swilkinson

Yahoo! What marvellous news - back to work! I am so pleased for you Sheryl. And particulalry that you still remember the work and feel at home with your colleagues again. What improves one aspect of your life improves ALL aspects of your life. Thanks for the tip about Windows7, I will try to remember what you said and pass it on if I think anyone needs the information. Sue.

Beth, you do regret every lost memory, every misunderstood word, every face that is no longer familiar to your loved one. As you say dementia not a normal ageing brain but once you have accepted that you just go on. Rregrets were always my big thing, Ray forgot something and I'd think "but last week he could..." As caregivers our biggest battle is toward acceptance, you can live in denial or see things the way they really are. Our family and friends can chose to deny, we have to live with the reality of the situation. (((hugss))) from Sue.

Leah, none of us are going through what you personally are going through and you vent, rant, rave, cry all you want. We are here to be that shoulder to lean on when you need it. I had my Dad here for the last four months of his struggle with cancer but it is just that you don't want to lose them. With your husband it is as if you are losing your life too. I know how I feel about Ray and that is as if what happens to him happens to me. We love you here and if prayers are helping a lot are coming your way. Oh and you are officially (((hugged))). Sue.

I think the same Asha, Gandhi put a lot of years into what happened before the campaign so in our lives we do a lot of groundwork before we become the person we are today. I do see that the way we have grown and matured and the friends we have and the people we are we can attribute to what we have been through since Ray had the strokes and that changed our lives. I am okay all the time I concentrate on what I have to do and don't pause to envy those around me that seem to live life without any stress. I'm still learning acceptance again I guess. Sue.

The past week has been one of frustration on many fronts. I lost the internet for a week, partly due to my Telco who claimed it was my modem (also true) and the person who sold me the WRONG modem. Lots of days of trying to sort out the problem and the solution finally came when Trevor once again got his old computer up and functioning and here I am again on a dinosaur when I need to email, blog etc. Ray has regressed not progressed this week with the sudden appearance of spasticity in his left arm and hand. The doctor says it is the volume of brain damage now as the cell death goes further towards the brain stem than before. Small vessels disease and diabetes out of control has made the problem worse. I will work on his arm and will see if I can find a privately funded OT to work on the problem of hand and arm exercises that I can do with him. I am still sorting paperwork. This week I sent off hand-written letters to those few cousins that still keep in touch with Ray at Christmas time. I thought I would tell them now that Ray is going into care rather than have them sad when they should be happy. I wrote a few letters, had a cry, wrote some more – the reality of it all is still hard to take in. I went to dinner with friends one night last week and went to the Lions dinner this week. I am still trying to come to terms with the fact that whatever I do I do alone. It seems as if life makes no real sense at the moment. I think I am just going through the motions, doing what has to be done, waiting for that “something” that will wake me up out of what seems like a bad dream. It is like the bad strokes all over again, only this time without the homecoming to look forward to. I went to the Family support group at Mum’s facility yesterday. I go because I can catch up with the widows who go there who I know from Mum’s time in the Lodge. Only five of us this week and I was the only caregiver who has two people in care. It is good to have the old friends there but it would be better in a way if I had others who could relate to where I am right now. Even in the Dementia care group it is mainly daughters looking after parents rather than wives who look after husbands so there is no real peer group support for me. I really missed chatting on Facebook and my reading and posting on Strokenet. The phone calls help dispel some of the loneliness, reading and beading distracts but reaching out to others whether in comments on posts, chatting online or just reading what others are going through and how they are handling it is a valid way of dissipating some of the stress for me. I can tell myself : “I am not alone in this, so many people are going through something similar.” I did something yesterday that pulled me up sharp. I didn’t come home to get Lucas off the bus. I was in the middle of stressing bout Ray’s spasticity and had gone to find the nurse to discuss it with and the time slipped away. Luckily my neighbour over the road who has a child who also comes home on the bus took him to play in her yard. I usually do have him for an hour on Wednesday afternoons but my panicky brain just tossed that information in light of the more vexing one of what is happening to Ray. This made me aware of how our world shrinks down to coping with one major event when we need to be looking at the whole picture. I HAVE to get my brain into gear and clean up the house, clean out the rubbish and take some time to think about my future. I need to keep up with what is happening to Mum, her summer clothes need reviewing too and I haven’t done that yet. I need to buy summer shorts and night attire for Ray. Summer is going to come whether I have my act together or not! I need to summerize the yard too, repot plants, redesign some of the front garden area to make it a bit tidier and get on with my yard work. I didn’t think life would get busier with Ray in care, I thought it would be easier.

Debbie, ocean walks and Farmers Markets - what a wonderful combination. A good walk means a good appetite and a good nights sleep. Glad my computer is back on line and I am able to read your blogs again. Sue.

