swilkinson

Thank you Lenny for adding your blog to my list of good things for today. :yay: Congratulations on all your step by step achievements. :happydance: :happydance: :happydance: Sue.

Debbie, take off the Superwoman cloak and put on the lipstick it is time for a night out. You work so hard to look after Bruce and if you are not careful will lose sight of your own goals and aspirations. I am so glad you got the scooter and Bruce is capable of driving it, it will make such a difference to your life through winter. I'd forgotten some of the seasonal backgrounds are a problem. As soon as a seasonal screen appears I go back to my blue and white favourite again. Keep on blogging and commenting on the blogs when you can we all need so much encouragement to keep going with the day to day tasks, as you know there are far too many things to do every day. Sue.

Beth, I admire your patient coping with all that is going on. I have never had to do the things you are doing for your Mom. Ray has always been able to eat, even if at first it was pureed foods and still I cut his meals up for him. I wish I had a Good Caregiver's Award to send to you. There would be a few people here who would get one from me, well quite a few. Hang in there, the NG tube will come out eventually and then you can give your Mum a smile and she will smile back. You are a wonderful woman in the way you care for her and I know she must appreciate that. Sue.

Wow, Ruth, we went on a trip to a historical house a few years ago that was a similar marathon, nowhere really wheelchair accessible, even the bathrooms had steps! But like you we enjoyed the day out. I am glad you are finding ways to keep yourself and William busy attempting new things. Like you I am sad when I recall some memories from the past and Ray does not remember them. Now I am memory custodian for us both. Finding something suitable to eat is a problem for me with Ray too. Crab nachos and key lime pie sounds like a wonderful idea. Ordering something you don't have everyday is what makes a meal out special. Good for you! Sue.

Leah, if a (((HUG))) will help I'll send you dozens. Sue. :forgive_me?:

Hi Beth, so glad you got started again. As I said I am NOT a technical person so if I did actually help that is great. Sorry to hear you haven't solved your Mum's problems yet. I commend you for the way you work though, you are a champion. Yep, it is pretty nasty cleaning someone up who is being sick. I am only just able to hold it in just long enough to clean Ray up sometimes when that has happened. Get all the help you can to make your Mom as comfortable as you can. Caregiving can be tough over a long period and you really do need to pace yourself. Sue.

We all have pet hates, things we really hate to do and so we moan and groan and whine until that job we hate so much is finished. Mine at the moment is changing the beds, stripping them down, putting on new fresh sheets etc and then laundering the old ones. I just hate it, don’t know why except perhaps it is because we no longer share the one bed. Did your mother say: “If you want to share his bed, you better marry him first?” Mine did. So maybe not sharing a bed is still a worry for me. It is now some years since we changed from one double bed to two single beds. The new ones have thick supportive mattresses. The frames are strong, solid wood and the whole ensemble is very heavy. So at the end of the process, making two of them, I feel as if I have wrestled with an alligator and come off second best. My mother hated cooking. At 80 she stopped. Maybe it was the dementia or her age, or none of the above but she just stopped. My poor old Dad who had cancer, and was on killer chemo treatment for that, had to take over the kitchen. He got a system going whereby he cooked heaps and they had it for four days. A beef casserole might be fine on day one but by day four it was really bad nutritionally and not good at all in the peak summer season but all he could manage. I used to take up meals when I could so he didn’t have to cook all the time. I know some people hate shopping but I find it therapeutic. It can be one of our best things to do as it is half social time. Today we saw people from every part of our lives, so we’d walk a little way then stop and talk. Don’t you just hate those people who block the aisle, standing with a trolley side by side? That was me today. And we had lunch with my “boss” at Kids Club as the eating area was crowded and we offered to share our table with him. It was nice to just chat casually as we ate. While Ray had a haircut I caught up with an older friend and we finally had that coffee we’d promised for so long, it was only for twenty minutes but I think it was a break for both of us. She looks after her son who is forty and has had stokes and now has seizures. He is the loveliest guy but must be hard to live with. She seems to cope but she is past seventy and it is a big responsibility for her especially as he often has them late at night and she has to phone the ambulance and follow him to the nearest hospital at a time when an older lady shouldn’t really be out alone. I caught up with a lady I became friends with in the Dementia Lodge where Mum was before crossing the road to the nursing home. H. is a widow now, of the four of us that formed a little friendship group I am the only one who isn’t. H’s husband died last year. She had a heart bypass shortly afterwards. She says she is fine now, just unmotivated. After so many years of caregiving it is not easy to go back to a single, self-regulated life. I hadn’t seen her for a while so she told me who had died in the Lodge in the past month. For a facility with a population of only 25, the average is four a month. Only a few like Mum live on for years after entry. I saw Mum today. The activity was a program of music and exercise, it is done Tuesday and Thursday mornings so it is often on while I am there. The aids who do it are not trained musically so it has some funny moments as they try to sing and dance at the same time. The residents join in to different degrees. The sounds of their attempts make me smile too. I am not laughing at them, just enjoying being there with them. And I do enjoy the visits some days. With so much mental and physical illness you would think it would be all serious but these are wonderful human beings who although struck down by the terrible illness “dementia”, are still making the best of their remaining days with the help of family, friends and a caring staff. It is sunny today, overcast this morning but fine and sunny now. It is spring, the birds are singing, well screeching actually as they are parrots, but never-the-less it is a day to be happy to be alive.

