swilkinson

I went to my Women’s weekend yesterday. Well, I didn’t go for the whole weekend but just for a day and I enjoyed that immensely. Especially as Trev had volunteered to look after Ray for the day and I was confident that nothing would go wrong, I could just relax and enjoy the day. I am blessed that since Ray has been off the Metformin and on insulin twice a day his condition has improved, his faecal incontinence has returned to infrequent and his falls have halved. I don’t know how long this will continue to be the case but it feels so wonderful not to have to do many loads of laundry through the week. And what a saving on energy etc it is not having all those clean-ups to do. The day was bright and sunny and a good 80 degrees and no blustery wind or anything else to spoil a perfect day. As soon as I got to the venue I went into the spa. Well as all women know a spa with five women in it is a very noisy place, we talked about all kinds of things slipping from subject to subject effortlessly. As one woman left another climbed in to take her place so it was a very enjoyable 40 minutes or so. I would have stayed in longer but the program said: MASSAGE Sue W 11.45am so obediently I went off and had a lovely relaxing massage. The masseuse showed me how to loosen the tension in my legs and lower back with a few easy exercises. I will take note of the pressure points and hope I can stop some of those sleepless nights when the back aches and the legs twitch and I don’t sleep. We have a small marquee so lunch was there, luscious salad and cold meat rolls and platters piled with fruit. There was also wine flowing like water but I let it flow by me and drank the water instead. If I had been there the whole weekend that might have been different but I don’t drink and drive, if I am driving I don't drink at all. A lot of the women, both caregivers and survivors, went off for an afternoon siesta as they had had a late night Friday night. Friday night is the “release the tension” night so is usually quite intense and the stories I heard sounded as if that had not changed this time. I stayed up with a few others, sitting in the marquee, talking and laughing. One of the women who had gone to a friend’s place for lunch came back with a tray of oysters and prawns so we helped her eat them. These six caregivers sat and quietly ate so as not to wake up their sleeping companions…more likely so they didn’t have to share with them too…lol. I do like fresh oysters and prawns are my idea of heavenly food. As evening approached one of the women suggested I might like to shower and change and could use her room so I did that. I had a new blouse I quite fancied but of course others, younger and slimmer, came out in such glamorous outfits.. No I didn’t feel envious I once looked like that and as caregivers and female survivors we do need to be able to dress up and look and feel good from time to time. As women we can cheer others on so we clapped and wolf whistles as each new “diva” appeared. Dinner was good but the service was so slow. We shared the dining room with the dance floor with others but soon had the floor bouncing. Some people danced awkwardly, some with more grace and rhythm but who cared? We all ENJOYED some dancing in whatever fashion we are now able to. The female survivors particularly feel free in this situation to express themselves, dancing with the aid of a stick or a chair or on the arm of one of the other women. It is always a grand sight to behold. As the time approached for me to go home I felt a bit like Cinderella, but I was so glad I got to experience that day of perfect freedom. I got to talk and laugh and swim and eat oysters and prawns, to dance and sing and enjoy myself in the company of others. I am truly blessed.

you go for it Dean, you have the intelligence and the energy that some of us no longer have. I always read your blogs with interest. Sue.

Debbie, congratulations on the way you worked it all out. As you know the honeymoon period will not last but while it does - enjoy. I agree that doing work or volunteering outside the walls of your home is good for you. I volunteer at church and today was Ray's and my first day as ticketsellers on the Lions Christmas stocking. I did everything but the banking which another Lion did for me and also gave us a 'comfort break'. Hope just being more independent and having more freedom restores to you and Bruce something you had lost. Sue.

Bill, it is so nice to see you back blogging again. A BIG welcome back from me. You have found out what a lot of people know, you have to kiss a lot of frogs before you find the beautiful princess. There is someone out there for you, just take it one date at a time. Be that great companion that every girl wants to meet, a shy bashful young man who is so thoughtful (flowers and chocolates) and kind (opens doors for her etc). Pity you are not twenty years older...sigh...lol. Sue.