Jeannie, loved the way Carl organized the quilts, your man is a treasure. You are both hard workers for sure. I was sorry your trip home was so slowed down, roadworks world-wide make travelling more of a hazard than a pleasure. You and Carl amaze me with your generosity and charitable hearts, it is a blessing to know you. Sue.

Julie, rejoice in every little bit of improvement and build on it at home as much as you can. I don't have to worry about standing Ray up now as he is either in a wheelchair or on the bed now when I visit. I have seen him walk, not a pretty sight, a few steps, paused, urged on, a few steps, wobble and turn for his chair. So keep Larry on his feet as long as you are able to. Sue.

Yey! Jeannie, you are an inspiration. I must clean out, clean up and renovate - well maybe not all at once. I hope you enjoy your excursion and the auction raises a lot of funds to lend a helping hand to those who need it. Go on doing the good work and enjoy those fall days. Sue.

Ruth, I am out of the loop as my internet is down, probably cable problems. I will follow it on Trve's computer till mine is fixed. Now i am looking at options with Ray I am wondering whether these will be my thoughts down the track. (((hugs))) from Sue.

Debbie, you can do the compassionate friend thing for a while but remember as you tell me "know when enough is enough". (((hugs))) from Sue.

Lenny, a thoughtful and helpful blog as usual. I hope people are reading it and getting the tips and using them. Keep up the good work. Sue.

Julie, when a tragedy like that hits a nation, here as there, we mourn for so many strangers we will never have the chance to meet. Sue.

No lunch for me today, I drop an older couple after church and they lingered and so I got there just as the first course was finishing (11.50am) so I guess they eat earlier on Sundays. I did get a cup of tea. Ray's meal was not cut up so I did that and he had a normal serve of dessert, apple pie, cream and ice cream so maybe not down as a diabetic for weekends.He got second serving of ice cream later as that was part of afternoon tea (served at 2pm) in the lounge room where an organist was playing old songs. I shouldn't expect perfection but wasn't surprised when Ray went to take a piece of cake and I said he was diabetic so he swore at me. In Ray high sugar = bad temper. I'll have tomorrow off as I have a heap of paperwork to chase and go again on Tuesday. I might settle for three or four visits a week further down the track. Sue.

In order to get Ray to where we want him to go and not get stuck in the system we had to take a temporary placement in another facility. I have emphasized to Ray that this is only "respite" which is true as they are only charging me respite rates (daily payment). He can be there for up to three months while we wait for a placement at the facility where Mum is. It is difficult getting used to a new place. Ray is not yet used to where his (four share) room is, where the dining room is etc. As long as the staff know who he is that is not a problem. Together we are exploring the facility. I now know how to get to two different courtyards as we used one this morning and one after lunch. Spring is going though a wintery period at the moment so we were trying to find somewhere in the sun but out of the wind. Thursday was Ray's birthday so Trev, Edie, Lucas and I took some newly printed wedding photos, nice family ones in new frames and a few bits and pieces, like new after shave lotion and for a treat a strawberry thick shake. A McDonald's thick shake is the closest thing to thickened fluids we could think of. The person in charge of birthdays did beg the staff for permission to give him cake but was refused. It was a nice thought though. The staff soon realised it was his birthday and wished him happy birthday as we passed them in the halls. Seems like they are friendly and cheerful and hopefully competent too. The physiotherapist has assessed Ray and thinks he can stabilize his walking and he was clean and dressed and looking good when we got there on Thursday. A very good start for his first full day there. If he really settles I do have the option at this stage of making this his permanent home though it is 25 minutes from here and not as close as I would like to others in the family so I would prefer him closer. It will be dependent on how long before our preferred option comes available. I definitely do not want him to be pushed around from one facility to another if I can help it. After visiting Ray on Thursday Trev and family and I went to the Floral Festival, one of my favorite outings and Lucas (aged 9) drove a mini jeep and rode a horse so proclaimed it a big success. I was happy wandering among flowers and looking at nursery stalls at what is available for spring planting. The fountains and exotic garden settings and other landscape ideas will give me something to dream about. Yesterday I had a "I don't want to go anywhere" day so I decided I would do some housework. I didn't do a lot. I had a few phone calls to make and that seemed to take a lot of time. And really this moving Ray, motivating Ray, accompanying Ray as he learns his way through the facility is almost as tiring as caregiving so I am feeling the effects of that too. I spent an hour in west coast chat talking to Sarah (hostsarah) and as usual there was only the two of us. Come on west coast caregivers, come to chat and share your story with other caregivers. It is wonderful how much better you feel when you realise others are going through the same thing and are willing to share their experiences with you and be there for you. And this time slot is designed especially for those who can chat at 8pm PST, or 11pm if you are on the east coast. I know some of you are still up then. Late in the afternoon a friend visited and was on the way to the shops so did I want to come? Not really, but I am taking whatever is offered as I want to start a new life and to do that I have to reconnect with friends. We did her two or three stops and then had coffee. It was nice sitting and talking without having to worry about the time or who was looking after Ray and did they need me for anything? I am not out of the woods yet, plenty of paperwork to do, items to return to people who have lent them to me, thank you notes to write to people who have been involved in our lives during the caring period. I have to cancel or reschedule some appointments, make arrangements for Ray to have his hair cut, see if I can buy a small television set and something to play DVDs on. I would like to get taxi vouchers set up for the wheelchair taxi so we can in the future maybe have a meal out. Today I did a split visit, 10.30am till lunchtime about noon, then went off and found somewhere to have a meal (not as nice as I expected) then back for a second hour of visiting. I met a few more staff members and filled in some more paperwork for one of the nurses. There is a lot of that even with respite. I took some crocheting this time. One of the nurses asked if it was a "worry blanket" as her daughter had a hard pregnancy and had to put her feet up a lot so her mother-in-law taught her to crochet to stop her worrying. Tomorrow I will go to church and then out to visit Ray and have lunch there for the first time. The aide I booked in with said Sunday is a good choice as it is a roast dinner. At least Ray will see what his dinner looked like before they chopped and minced it.