Beth, a UTI takes so much out of you even when you are otherwise healthy so I can imagine the havoc it is playing with your mom's body right now. It will be better once the infections are under control for sure. You are taking such good care of your mom and that is admirable, do remember to look after yourself too. Sue.

Sheryl, you are a champion! To do so much and to triumph at the end - hurray for you! Ray and I used to go on bus trips, both touring holidays and day trips but he slowed down so much it was no longer possible. Maybe with the help of friends we could have continued. God bless your sister and your friend for helping out. Sue.

What a great event for a wonderful cause. The Starlight Foundation does a lot of good here too. I am glad Tootie gets to enjoy good things in her life and you all care so much for her and about her. She is an inspiration to many. Just quietly you are too. :You-Rock: Sue.

I just reread briank’s blog “A Decision” and the reply stessie left on it. I admit that since becoming Blog Moderator I read the blogs more carefully and probably at a deeper level. This has meant I see more in them now. A blog often contains a lot of material that is open to interpretation and the physical, emotional and metaphysical impact I think depends on the perspective of the reader. So if you and I sit down and read the same blog we will see different things. As a long term caregiver it is difficult for me to “move on”. I can come to terms with something I cannot change but I can’t “move on”. Brian talks about getting himself back to being BRIAN instead of just being a STROKE SURVIVOR and I applaud him for that. It is rather like the people who come onto the site naming themselves as a stroke victim, here we say we are only a victim if we want to be, those who have survived a stroke and are working on recovery are stroke survivors for sure. But a caregiver is a caregiver until the care recipient no longer needs care. So Brian’s wife can go back to just being, wife, mother, lover and friend and does not have to be a caregiver if he no longer needs care – right? Whereas my caregiving will extend till death do us part as I know Ray will not get back to that independence that will enable me to give up on caring for him. He may go into full-time paid care one day, a SNF or something similar, but that will not end my caregiving, only change the nature of it and the amount of time I spend on it. I do try to move on wherever possible, I do reassess what I do with and for Ray and make what I would see as seasonal changes. For instance I know in winter his muscles tighten up and he has a shiver response so I do not ask him to go outside in the cold more than necessary, to pick up his belongings or to walk longer distances where he doesn’t need to. In the warmer weather it is reasonable to expect he will be able to take something from the table to the kitchen bench, to go outside on the verandah and hang a towel on the railings or walk back to the bedroom for something. So his small tasks increase in summer, decrease in winter. I also change the way I do things in summer as the tasks change, washing dries more quickly, I spend more time outside doing the gardening or yard work, less time inside filling in time unless it is raining. I love to go to the beach and at least look at the waves so I will go a different route to and from where we need to go just to be able to look at the ocean for a minute or two. I want to appreciate the area I live in not just live inside the box that is my home. I live in a beautiful area and I want to be able to see it in the same way the tourists who flock here in summer are able to. As a long term caregiver I have learned not to make too many plans, for a while I planned my summer and was devastated when those plans didn’t work out. It was a big part of my wishing life could go back to the way it had been prior to the strokes. In the end I realised that kind of thinking destroys you, prevents you from living for today and impedes your enjoyment of the day you are in. In the end I realised that I needed to simply live today’s realities. Ray had had the strokes, there was nothing more I could do, life as we had known it had gone. And so I have to change and adapt. Ray really can’t do that now, if I want things to change I have to change my attitude to it all. So instead of saying: “I do all the work around here and it is not fair!” I need to say: “I am here to enable Ray to do what he can and do those things for him that he is unable to do for himself.” That makes the most of his abilities and allows me to think of myself as an enabler rather than a domestic drudge. You will understand if I say this is what I am trying to achieve not always what I do achieve. Now I have to think about what I need to do as the season changes. It is down to the mundane, the changing of the wardrobes, winter clothes away, summer clothes out, the buying of salad goods and other summer fare, the moving of furniture especially outdoor furniture to enable our summer program to take place. The washing down of walls, changing of curtains, (spring cleaning) for just as you folks are winterizing your homes I am summerizing ours. Changes, changes, all around I see, some are neutral, some are bad but most are good for me.