I guess we can be of help to others wherever we go. I have been down to visit with my daughter and her family for five days. I wouldn’t say it was as good as where they live now as when they lived in Cairns and I had those lovely mini tropical vacations but it is still good to be there with them all. I love them and I miss them and it is special to be with them. Unfortunately the rain and the untimely cold weather lasted throughout the visit. I had only taken a few clothes so they saw me in the same thing with variations day in and day out. We didn’t get a lot of rain but it rained on and off most days. We got out for one long walk beside the lake but it was raining by the time we finished. Their two big dogs enjoyed it anyway, more than we humans did, who are fussy about the rain and getting wet! While I was down there I was just taken along when they did their work so I got to go to a luncheon for over 55's, a Home League meeting and a playtime group called Mini Music, for the under fives – quite a contrast in terms of who I saw and what they said but at each one I was able to share some of my life, hear other’s stories and share some of my experiences. At the end of the dinner I found myself sitting with four other caregivers and we had a mini support group meeting out of which (I hope) will come a lunch for Caregivers once a month. In any area there are too few support meetings to go to and a lunch once a month should be accessible for a few people at least. I think my son-in-law liked the idea and would support it. I found that with the older ladies they just saw caregiving as their lot in life. They had often cared for parents and now cared for their husband or in one case brother. They didn’t seem to think it was harsh that their retirement years had been gobbled up, except for one lady about my age who spoke wistfully of the holidays her friends had overseas and said with a sigh: “That was meant to be us.” I could so relate to that. And one Mum who had a daughter with a disability and had cared for her most of her life and asked: “Who would not do what I am doing?” I thought that was what applied to some of you here too. I wonder do children ever see us as PEOPLE? not just as Mum or Dad but the ones you feel sorry for and give a helping hand to? I wonder if they see themselves as capable of giving a helping hand? Maybe not, maybe we simply didn’t train them to care for others? I can say that my daughter has some sympathy for me but sees what she herself does in her caring job as a reason that is holding her back from being here, our older son uses his wife and three kids as the excuse and our younger son does do what he can as you know from past blogs. I discussed some of my current needs with my daughter but she still seems unable to give me a time when she can come here. It is as though she has the intention but not the priority to do some of the things I want her to do. I can understand this in a way as her life is busy with “helping others” and I would be just one more person on her list. I want her to sign some legal paperwork but she thinks there is “plenty of time”. Do we have that plenty of time I wonder? I am having trouble getting the family together for Christmas as it is. We had planned a "weekend before Christmas" party at Shirley’s place but now that has fallen apart. I wish I could get the family to consider their FATHER for a change, and their mother as his caregiver. Ray’s condition is deteriorating, this year I should be able to get him down to Shirley’s, next year I may not be able to. This year I have no intention of putting on a Christmas Day lunch for them all, I don’t want to and I don’t intend to. I know that sounds selfish but I have done it for so many years that when Craig volunteered to cook us a nice dinner I jumped at the chance. Please couldn’t the family just co-operate for once? Was my respite break a success? I’ll tell you when I have looked after Ray again for a few days. I have to pick up Ray from respite in the morning, go see my mum in her nursing home and pick up some food lest we starve, or have a very strange diet. It is good to be home again though.

Beth, I am gong to invent an award system for special caregivers and give you the highest gold star award for all you do for your Mum. I had a series of urinary tract infection that lasted almost a year, the slide proved it was a water based infection and I washed myself only in boiled (sterile) water for a time. I don't know how reliable the water they are using is but you could query that.I do hope the Amoxicillin works for her. It would be great if you could get her well in herself to continue rehabilitation. Sue.

Yoli as usual you are so spot on with your blog. I have never thought of myself as being a stress snob, I simply thought it was the Irish in me saying: "I will not let this overcome me". Crystal is another truly amazing woman, together you have done so much for Tootie. :You-Rock: (((Hugs))) for you all from Sue.

Good for you! If you can't find a suitable group forming your own is a good thing to do. Could you please copy this into a post and post it on the survivor forum as it will get more comments there. Welcome to the blog world, a big (((hug ))) to make you feel right at home in our family. Sue.

Doreen, I am just back from visiting with my daughter and her family. I would love to live close by them but she moves every three years so one day she would move and leave me behind. Good luck with your search for land close to your son and family,I agree with the thought that for Bill a son close by might be just what he needs. We are so lucky that our younger son lives just down the road from us. I think I wished you happy birthday on Facebook but if not I am glad it was a happy one for you. Sue.

Asha, sorry to hear of the set-backs both you and your Mom have had but glad you both have help to get around. You are right you are married to an exceptional man. He is a keeper! :forgive_me?: Sue.

Lenny, that grandson of yours is such a joy, you hold on to him tight. Nice that he is willing to share his chocolate with his Pa, he is a really special kid. Sue.

