead I took on the guilt of a mother with a child who is misbehaving at school. In the social worker's interview this week she remarked how much I had changed in the past six weeks. I guess the stress of it all has just ground me down. And that is why I knew that they are right and I will not be able to manage all of Ray's care needs now and he will have to go into full time care.

 

The interview on Monday was the most shattering as the social worker who likes to "tell it like it is" was fairly brutal in her assessment of Ray's mental capacity now. I wouldn't say she exaggerated but she did describe the bad days as if that is all there ever is or will be. I was devastated and cried and cried. I was alone as I had not expected to have that particular interview right away, Ray only having got back there on the Friday.

 

The past few days have been like walking though a fog. The road is familiar and you know if the fog would lift you would still see the landmarks but while the fog is there landmarks are invisible.

 

Our daughter came up by train and arrived at 8.45pm on Tuesday night. I was so glad to see her as I thought it would take a lot of the strain off Trevor and Edie. She and Trevor sat in on the interview on Thursday morning and because they had been forewarned by what I had told them about the interview on Monday they did both have tears running down their cheeks but agreed that they did want me to survive this and placed care was our only choice. If they had decided the other way I would have gone along with that but I know the amount of support I would have needed was beyond reason.

 

We then went together to look at a couple of nursing homes in the complex close to where I shop and behind where Mum is right now. The accommodation at one is like large rabbit hutches, each resident in a slice of a room with a shared bathroom, another had four beds in what is obviously a large room designed to take three beds. Another was okay, full of light, cheerful staff but the "extras" would take a lot of my money as well as Ray's to pay for, don't know how much I would have left to live on.

 

Now we have to wait and see what I can work out from our financial point of view, what is available and then make the decision. Of course there will be pressure for me to get on and make the decision as the hospital needs to "free up" the bed. And it is my decision. I cannot get Ray into the nursing home where Mum is as that is a three phase system, self-care ->hostel care -> nursing home so they always have a long, long waiting list. One of the others will have to do.

 

Will Ray's conditions improve? Some people do really well in assisted-living nursing homes. They love the fellowship, the fuss the staff make of them, the courtyard and the activities - whatever angst they have had they leave behind at home or in the hospital. Others grieve and pine and don't do well at all. Only time will tell what is to happen to Ray.

 

As for me, I will grieve and hopefully one day come back to whatever is a "new normal" for ex-caregivers.



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Sue: I am so happy Shirley was able to join you and Trev for the meeting about her Dad. It will be so important for both of them in the future that they knew they were on-board, were informed of the situation and were asked for their input. They have themselves, their spouses and their children to educate and console. I commend you in including them and asking for their input. Being full-time caregiver to their Dad and their Grandmother, one could understand where your priorities lie. But to include and support your babies is just wonderful. This is very hard for them and I am so glad you recognized that and included them.

 

As to your Ray, do the best you feel for him. Keep in mind that money may not be an issue. What looks good on the surface, may not in fact end up that way. I would get him on the waiting list for Mum's facility. You do have some pull there and some favors may have to be called in. Ask to speak personally with the Administrator. You never know. Trust me, it is done all the time.

 

In the meantime, shuffle the numbers. Maybe go for the fully paid without funds coming from you. See how it goes. In the meantime you are on the waiting list for Mum's facility.

 

Ray needs to be stabilized medically: AFib,Diabetes,Cognitive. There are drugs for his Dementia-won't cure it, but may delay it. Can't be done until the irregular heart rate and sugars are resolved. I would look to the medically aggressive facility, knowing that is going to take some time. So you want a facility with a full time medical staff, not one with an on-call. And I think if you readjust your thinking to the medical rather than the physical recovery that may narrow down your choices.

 

Please know you are all in my prayers and thoughts. I can not imagine what you are going through. I know, for me, all I want now is for Bruce to be able to live out his life in the home he built and loved. I pray Ray's dementia takes him away from all that to a place where he is comfortable, warm, dry and has some outlet for laughter during the day. That is the best I can pray for him. Debbie

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It seems like when it rains it pours every time since I been grown up. We know it will be days like this just not so many so close together would be something we could tolerate much better when dealing with our loved ones and all health issues for them and ourselves. Thank God you are a very strong woman but how much more can you stand in one life time? Only God knows.

Fred!

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Sue:

 

I can only imagine the struggles, trials and tribulations you are going through. I admire you very much.

 

I have been following your blogs, reading how you are a strong advocate for Ray. Yes, you want the best for Ray, and, as his wife, you will do everything in your power, to accomplish that.

 

However, there will be a time when you need to 'step back' and seek additional assistance. Sue, you have been a 'trooper' since Ray's first stroke, and for every stroke afterwards.

 

I can understand your feelings, about putting Ray in a nursing home. And, I share your frustration, but, like the caseworker stated, you 'look bad these last six weeks'.

 

Remember, God doesn't give you more than you can handle, but He also provides a way out of it.

