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planning ahead


swilkinson

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Ray was not accepted for the Transitional Care Unit as his progress is "too inconsistent" - well folks he has brain damage!!!. I guess it was an outside chance and I was willing to do it to get him home with more abilities. I know there is only so much money to put into these things and so they only take the "winners", those who will benefit most from the more intense physiotherapy etc. I am just sad that this time that was not Ray.

 

So I have had a couple of interviews with the social worker, members of the team who have been looking after him and now discharge planning starts. I am disappointed with what has happened but Ray is and always has been since the 1999 strokes down as "unmotivated" so I wasn't surprised with the result. It is a "move it or lose it" world.

 

I now have to acquire any new skills I need and the equipment to bring him home. I am promised more care but will see what the reality of that turns out to be. I am not happy with what has happened but as the care itself has been good and as it IS Ray's attitude that is the stumbling block here I guess I will have to accept the "things I cannot change”.

 

I hate the "being in limbo" feeling. I visit every day for at least a couple of hours around noon, I still visit Mum, do the housework and the laundry, pay the bills, make phone calls and send emails to keep people updated. The days tend to have a sameness about them so sometimes I don’t know what day it is but even Ray remembered that today was our wedding anniversary (43 years!!!) so that was really nice. We have also had congratulations from some of the other patients (the sun room mob) and some staff members.

 

I know some of my family consider this respite as I haven't had to do all the extra laundry etc that having Ray at home entails but for me respite is a time when I can get away and do my own thing and believe me this is nothing like that! We have had weeks of heavy rain so that has hampered the visiting and I have been his only visitor for many days in a row. Even Trevor hasn’t visited.

 

Change is always a challenge for me and so I hark back to the days when…Ray could walk, wasn’t incontinent, did listen and respond and wasn’t 24 hour care. The older nurse who came by today with a whole heap of notes on incontinence aids and the one who came to help me establish where Ray is as far as night-time incontinence is concerned are both a blessing, representing that body of nurses who really were there to help you cope with what lies ahead as well as look after your loved one in their care.

 

The good news is I may be entitled to some extras, like discounts off the pads I’ll need for Ray, deductions in the hiring of equipment and maybe some laundering if I need it. This is another disability scheme I can enroll in and one of the nurses is finding out about it for me. I will also enquire through our local pharmacy as they have another shop with a large equipment section so they might do discounting too. You have to save wherever you can and make one dollar go where two dollars would otherwise have to be spent. My Scottish ancestors would be so proud of me!

 

I keep on going because I have some family support, a few of my old friends still keep up with us though there are many others who have fallen away. My faith and church friends who have me on their prayer list also give me confidence and my cyber friends here who also show love and concern and send up prayers for me do too It means such a lot to me, particularly on those bad black and blue mood days.

 

So looking ahead, Ray comes home Monday 1st August and hopefully care team members start coming to provide the services he needs. At the end of that week is the wedding, on Saturday August 6th – I guess a big let-down comes right after that. Then a month more of winter and then Spring!!!!

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Sue,

 

I'm still pretty much a newbie on this site but I've read many of your blogs and feel that I know you. You are such a very strong person and I pray that once Ray comes home things get better. I'm finally coming to my own realization that there are some things that we do because we have no other choice. Taking care of a sick loved one is one of those things. The battle is so difficult but hopefully the reward of knowing that the one you care for is somehow appreciating all that you do is what keeps us going. You are one of the people that has pointed this out to me.

Thank you

 

Julie

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Sue: I am sorry about losing out on the Transitional unit. That would have helped so much. I am glad you have some professional help on board that you trust.

 

My medical supply company gives me a discount on the Texas catheters because I buy in bulk. Mary Beth registered me at Depends.com. I don't know if you have that brand there, but whatever Incontinence brief you have, go to their Web Site and register. Depends sends me coupons every week and I can use them at the warehouse store or anywhere else there is a sale. Rinse his leg bag and overnight drainage bag out with vinegar when you switch and let hang dry. These should last a long time as long as the residual is rinsed out.

 

Bed pad under his bottom sheet and one over the bottom sheet. I invested in six of them, since we all do laundry every day and Leo suggested not putting them in the dryer as they shrink and curl. So I have a rack next to the washing machine where I hang them to dry. They also work great in the shower for under his feet after the shower is turned off. Water-proof mattress pad is a must. I purchased nine very cheap white hand towels for the WC. They can be bleached and save having to do the WC cover every day. Bruce sits on three of them during the "bad" times of day. The cover has the velcro which prevents the cushion from sliding forward, so when it is off the cushion, I am crazy that the cushion is going to move and over Bruce goes. Use the pad in the hoyer if he is wet when you have to transfer. I found it easier to change Bruce in bed before he could stand and balance. Also white washcloths.

 

I know you value his appearance, but to make things easier for you, consider elastic waist pants and shorts.

 

As for food, cook ahead. Make two meals every time you prepare a meal. Anything you make can be put in a blender or food processor and then frozen.

 

I am hoping all this does not put too much of a pall over the wedding. First few days you will be just glad to have him home and try to set a schedule. Such a tough time for both of you. I understand the motivation issue too well. So you will adjust as you have to. Prayers, Debbie

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Congratulations first, on 43 years of marriage! So many marriages seem to fall by the wayside nowadays, it is nice to know that there are those who continue on. You and Ray are wished the very best!

 

Congratulations second, on a date for Ray to come home. Even though it is not what you (nor I) hoped for, I know that each of you will have a certain amount of peace that comes with being at home. I pray that you will be able to take time for yourself through this next stage in your life.

 

I searched google earth, found New South Wales, and also Gosford - I re-read some of your earlier blogs looking for places you mention, and I was amazed at the abundance of water there - I truly don't know why! My hero years ago was Eyvonne Goolagong - I was learning to play tennis when she was a star, and I fell in love with your continent then.

 

My prayers are for you and Ray, that you each may find comfort in your lives together.

 

Kathy

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Sue,

 

Debbie's given a lot of good tips. Dan uses external caths but only at night. When I first started researching the caths I found that a lot of companies will send you free samples to try their product. The best one that I found is called Gee Whiz and it's made and sold by Merlin Medical Supply in California in the US. They are expensive but in the states Medicare will pay for them with a doctors prescription. I like them because I have to put them on and off Dan and they are very easy to do. I put a plastic container under the catheter bag at night just in case it leaks.

 

You've been through so much and this is just one more thing. It will be a lot different for you when he comes home this time. You will learn new skills, some will be more difficult to accept than others. At first it was very difficult for me to have to take care of Dan's toileting, bathing, etc. but you get used to it. I definitely know more about the male anatomy now than I ever did before! lol

 

I wish you and Ray the best. Keep your chin up and remember to take time for yourself.

 

((((((((((hugs))))))))))

 

MJ

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