Darling one, one day at a time, one hour at a time, one minute at a time, breath in, breath out. That is the way we have to live when life gets tough. As Mike said: "A lot of people will read your post and not know what to say or respond with, just know they are praying for you." that applies to your friends in real life too. They will hear the news and not know what to say. No one can tell what Bill's future holds or yours so just try to make every day a good day. Sue.

Hi there, at last some exciting news, Trev and Edie are engaged, they told me this afternoon, wedding date yet to be decided. I told Lukie this was the best news as I now would get another grandson although I was prepared to share him with his other grandparents. His grin was from ear to ear. I am well pleased with their engagement, Trev needs to have a wife, a job, a mortgage etc. He is in his mid-thirties as is Edie so they will be fine together. I will never be able to repay him though for what he has done for Ray, he has been just brilliant the past couple of years. He has been my emergency back-stop and even moved back to two doors over to support us when Ray was back to having falls again. Ray is in respite to give me a break. I hate to do it in a way as I miss him and he misses home but for my sanity and well being it has to be done. I am sleeping right through the night and wake up ready to face the day. I have only done ONE load of laundry in four days, not a load every day. The house is cleaned and stays cleaned, the beds are changed, clean and dry. The spring clean is not going well. I am bad at sorting boxes, as I don’t really want to throw anything away. I admit it – I am a pack rat. I have sorted clothes, packed away winter clothes, reviewed summer clothes and have given some to charity too. I need to do a lot more of this and then I will be ready to wash walls, re-curtain windows etc. Well that is the theory anyway. It seems as if I am not going to get the bathroom renovated at this stage as my tradesman has hurt his back…sigh. Mum is locked down in her dementia nursing unit with a gastro bug going through the place so I have been unable to see her. I feel sorry about that as this would have been an ideal time to spend some extra time with her. I make such wonderful plans but they rarely come to fruition. I guess that joins me to the majority of the human race. Joy comes in all kinds of forms so I will continue to look for it every day. There is so much in our local area to appreciate, not the bugs who just ate off my coriander, or the ones that attacked my lettuces but the parrots hanging upside down in the grevillias (bottle brush) when I look out my back door are certainly a delight. And the brush turkey was back in my back yard briefly yesterday scratching up the garden rubbish I had neatly piled up. I will have to attack that job again tomorrow. I have been talking to a lot of people, since Ray has been away I have had more time for phone calls so am using that time to catch up with some of the old friends I haven’t spoken to for a while. These are ones who never contact us but I like them so want to keep in touch. One day we might get together again, who knows? We have the long distances to cover, for instance the cousin I caught up with while Shirley was in Cairns is still 1700 miles away but one day I might take a trip back there to see her again. I am going away for a few days next week so I will miss my chat but I am sure the people who come on regularly will do just fine without me. They are all so supportive of me and each other that it has made my job as a chat host such a pleasure. In the meantime I had better go on with the spring cleaning. Was that a dust bunny I just saw running under that bed?

Jeannie, good to see you back blogging again. Mark me for a fool too as I've often lost blogs. So now, like Mike, I do a word doc and cut and paste. Saves throwing the computer out the window. Sue.

:Good-Post: :Dance: :beer: :Clap-Hands: :happydance: Hip hip hooray! :You-Rock: Bernie and Mike. Well done to both of you. Great effort. Sue and the gang. :chat:

Debbie your blog set off an echo in my mind and I thought "this is me a few years ago" so read: http://www.strokeboard.net/index.php?app=blog&module=display&section=blog&blogid=165&showentry=3132 and see if it has a similar ring to it. Ray and I have fought the battle over and over - I want something done, he doesn't do it because I want it done etc. So, now our shower nurses put Ray through his hand full of exercises, I don't. He will do them for the nurses he will not do them for me. I can see where Ray would have been so much better off with an attitude change but although so many people have spoken to Ray about it he has always run his own race. Too bad eh? Sue.

Wow, Beth, it is a real roller coaster ride for you Mom. She must be such a fighter to recover from all she has gone through. Ask if there are drops you can get to put on her tongue when she is on antibiotics to stop thrush, I think I read about them somewhere. Usually you would take yoghurt in a pure form but I know she is unable to do that. I really hope that once the PEG tube is in and the NG tube is out she will be able to communicate again. You are such a support to her. (((hugs))) from both of you from Sue.

Contrary-wise, you are not a stroke-addled survivor Dean. Cannot help you with the other issues but can provide whatever encouragement you need. I am just a homebody with a stroke affected husband...lol. Sue.