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Sue, I can really relate to the conflicting emotions that you are going through now. It seems like we would much rather pour more into our hubbies just to keep them with us. But eventually we do have to take care of ourselves. I picked up on you calling yourself an "ex-caregiver" something I thought of myself when Dick went into the nursing home. But you will still be caring for him every day just in a modified manor. Do check with the facility where your Mum is. At least here they make room for people who have had family in the facility. And that waiting list might not be as long. It would be simpler I am sure to have both your dear ones in the same place. Getting to know the nurses and aides is a big job in itself. I would check out all the facilities at different times of the day as well. You need to be comfortable with how things are run in the evening and at night. Of course you have experience all ready with you mum but somehow it all seems different when it is our spouse. My thoughts and prayers will be with you.

Ruth

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Sue,

This is so hard.

 

Time will tell what happens. But, yes, I agree with debbie and Ruth. Try to get Ray into the facility with your Mum. They should want relatives in the same facility.

 

I pray for you and Ray and family..

 

 

Stay strong....

 

Ruth

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Sue, so sad to hear what you have been going through. I can relate a little as I had to place my mother in a nursing facility years ago. I think I was in a depression at the time. You have to stay strong and take care of yourself. This way, you will be able to oversee Ray's care. I agree with those who posted here on getting Ray on a waiting list. As my friend found out with placing her dad in the best VA facility here, it is sometimes who you know that helps get him in. I pray for you both.

 

Julie :friends:

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Sue:

 

Even reading this was so hard I can imagine dealing with it on personal level must be so hard for you & your family right now. I pray for your strength to get through this difficult time right now. remember all decisions taken with right heart are good decisions so don't second guess yourself. When we do right things even God also help us in rearranging things to go right way.

you both & your family will be in my thoughts & prayers.

 

Asha

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Dear Sue,

 

What can I say that has not already been said, I am feeling your pain and sending all my positive thoughts your way for Ray, you and your family.

 

I am so sad reading your post, you know in your own mind that you have done your upmost to keep Ray with you in your home...but there comes a time that we all know when is the time to have a loved one cared for in a nursing home.

 

Sue, You will all be in my thoughts and prayers. xx Doreen

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Sue,

 

I am so sorry you are having to go through rough times.

 

Thinking of you and praying for you.

 

Take care,

Lin

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Dear Sue,

 

A couple of your comments stuck out to me. First, "I knew that they are right and I will not be able to manage all of Ray's care needs now and he will have to go into full time care."....acceptance....a point we all have to get to if our spouse's mental and physical conditions decline to the point where Ray is now.

 

Second "...she did describe the bad days as if that is all there ever is or will be..." reality....the place Ray may be, regardless of anything you or anybody can do, by virtue of the horrible onslaughts of past strokes that have caused the vascular dementia.

 

I guess we never will know exactly what we miss when we are caring for our husband. In our care they are comfortable and feel safe. In many ways we protect them as we protected our children when they were little children. It was only when they were away from us they developed their coping mechanisms. I guess the way I view it with Bill is that he isn't able to develop those coping mechanisms. If I am not there to run interference frustration may well take over, as it does with many Alzheimers patients. We don't know why and we don't know whether it will get better....we don't know what part of the brain is being attacked now.

 

I'm sure we whose husband continues on to Ray's condition will go through exactly what you are experiencing now. I don't know that it can be any different because as a caregiver we begin to view our identity as "caregiver" and we expect to be caregiver until our spouse takes his last breath. I know, without a shadow of a doubt that our God is bigger than even this heart break. Get out your Bible and get yourself into the Psalms. Spend some time meditating, reading and praying. The decision you will be making will be made easier if you can lean on God to help you. I am not saying anything you haven't heard before and I offer this suggestion with all the love I can possibly offer. As I've said so many times, God IS still good - even when we feel our most alone and shattered, He wants to carry us through the dark and the fog.

 

Love,

 

Ann

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Oh my gosh, Sue!

 

I've been so selfish with my concerns re: Steve that I hadn't stopped in to check your blog. And this is the first one I've read! (will subscribe now)

 

Wow! I am So SORRY to hear that you are at this point. But you are here YEARS after it would have been needed had you not been such a good and devoted caregiver! I know the fog is difficult, and moving to this stage is never what you would have wanted (for myself I'm still pretty damn *beep* at the daugher-in-law who two days ago "reassured" me that I shoud be *happy* to have a roof over my head... as if a roof over my head was somehow a nearly-deserved prize for caretaking Steve!)

 

You are a GOOD caregiver, and you are STILL a caregiver. NOT a "former" caregiver.

 

I worked in two different nursing homes when I was younger. One thing I learned from my work there is that having a loving, caring person involved in the life of a person in a nursing home makes ALL THE DIFFERENCE. You ARE a caregiver. Even if the exact geographical location of the person you are caring for has changed.

 

With luck, and a great deal of perseverence, I hope to make it as far with Steve as you have made it with your Ray.

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