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talking for two



The carer who comes on Friday to look after Ray for my three hours respite had a long talk to me this morning. She had been worried that she has been minding Ray and has not had any training on looking after people with dementia and took advantage of an offer to go to a seminar and said she learned a lot that will help in her work. The mentor who runs the support group I go to ran the seminar. He is excellent. I have learned so much by going to that group.


She had not been able to stay for question time so decided she would ask me her questions. I could answer some of them out of my experience with Mum and Ray so she was happy with the answers. There is a saying though: “If you have met one person with dementia, you have met one person with dementia” which means all dementia sufferers are different with different cognitive levels, different behaviours and different problems. I guess there are some commonalities and if you work with dementia clients on a regular basis you get to recognise some of them and work out how to deal with them. She gets on just fine with Ray.


She asked me if I ever felt tired as the mentor had stressed to the care professionals that the caregiver was acting and thinking for two. That is certainly how I feel at the moment as if I am walking and talking for two, escorting Ray for all his medical appointments, filling in the forms, answering the questions on his behalf etc. I am glad she went to the seminar, at least that is one more person who knows what it is like to be part of a household dealing with dementia.


I took Ray for the cortisone needles today and although for some reason I thought they were looking at his ankle the needles were actually into the bottom of his spine. If he is still in pain by next Wednesday he needs to go again next Friday for another one as it means they have given him too low a dose. I hope something works soon as both he and I are having broken nights sleep and that never sweetens my temper!


We did go out last night with the friendship group and I was glad in some ways we did but listening to everyone’s plans for a trip overseas, a long stay in a warmer climate at an expensive Resort, a caravan expedition up the coast to northern Queensland etc it is very hard for me not to feel envious. In some ways they all come from the Planet Normal and I don’t. They all enquire solicitously how we are going and give Ray a kiss and me a hug but I know they will never know the feeling of isolation all of this sometimes brings on.


Just talking to my older son who was complaining how tired he is, how busy his job is etc. As he works for a firm of funeral directors and this is winter I guess this is peak season for them and a very busy time indeed. I am glad he has a good job and earns a good wage to keep his little family going. Like we did he will find having three children is expensive and it never was easy to make ends meet so a good wage coming in helps it all happen. Funny how this generation acts as if no-one else has ever been through this though.


So…what does the future look like? Hope it is soon pain free for Ray and I have the strength to keep going looking after Ray. It is winter so I can make that the excuse to take some time at home, to maybe clean out some cupboards and finish off some of my craftwork.


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i like the planet normal. Unfortunately, unless you have walked in somebody's shoes, you do not know what they are going thru. We have learned how true that is.


I think of vacations and I just want some free time at home. I would get envious, but I just don't have the energy for that.


You are blessed that your caretaker was interested enough to learn more and ask you questions. That was fabulous.


Have a good weekend. As always you and Ray are in my prayers.



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Sue, as the doctor probably told you the cortisone may not kick for a day or two. Hopefully for both of you, Ray will respond soonest. Bruce is trying to solve his own sleeping problems himself, and I am so proud of him He has so little he feels he has control over. I am really impressed by the initiative of your caregiver. One soldier on your side. She is to be commended. My caregivers learned all they could from PT and OT to help Bruce, but it was on my dime. Encourage her to continue her research and bring discussions to the table. There were insights that Jen and Leo had that only helped in Bruce's care and recovery. Had dinner with my best friend this week and she laid out her plans for OUR retirement. She is such a blessing. Said all these places she wanted to go to and to see, but she wouldn't do it without me. I hope you are feeling better and taking care of yourself. The lack of sleep does not help. But since it is winter and your outside work is limited, perhaps you can take a page out of your own book and rest when Ray is resting, or if Trev can give you a few minutes off. Please know I am thinking of you, Debbie

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