swilkinson

:yay: Celebrating Sheryl's improvement!!! :cheer: Imagine I'm dancing, waving my tamborine, singing alleluias! Okay that's enough but I AM impressed by your progress and your attitude is the best! Thanks Sheryl, for the reminder that progress comes when you are ready and not so many days after the stroke. I never met you before the stroke so you sound perfectly normal to me. (((hugs))) from Sue.

Fred, I hope your second point: "Keep only cheerful friends. The grouches pull you down." isn't the reason our friends don't call any more...lol. The rest of it I agree with. Sue.

Julie, glad you got the compliment from Larry's daughter. If your kids are like ours they don't do that a lot. We had a BBQ dinner for Mothers Day too, it wasn't as warm as I would have liked so we did eat indoors. But it is nice to have our boys around to share it with us. Sue.

Lyn, glad the weather has warmed up for you. You had a long hard winter and we are heading into ours now. Wish I could come over and enjoy your summer. :bouncing_off_wall: Sue.

I have just been to a one day seminar called “How do we cope?” and I can tell you that the service providers and helping hand professionals have not a clue what we go through! It became obvious when we did a hypothetical this afternoon that giving us a few hours respite care a week is as far as they are prepared to go. It is as if they are blinkered and do not see the need people are in OR see a gaping hole and know they will never fix it. I try to manage with the level of care I have and never complain but I know I am going to complain because I do need more time off than I get and so I get too tired. Then because I am only human it all comes tumbling out – in a big ugly vent. The person who mostly cops this is Ray as I express that I don’t want my life to go on like this etc etc. Sometimes Trev turns up at the wrong time and I tell him or I simply come on here or go onto Facebook chat and tell the next person I talk to all about my problems. It is one of those “better out than in” events but it is tiring in itself. One man at the seminar was so angry I thought he was going to have a heart attack as he shouted: “Don’t tell me what is available tell me what you can actually do for me!” It reminded me of all those political promises we get every few years, help for carers, better access to health care, better assessment services…oh yeah? And how is that all going to be funded pray tell? The angry caregiver looks after his wife who had MS and has been doing so for 22 years. Wow, that is a lot of caregiving hours. We finally had a BBQ last night for Mother’s Day. It was late starting and it was really cold out by the time the boys has finished BBQing. The four children, Tori, Lucas and the two little boys flashed in and out of the lighted areas with various adults calling out: “come back to where we can see you!” No harm came to any of them though they might have been a little hard to wake up for school and daycare this morning. My daughter’s parcel arrived this afternoon, just a few little bits and pieces chosen with love. I like the framed cross-stitched picture that reads: “Housework is the crabgrass in the lawn of life”. She gave me a bag that announced it was a sewing bag, which I will use to take my knitting to craft group on Tuesdays and a pen and pencil set plus two nice cards, one from the grand children and one from her and Craig. It is good to get presents, harder to buy for an older person like me without access to a lot of things. Trev bought me a new electric kettle and a bag of potting mix, Steve complained that he didn’t know what to buy me…sigh. Ray and I seem to be getting on okay but I notice now that his long term memory is going. It was my fault this morning that the sun shines in the window in winter when he is having his breakfast and “blinds” him. It was my fault as I was the one who bought the house. Well no, we bought a small portion of it 41 years ago and have built onto it three times and the winter sun has always come in at that angle. I finished up moving the table slightly but also thinking what a pity it is that he can no longer remember all the memories attached to our three lots of renovations and all we have been through together here. It is quite obvious now that he really has little idea of our joint past. I saw a few people at the seminar I have been on other courses or days out with, one has promised not to lose touch with me this time but we all say that don’t we? It is sad sometimes to see faces more lined than the three years since you have seen them would explain. It is not easy being a carer for older parents, spouses, children or that odd unrelated person that somehow comes into the care of a benevolent friend. I don’t know what the answer is except: CARE< LOTS OF CARE< A LOT MORE CARE etc. And it would help to have the appropriate level of easily accessible respite too. If the best things in life are free why is everything I do so costly?

Julia, it is amazing what we learn to live with. It is such early days for you yet, you just don't know what is ahead of you. I do know life will get better, easier to cope with. I don't think it will go back to what it was. I guess you are sorting out care needs for him now, transport to physio, medical appointments etc or is your son going to handle all of that? I gave up work to look after Ray as he had a lot of deficits including loss of balance,it took the therapists over three months to teach him to walk at all and he still is wobbly on his feet. I couldn't have left him on his own. I wonder now if I could have got some care for him and worked part-time but as they say: hindsight is 20/20.So I guess as we all do, I did what I thought was right for us both at the time. Welcome to our blog community, I hope you find a lot of support here. Sue.