Beth, if your question is about a medical matter click on Homepage and there is a button for: "Ask an expert" that will get you an answer. Questions on the site could be a PM to one of the moderators, not me as I am not an expert on anything much at all....lol. Caregivers is a place to post a question that another caregiver might reasonably know the answer to, again as I live in Australia I don't know answers about your medical or social services issues. But ask me a question about something like caregiver burnout, long term care problems etc and I will do my best to give you an answer from my own experience. Sue.

Wow, what a night of glamour! I loved your makeover and the picture of you leaning over to cuddle Logan is priceless. Stessie, all four survivors look so full of joy and LIFE!I think in a way much more alive than the much younger models. Good to see you looking so radiant. Congratulations and (((hugs))) from Sue.

Brian, this is called moving forward or moving on. A wise person learns from what has happened but does't make it the whole focus of life. Good for you. :You-Rock: Sue. Chicken for me thanks.

Julie, explain to Larry that you need some time in sunlight to strengthen your bones. Strong bones means you get more weight bearing ability and that makes the most progress come out of you exercises. Make sure you get out in the sun too, not necessarily at high noon but 10am or 4pm if you can for half an hour a day. Welcome to the world of blogging. You will create something here that you can use as a gauge, for Larry's progress and for your moods swings...lol. I know as a caregiver I can be sweet and happy, tired and cranky all in the one day...lol. I hope you have a good time expressing your feelings here and feel support as others comment on your blog. Sue. :welcome:

Yep, missed out on our local Flora Festival because it rained and as Ray is in the wheelchair rain soaked grounds are a problem for me.There is next year to look forward to. I know you have problems to overcome but keep thinking positive about what you will be doing this time next year, keep envisioning the good times ahead. (((Hugs))) from Sue.

Wow Beth, your Mom is doing so well with your help. I was very interested in your use of herbal teas for various problems as a friend of mine does that for her mum too. Anything to avoid a whole lot more medications! I think caregiving seems overwhelming to begin with but if you can find a routine that suits both parties that seems to help so much. I have been caregiving for eleven years and while the routine has varied over the years on the whole I use it to give us both security, like I mostly shop on Thursdays so Ray knows he needs his shoes on and be ready to go when I am ready. Sure saves arguments that way. I commend you on your blogging skills. Blogging has helped me so much especially in sorting out my thoughts and emotions. Sue.

Lenny, you are so right. As we go through life we have to accept that there are changes and deal with them. In order to do so we also need to change roles. I am glad you feel that you can now put some of your needs as a survivor aside and allow your caregiver wiife the extra time to see to her mother's needs. :You-Rock: I wish my husband could have realised how I needed the extra time to visit my mother in her nursing home, as it is I have had to use what should be free time to do that. Everyone is different though with different needs so we have to take that into account. Sue.