Writing a poem would be good. I do that from time to time when other forms of expression do not seem adequate. I get depressed mid-winter, we call it the S.A.D season, when people suffer from the low light, the short days and long nights and circadian rhythmns change drastically. The answer is bright lights, warmth and comfort foods. And a purring cat and a hot chocolate help too...lol. Spring for us so I am rejuvenating here. It is a busy season though and so many changes to get used to again. Not to mention the lead up to Christmas being in the middle of the beach weather here. Thinking of you and hoping you're able to adjust and make the most of your days. remember Vitamin D too to boost your immune system (that is supposed to help). Sue.

Mike, my magic wand is out of energy too, waved it too many times lately. Picture us there, your friends here from the chat group and those who post positive thoughts and prayers. We are not exactly the white gown and halo brigade but we have your best interests at heart. We do know the suffering a caregiver goes through and have stood by the bedside of our loved one when hope was gone. You need to be made of steel to go through this, that tough titanium version, which I am sure is what a carnut like yourself is made of. (((hugs))) good buddy, from Sue.

Katrina, I just loved your blog, as you say this year's anniversary is so much better than last year's as you feel so much better in yourself. You can be so good as a mentor and role model with all you have done in your recovery. I am glad you got to talk to the freshman girls, no-one could doubt your courage and how you have made the most of your opportunities despite the set-back you have had to face. Well done you, you are a champion! Sue.

Asha, you have taught me to "go with the flow" so I guess this spate of injuries was another reminder of how important it is to just accept the situation you are in and get on with life. You are so fortunate that your hubby is such a lovely man and looks after you and kido so well. Give him a (((hug))) from all of us for looking after you in your time of need. Sue.

Hi there all. It was a nice spring morning…not sure what is happening this afternoon as the wind is back and it is a cold one from the south so I guess spring is not ready to give way to summer yet. It snowed last week on the higher peaks of the Snowy Mountains and out on the Western Plains so that explained last week’s cold snap and the way we had to pile covers back on to keep warm at night. This week we’ve had a couple of warmer days but today it seems to be getting colder as the day progresses, not warmer as it should. I am as usual doing too much. I thought when I finished the Certificate course I was doing in Pastoral Care that I would have heaps more time…not so. Winter flattened me with the bronchitis, viruses etc and then slowed me way down so now I feel as if I am running to keep up with life. There is so much to do, places to go, people to see, I feel as if I am dragging a concrete pylon through life…wait a minute, maybe that is Ray? We were just discussing lack of comprehension of a caregiver’s needs this evening in chat. How difficult it is to get “me” time and to get our needs met. I do try to take “me” time, slow down the pace of life, pace myself in what I do etc. All this is what I tell new caregivers to do, but somehow it is hard for me to do. Maybe, looking back, I have always lived life flat out and although that pace is not possible now I still try to achieve it. I can just see so much to do and want to do it NOW. Today I did an interview with a University student on community care issues, this included how I find access to care, standards of care and whether the care I get from sources such as care providers and government run programs meet my needs. Errr…nope! While this survey is aimed at people who care for someone with dementia it could equally apply to someone who cares for someone who has had strokes. There is never going to be the care we want, need and deserve, the dollar does not stretch to that from the private purse, insurance, compensation or from whatever source our money comes to buy in care. We are stuck with the level of care we have now unless we can rope in family members, church and charity groups etc to help us extend the kind and amount of care we need. That will vary according to the difficulty of caring for the person who is your care recipient. So that’s my needs – how about Ray’s needs? We are using a service provider for five hours of care a week, three shower hours and two respite hours, he goes to Daycare and I take him to church and to the meetings of the organisations we still belong to. We are way past therapy of all kinds, that happened after the strokes in 1999, 2001, 2005 and again when we attended a six week program in 2006. The last lot of rehab was after his pelvis fracture in 2008. I guess I could look into more PT and OT but with his limited short term memory would that be beneficial? It is a balancing act, his need, my needs, his therapy, my outlets, his timing (naps etc) my timing. This marriage has had a lot of stuff thrown at it over the years and it is a wonder it survives, but it does, 42 years and counting. Why? I think because we have learned to compromise, well I have. Ray has just learned to ignore me and hurtful as it can be sometimes it has been a lifesaver for him and probably explains why HE has been married for 42 years. What does not kill you makes you strong. And so we go on from day to day. Someone suggested it is like room-mates, yep, some of the time it is, sometimes in is more like conjoined twins, one body (or brain) two sets of needs. You got that joined at the hip feeling? Me too. But I’ve also got the feeling of being needed, being useful and sometimes, being right where God wants me to be.