I have a person in my life like that. Numbers 1, 3, 5 and 6 certainly apply. So I just smile sweetly, say "I'll go make coffee" and stay away from her for a while. Sue.

Lynn, reading and listening to the waves seems a great aim for your trip to Maine. From a Doris day movie I recollect that Maine has great lobsters, maybe you could add a lobster dinner to your wish list. Glad you found a brace to reduce your ankle rolling out. A dear friend of ours is confined to a wheelchair with the same problems, she couldn't weight bear at all, so it is good to know yours is fixable. Sue.

Hi Shelley, sounds like you organized yourself well and it all worked out. Well done. When Ray had the first stroke in 1990 we were away in his car, I had not driven for a while, we were in a strange place and it was scary! Like you I just summoned up my courage and did what had to be done. Sue.

Count me in there. Without this stroke support site Ray would not have been home for so long, I would be insane and in a nice padded cell somewhere and he would have been in care since 2005. And who exactly cares anyway? Family and friends? Loved ones near and far? Not on the whole...not they don't. So if they don't like their names in the papers or on this site...tough. Whoops I think I am supposed to calm you down, not stir you up...lol. (((hugs))) from Sue.

Ruth, you are both doing so well. Keep it up. I admire your persistence. I had a laugh at the thought of you stuffing William into a wetsuit. Visions of turkeys came into my mind....lol. Sue.

Fred, when we lived out west and the temperatures went well over 100 degrees I threatened to hire a cooler van and settle inside with my bed and a pile of books and stay cool for the summer...never did it but it was often in my mind. Enjoy the cooler weather and maybe one day it will rain again. Sue.

Mike, we lived in a neighbourhood where everyone was struggling and of course my Dad particularly helped out when anyone needed extra hands to raise a frame or install a window. Unfortunately once the house is built the people huddle inside and don't look outside to see who else needs a helping hand. Just love your neighbour by helping out wherever you can. Reaching out is something we all need to do however dire our own situation. Sue.

Shelley, welcome to the blog community. I hope you find it as supportive as I have. Look forward to getting to know you better through your blogs. I like Debbie's suggestions about integrating into your new community. Every community is unique, it should be quite interesting to explore your new surrounds and find that "flavour" that makes it special. There may be somewhere you can volunteer, somewhere you can learn, somewhere you can share that special interest. Look for groups who enjoy music, looking after the environment, forming caring communities. Gardening you have already found, my idea of a brilliant way to combine exercise and food! If you can find a helping hand organisation, anywhere you work alongside other like-minded volunteers, then that might give you opportunities for forming new friendships as well. I think a lot of depression stems from the loss of who you once were, but as you need to establish a "new normal" in a new place you can actually reinvent yourself. Sue.

Fred, Ray is to have respite in one facility with a view to going into the one Mum is in. They will both be part of the same excellent care then. I know this will all work out the way it is meant to. All change is difficult and this particularly so as after twelve years of full-time caregiving it is now out of my hands. It was so hard to admit that others were right and no, I cannot do 24 hour, around-the-clock care by myself or even with Trev's help without there being another person to relieve us so we can sleep, eat, have a shower. That is what around-the-clock care does in a nursing home, provide staff who work and go home again, a caregiver cannot do that. Sue.