swilkinson

Congratulations ASHA on raising a wise child. You have been such a good example of how to overcome adversity and have continued to be an example to many of taking a spiritual path throughout your journey. You have been an example not only to your son but also to many of us here. You and your husband have raised a fine son who hopefully will also make a great contribution to the community.

Oh Sarah there is no easy way of doing this. I still have nightmares about putting Ray into care but there was no other way when he became a three person lift.. we have to do what is best for each of us. I hope you find somewhere you are happy with.

I walked into church today at Bateau Bay Anglican Church and five people lined up and gave me a hug. It felt good to be welcomed back after being away for three weeks. Some of the church people I saw last week when the care worker escorted me to the shopping centre, others I had spoken to on the phone. The lady who often sits beside me took a card out of her handbag and gave it to me apologising for forgetting to post it. It is something I have done myself so I just smiled and thanked her. Yesterday I was taken to the Combined Stroke Group morning tea and other friends did the same, hugged me, gave me cards, welcomed me back. I am not fully recovered yet but am starting to get out for a couple of hours without feeling overtired. The nursing staff were right when they said I would feel really tired for the first couple of weeks. I so grateful to those who have volunteered to drive me to one of my doctor's visits or one of the places I regularly go to. I am glad some of my friends have been willing to put their concern put into action in this way. And for those who have visited me and brightened my day. I'm glad I went to the Stroke morning tea as there was a very good guest speaker, a local neurologist who with a team of other health professionals is putting into place a system called "Telestroke" which will streamline practices with hospital admission departments so that people suspected of having a stroke will be given priority and access to a neurologist, a CT or MRI scan and blood thinners etc routinely to lower the risk of deficits. It seems so logical but has never really been available outside of city hospitals. It is fantastic that linked together by technology a neurologist or neurosurgeon could now supervise this process in smaller country hospitals where it had previously been impossible to access such a service. It will certainly make living in country areas and having a stroke much less of a risk than it has been in the past. I am not sure when I will be driving again but have to see the neurosurgeon the first week in September so that should be decided then. I am lost without a car here but with kind friends wanting to take me here and there I hopefully will not get cabin fever. On days when the weather is fine and sunny I sit on the verandah and read or simply watch the world go by. There are people walking dogs or pushing babes in strollers or just walking back from our little row of local shops so plenty to ponder. And I am willing to put my feet up and rest if that is what is required to get back to full health. Once I would have become restless and fought against this enforced rest but now I just appreciate that I have had a very dangerous operation and have come through it relatively unscathed. It would not have happened a decade ago, we have come a long way in the last ten years as far as technology is concerned. At 72 I am an older lady in the eyes of the medical profession and am thankful they agreed to do operation. A couple of days before I left hospital a man in surgeon's scrubs put his head around my curtains and said: "Mrs Wilkinson, you are a success!" and I am. No longer do I have a time bomb threatening to blow up in my brain, I now have as much chance of living to a ripe old age as everyone else. I have one more operation to be done, the thyroid, and then I will commence a whole new way of life. Hopefully I will be able to travel, see a bit more of Australia. Because of the lymphoedema international travel is in doubt so I may never get back to England or over to Canada but trains and buses and cruise ships may still be practical. I would still like to travel with a companion but with grandgirls growing up maybe they will be suitable companions. My family are much relieved by the success of the operation and my continuing recovery. I am glad I was able to come back to my own home and not have to be a burden on one of them. I love my kids and grandkids but having had to look after my parents and then Ray I know what a toll that takes on your life and I don't want that for them. So right now I am sitting here counting my blessings. Including the blessing of being back in here in my own home.

Tracy, no-one forces us to be caregivers, we do it out of love or a sense of duty. Your Stepmom and your daughter both did it out of love. I believe there is a sense in which those who give such love get it back, maybe not immediately but eventually. I have found that in the past three years as I have struggled with three serious operations I have been surrounded by people who want to pay me back, not for what I have done for them but for what they have seen me do for Ray. So keep praising your Stepmom and stand by her as you both begin your bereavement journey. (((hugs))).

Paul I still belong here for that reason. As the Blog Moderator I can be an encourager to survivors and caregivers so that no-one goes unsupported. As a former caregiver and with 13 years as the support for Ray I know both sides of the story.

My Mum used to try to get out of the car too. I think it was a miracle she never finished up in the roadway. We have compulsory seat belt laws here so I could hear the faintest click and knew what she was up to. I f I could I pulled over to the side of the road, put her seatbelt back on and told her she would not be riding in my car again. That was enough to do the trick for a few minutes and give me time to head back to her nursing home. Used to spoil the day for me though.