Lavena...like anyone with a restless spirit if you Dad and Mom sit on the edge of the crowd or close by an exit they can come and go as needed. As long as they are there to see you graduate. Good effort you! Congratulations and best wishes for a great future. Sue.

Lydi, sounds like you are making great progress. I had a neighbour's dog who adopted me, she was top dog in our neighbourhood. I had to use a technique when she jumped up of pressing down on her nose. Then she would show me respect. It was funny when we walked together as other dogs would bow to us. You are training Monster and your family at the same time which is good. I think that as you say Monster has been a wonderful addition to your family. Sue.

I can't say this is our experience but I know that happens in the life of one of my sister-in-laws. So she has a "sitting room" a space she has made her own and when his mates come for a boozy party she goes there, turns on her music, makes phone calls, even had a small refrigerator with her own drinks. I think if anything her husband is a bit jealous of her "den" as he calls it. I think in every marriage you have to have some seperate time and space. So put in your order to him and say: you want your space, I want these things so I can have mine. Give and take should be even on both sides...I wish it were so. (((hugs))) from Sue.

We’ve not long got back from our Lions dinner, it is nice to go out and socialise, Ray was pretty good today but tired from yesterday so a little confused. I had a major embarrassment when someone came to the door just as I was calling out to him. It must have sounded like a domestic disagreement as I was yelling: “For heaven sake just listen to me!” It was just his usual game of ignoring me. I am feeling the need for some alone time again. Once more I am filling my “free time” with shopping and other things to do with Ray. Apart from going to the movies with Tori when she was over here I have done nothing further for myself. My next door neighbor owes me a massage for Christmas, he pays for me to go to his masseuse, and I somehow haven’t had even the couple of hours needed to do that. We've had a good few days despite the rain. We can go along without too much fuss a lot of the time. Of course we have good and bad days but then so do all of those people in the "non-stroke" world that we know. Ray and I are two human beings who happen to be married to each other. We do love each other but we don't necessarily agree all the time. I don't think I have got more tolerant over the years, I think dealing with the strokes and the dementia have force me to change my way of thinking. I simply can't afford to be a "me first" kind of person when it is so obvious that Ray's immediate needs have to come first. Having his needs met does not however include his wants. Like Debbie said in her blog I sometimes say: “After I have finished this…” I was worried about the dinner tonight but Ray managed okay. He has once again started having coughing fits which starts off with a tickle in his throat and finishes us with him red-faced and gasping for breath. I don’t know what is causing it as the only change has been the higher dose of cholesterol fighting medication. I will ask our pharmacist if coughing and dry retching could be a side affect of that. I hope not as he needs to take it as he has a much raised cholesterol figure on his last bloodwork report. We had Lucas after school today as Edie has had bad stomach cramps and went off to have an ultrasound this afternoon. It eliminated appendicitis and it is probably not gall bladder problems, so tomorrow she has to have a pelvic scan. I hope it is nothing serious as they do hope to have children once they get married. She was at the local hospital yesterday evening but the scanning machines were all in use and in the end the pains calmed a bit and they sent her home. I found myself nodding during the secretary’s report tonight. Lucas and I played on the Wii for two hours this afternoon while Ray had a nap. I must say playing, golf, bowling, tennis etc against a very competitive 8 year old tires me out. I play against him most Sunday afternoons now to give Trev and Edie some time to talk without little ears listening in. It is difficult to hear yourself think sometimes as he is a chatterbox but I love the lively company. At the dinner tonight we were part of a lively table including our two youngest members aged 50 and 55. They were both in a mad mood and produced some hilarity. It is so good to have a laugh in company with friends and feel that happy buzz that laughter brings. My neighbour on the other side at dinner was a retired minister and he has a collection of funny anecdotes he has accumulated through his ministry and he filled in the gaps with some of his stories. They were even funnier because they were true. When we got home there was a message on the phone from Naomi, our granddaughter whose birthday it was today. We sent her a parcel and she kept it to open tonight, she enjoys a whole heap of little things and I usually buy some clothes too. She is a sweet child and we are looking forward to spending some time with her and Christopher at the end of the month. She was just saying thank you for my present to her Granma and Pa. When I write a blog like this I am reminded of the poem from “Alice in Wonderland” that starts: “The time has come the walrus said, to talk of many things….”