HI Beth, welcome to the world of blogging, or blogworld as I call it. It is very good to put your feelings in writing sometimes. I find it a good way of sorting things out in my mind. Concerning Linda's treatment in hospital it is too bad the staff is not multi-disciplined so they could deal with stroke as well as heart problems. It sounds like they very much just took the case without thinking about whether they could handle it or not. Such a shame as the earlier rehabilitation is started the better. I am glad there are people in the world like you that take on the hard tasks and realise that if you have been nurtured you in turn become a nurturer. Congratulations on your first blog. I look forward to the next one in your TO BE CONTINUED story. Sue.

Ruth I had Ray in water therapy after the 2005 stroke. We did it for about 15 months then one day he was done with it. I tried from time to time to talk him into going but he never wanted to. I think with him he suddenly realised that with all the effort in the world he was not getting any better. What he didn't realise was that you go backwards when you stop, in general fitness at least. See if you can find a way of making it easier on yourself, like every second day and only have special treats after a successful therapy session. Sue.

Ruth, here if you had to hire a caretaker to do jury duty the Court would have to pay the expenses so you would not be out of pocket doing your duty as a citizen. Sorry you have to have new caretakers, for me it takes a while to get them into our routine and for us to feel at home with them. You have so much to do but you always make time for William and his needs. Bravo! :You-Rock: Sue.

We’ve just had a week away staying with our daughter and her family. She and her husband only worked mornings while we were there as they had some time up and with a job where they work from home or office (they are Captains in charge of an area for the Salvation Army) they were able to spend some time with us. The weather was nice, spring-like and sunny for a change. We had walks and a picnic by the Lake and did some shopping and had a night out. It was all low key and I found it very relaxing. I am the champion at selling junk (well, precious pre-loved treasures) at the Market Day so managed to turn what little I had into a $45 profit. All those years of selling Tupperware in the ‘80s did sharpen my sales skills. We did have trouble with their bathroom with a narrow, glassed-in shower and a large bench to put in it. I became a contortionist trying to wash Ray thoroughly and will be glad to be able to shower him tomorrow in his purpose built shower room. Ray can be grumpy and uncooperative when he feels insecure so it was no pleasure to either of us to try and cope in was so obviously not disabled friendly. But as it is a rented house I guess that is not changeable. Being with the grandchildren is such a treat, they love Ray just the way he is having really known him no other way. To them he is just “Pa”. They have never known him to be other than slow on his feet or being pushed in a wheelchair. I wish some days I could erase the memories of how he used to be “before”. Naomi wanted desperately to push Pa in the wheelchair but can’t see over Pa’s head so we considered her too dangerous. The kids have a lot of electronic toys but put the bowling onto the Wii so Pa could join in a game or two. They did delight in out-scoring us of course. Naomi still loves me to read to her, so I did that and she and I colored in and drew pictures and did all that stuff that delights small girls. Her brother, being ten, teases her quite a bit. I know it is good for her but really riles her up! They are so “normal” it made me laugh sometimes. We change to daylight saving on Sunday, which moves my chat time to 11am Wednesday morning. I just hope I remember and don’t sit there wondering where you all are. I love the longer days so will not complain. Mind you I am wondering if spring has decided not to stay as it is chilly again tonight and we had snow falling down south today. There was even a little hail this afternoon here, could well have been snow by the way the temperature dropped suddenly. Ray enjoyed the chicken chowder for dinner tonight. I do enjoy meals at our daughters house as her husband is an excellent cook but there is something about the way the food you cook yourself tastes, those herbs and spices, the finishing touches that tell me there is no place like home, no meal like a home-cooked meal. I am having trouble with the showering, dressing, insulin, medication preparation etc in the morning routine. It seems the first hour and a half in the morning is completely devoted to Ray. I know it sounds petty but I really wish I had time to at least see my face in a mirror once in a while. The other day we went shopping and I realised as I passed a shop window that my hair was parted in the wrong place. I must have done it quickly and I hated that I looked out of balance somehow. It is really hard sometimes not to be able to have a quiet time of a morning just every now and again and really ease into the morning instead of diving out of bed when the alarm goes off and diving into the day. The shower nurse will be here again on Friday so after eight days of showering Ray I will have a dry feet day. Have to be thankful for small mercies eh?