ASHA, life is full of frustrations and challenges and sometimes that outweighs our general contentedness. It can be harder challenges sap our energy and produces a mild case of burnout so maybe pace yourself and take some downtime as you need to. I look at this part of my life as a challenge and try to think what am I supposed to learn from this? Is there among your family and friends people who could become a small group of women you can get together with occasionally? This might be the start of the kind of support group you are looking for. I have several groups I go out to coffee with and they provide me with ideas, albeit sometimes crazy ones, to look at when I have a problem. As we age our ideas need an update and different people come into our lives whose wisdom is relevant to where we are today.

I arrived back home from hospital this afternoon. The operation to clip the aneurysm has been deemed a great success. When they said a headache for two weeks I wasn't thinking of a face ache but that is what I have. The medical team have been thrilled with the success of the operation in " an older woman". I must say I am pretty pleased myself. I will endeavour to post a longer blog at a future time. I just wanted to let you all know that our prayers were answered and that apart from heavy bruising and a little pain and discomfort I am just fine. Walking , talking and commenting on the world around me.

It is only a few days before I am off to Sydney to have the brain operation. I am not scared, my angel still has her finger on the problem spot. I am packing an assortment of bed wear keeping in mind I may not necessarily be able to pull anything over my head. I know it is a long recuperation but do not know the stages of healing. I have spoken to people who have had the operation but for most of them it was in their 40s not their 70s. The school holidays are here and Alice and Trevor have been down from Broken Hill for a few days. It is always a chaotic time with them but lovely to have the company of a lively seven year old. The Nintendo Wii was used a lot and she tried to beat me at every game we played. Mostly I gave in and allowed her the victory. We went to the local parks, had some nice walks and she and Trevor managed a couple of hours buildings and castles on one of the local beaches. We also had dinner one night with Pamela and the two boys. Tori was still in Adelaide having some extra tuition, with her major exams in four months time she felt she needed to do some catch up work. I will see her on Monday. I spend the weekend with Shirley and family two weeks ago. As usual she is a tower of strength to me. She will be by my side right up till the operation time and there when I come out of recovery. It was good to see the grandchildren, they are all so different but I love each for their positive qualities. Christopher is at University and seems to be doing well, the others range from Year One to Year Twelve. I try to keep up with what they are doing, what their interests are etc. I have not been travelling much so I am glad Trevor has decided to come to the Coast for his week with Alice each holiday. It is facing that long drive, 14 hours each way, that I admire him for. I know many would not make the effort. I am following my usual routine, that is making it much easier to find my way through the waitng days. It has been difficult at times not to worry that my future may not be as I had planned but I have promised myself to live as well as I can whatever happens. All those years of living with Ray's many disabilities have given me the courage to look at my own future with a better attitude. We can do so much more if anxiety is kept at bay. And hopefully the days ahead will be better than I am anticipating right now.

Tracy it is always good to hear from you and see into your world. Sounds like there are good and bad things about your relocation but on the whole you are happy there. Neighbors will always be a problem. The house on the west side of me was a rental for many years and some neighbors were wonderful and some I was glad to see go. Hopefully you will find some good people in your neighborhood who you will become friends with.

Tell Gary he is catching up to me, we are both 72 now. Tell him "Happy Birthday" and give him a hug from me. Yes he is a true survivor! And you are the one who made it possible. Many (((hugs))) for you my friend.

ASHA, sometimes you just have to be happy because he is happy. You can never have a 50/50 balance in a marriage, it is more like 60/40, with one or the other comprising. I wish it was true that we grow together and in some part of our marriage we do but we also need to be free to be individuals as well. He is a good man, you are a good woman, sometimes that has to be enough.

S ounds like something I would do though I do use closed toed shoes as I have dropped heavy items on my toes before now. Some products warn you to wear a mask too if you have allergies. I have used a product called ant sand which is probably something similar. My Mum used to use boiling water, also earth friendly. Good luck with future gardening.

I did read the whole blog. I guess people who make you wait just don't realise what harm they are doing. That sort of thing happens in hospital and specialist centres here too. I have overheard many people complain about patients transport issues. I guess my advice is to just take every day as it comes. I am sure your life has a purpose and maybe that is just to be a good listener. Everyone needs one of those. The scheduling system seems a problem here too, my last pre-admission clinic took five hours instead of the proposed three. Maybe medical personnel needs to be better trained in timeliness and maybe be more thoughtful of wheelchair bound patients . But that is never going to happen is it?

So true Nancy, so true.

Sarah, it is really hard when you want to do something but can't because you are a caregiver. I have been in those circumstances too. Just keep in touch and support them both as much as you can from a distance.