Ruth, yes it is time to ask that question because the way I see it there is no Ruth time in there, except maybe the excursions as I hope you add something of interest to yourself in there. I had to start on respite time three years ago as I knew after 8 years of looking after Ray that I had almost lost the ability to do things for myself. I admit I mostly use the time for shopping and visiting Mum but at least it is "off schedule" time for me so I can relax and wander without pushing Ray in a wheelchair or hauling a whole heap of the things he needs with me. Maybe relax a bit about the pool as time goes by and instead have some time for relaxing in the nearest patch of garden in the dappled shade of summer? Sue.

Sitting here feeling envious. If I were in bed sick Ray would get me out to do things for him still. I'm glad you got through all of this and feel more confident. Sue.

You made me see life as it is for you. (((Hugs))). I saw a lot of this in my hospital ministry so I know how hard the acceptance journey is. You are both in my thoughts and prayers. Sue.

It is the little things we do because we want to do them that give us satisfaction. I love to go to the sensory gardens and just walk around for a while. Even pushing the chair is not a problem when you are drinking in that gorgeous scenery. Enjoy your spring and summer as much as you can, gives you wonderful memories if there are darker days ahead. Sue.

Fred, my Dad was a POW in Germany as I've written here before. He was an ordinary soldier though he joined up as a Territorial (weekend soldier) long before the war.So he had a long history of service. He belonged to an ex-POW's club and I contacted them when he died and they did the Ode and the Last Post graveside and we threw poppies into his open grave. A few people thought it was strange that I did not have a flag on his coffin but I couldn't put the Union Jack under which he had fought and the Australian Flag, the flag of his chosen country on together so had none. Thank you for this reminder that we live in a land that is free because others fought to keep it that way. Sue.

Dean, you are singing my song here. Ray and I belong to a stroke recivery group. Ray is the only one in a wheelchair. A few of the newbie wives ask me if I have thought of getting him some physio! I then tell them he has had five strokes, 1990, 1999 (x2) 2001, 2005. I then list some of his medical conditions (if they are still standing). You should see them go pale at the thought that their hubby could have more than the mild stroke he has recently had. There is a lot of ignorance around, unfortunately some of it in the medical profession. I wish some of the neurologists would talk to the dementia specialists (as they are also experts in brain damage) and they would talk to the physiotherapists and then the nurses aides and maybe they could all talk to each other and pool their expertise and then maybe the theory and the practical would come together. My rant for today...thanks for sharing as usual. Sue.

Sorry to hear Bud has dental problems. Good to see you on again and updating us. Hope you enjoy your spring and summer and live life to the full. Doesn't the convertible solve the single and dating problem? Just joking. Sue.

The damage here is measured in a lot of different ways, position determines what actions are lost, whether the stroke is on the surface or deep (you would know the proper terms for that),whether you were fit before the stroke. There are other factors like the length of time before you got help, if you were in time to have Tpa or not. I agree the number of neurons you lost can be determined but not the recovery you make. Some people have determination and some fold like a house of cards. Some have caregivers that drive them, some loving families who surround them with support. How will you measure that? Even with a 3D image I don't think you could predict how much recovery a person will make Dean, that so depends on the will of the individual and the care and therapy they receive and make use of. Sue.

Thank you, thank you. (((hugs))) from Sue.

Asha, sometimes you blow me away. I do so agree, when we are operating out of jealousy,envy or some negative emotion we do get it wrong. Wrong motivation and wrong attitude never leads to good things happening. So right attitude, good motivation equals good choices. I have to keep that one in my head for future occasions when I need to make balanced choices. You are the guru! Sue.

I agree with Jeannie and check with the provider if they have people trained to work with people with dementia as dementia sufferers have a similar need for routine. Try a different way of speaking to your Dad, talk to him slowly, use concise phrases with short sentences. So something like:"Dinner is ready Dad. Come and sit down. It is something you will enjoy." three sentences at a time was as much as Ray could take in at one time. It is hard for you all that your Dad is so frustrated and it is manifesting in his screaming episodes. Try to set a routine for him, keep assuring him he is safe, he is loved, you will do your best to look after him. It is hard to do what is best for everyone isn't it? I tried so hard when I looked after both my Mum and my husband I almost sent myself crazy. So try to get some others involved in helping if you can , volunteers or paid workers and share the load. Sue.

I do agree that the choices you make make you what you become. And some of the lessons we learn on our journey through pain teaches us wisdom that we use later to help others along the way. I think of Ray's strokes as being BAD and yet without them I would not have met the people here who mean so much to me. It is our attitude to what happens to us that counts too. Sue.