Prayers coming your way.

Nice to see you are still active in the kitchen. As we get older we can get less active so keep up as much activity as you can despite the back pain. The blog community is a great place to get support and share ideas.

Sarah, as you and I know we cannot always be there to help our kids. The priority is different when you are a caregiver. You want to be the one they can rely on but your circumstances make it impossible. I hope you can come to terms with that. You are a good wife and mother and a good friend to many. (((hugs))).

Nancy, our lives fall into patterns, I am never sure what is worthwhile and what is workable but it all blends in somehow. I had that kind of life with Ray in the nursing home though taking him outside somewhere we could walk with me pushing him in the wheelchair was the go not bringing him home. I missed that when he died. Now my pattern is driven by my various ailments. But on the way we influence other lives and for me that is where the life well lived comes from. (((hugs)))

Looks like my operation date might be mid-July. About five weeks after the Pre-admission Clinic. Fingers toes and eyes crossed...lol.

If no news was good news life would be so wonderful. I have paperwork in for both operations in two different Sydney hospitals now with a pre-admission interview on the 11th for the aneurysm clipping operation. I know you all know the importance of this operation as it will save me having a stroke, at least that is the way I am choosing to look at it. With a good surgeon and a lot of prayers it should be fine. I am not looking forward to it but I am no longer afraid of it. We have just had the first really cold days for the start of winter, record snowfalls for May in some of our little towns near the Southern Alps. It is time to turn out the cupboards and find the winter woollies. I might need to get out scarves and gloves too if yesterday was anything to go by. I will probably need to look out bedsocks and shawls to wear during my convalescence. Not counting on anything at the moment as I will find out more details at the next couple of meetings. Anyway no harm in getting ready for whatever the future holds. I am not as active since my last hospitalisation for the infection in my affected leg, it seems like my lymphoedema increased in my affected leg so that seems more log-like than before. I am also conscious that I walk differently now swinging my left leg more slowly than my right and I am doing shorter distances too. It is nuisance more than anything but does affect my confidence. I find stairs are a challenge too and I am mostly walking down them sideways with my back to the rails. A bit awkward but hey! I am still on my feet and that is the main thing. Apart from that there is still a lot to enjoy in my life, morning tea or lunch out with various members of my widow friends groups, church meetings, craft, Lions and other activities. I like a variety of things to do and mostly enjoy some activity each day. I am more tired than I used to be, after 2.30pm I find myself wanting to head for home or find somewhere to sit with my legs propped up. This has been coming on slowly but I certainly know the difference that losing the lymph nodes made to my overall health and wellbeing. I have finally got rid of the chest infection, had it for almost four weeks. I am sleeping better now. The short days means I try to fit gardening in after lunch. There is not a lot to do except keeping things tidy but with no rain for four weeks I have been watering a couple of hours each week. I had three different chrysanthemums flower just before Mother's Day which was a surprise. Shirley and family came down for Mother's Day lunch and and brought me another chrysanthemum which can be potted up once the flowering is over. I also have five different bromiliads in bloom so that was a beautiful surprise too. I have always enjoyed pottering in the garden. The herbs are finished though, I will renew them in Spring. I am not sure how the next few months will go, Trev would love me to go out to Broken Hill to stay with him for a week as I usually do at this time, last year I was there for my birthday, but I can't go anywhere right now. I am glad Ray can't see me like this. I still "see" him here in my mind's eye. Funny how that happens for a long time after they have gone. Those 44 years were the major part of my life. Despite my efforts to live a full and satisfying life the loneliness is still a major factor. No way to overcome that. So that is my whinge for today. Not exactly a pity party, just a blog about the uncertainty of my present life.

Sarah, you are a champion caregiver. Maybe a special brunch out at a casino? Whatever you feel is a way of marking this milestone. Ray and I did 13 years from the stroke that forced our retirement, me to look after him but his first stroke was in 1990 so 22 years prior to his passing. I have happy and sad memories of those years. But is is half of our married life so worthy of remembrance.

Nancy, once you get over the embarrassment of seeing and hearing your person in a demented state, and being expected to take responsibility for that everything else becomes easier. I especially learned that with Mum and her weird behaviour. So hold your head up high, plaster a smile on your face and visit as often as you can. Really Dan is their problem now. It is all care, no responsibility. Here we call the situation you are in and I was in "separated due to ill health" and that is exactly what it. is, without the dementia you would be living a different life. So smile girlfriend, you got this.

May be having the brain operation soon. I am scared stiff but it has to happen. Just hope I become through it okay. Can I do this? I've been through a lot in my life and somehow have managed to come through okay.