swilkinson

Hi Cagin, good to see you blogging, that is a good way to express your feelings about what is happening, keep up with the things that are happening to your grandmother and find some help from others that have been in the same situation. As you have already found there are a lot of people to support you here and welcome you to the Blog Community.

Nancy, did you take all of this quietly? I would have done my stomp and shout act. From time to time I told Ray exactly what I thought of his behavior, how he had ruined our holiday, how I was just about fed up with my life etc. Usually finished by bursting into tears and stomping out. Although Ray was almost emotionless himself out of the corner of my eye I could see him shaking in his boots. He hated the thought that one day I might just go off somewhere and not come back and there were times when I felt close to that. Sorry this is another glitch in the system. I have a friend with an OCD child and she got helpful advice from a psychologist that helps her to rein in some of his worse behaviors. Maybe there is some way of helping Dan with impulse control? You have to have some relief from all these problems. Hope it is possible to salvage the holiday. I'll keep you in my thoughts and prayers.

I love being with my grandchildren too, unfortunately I do not see them as much as I used to. I am glad you got to play games with them, they will remember that, that you were fun to be with. Molly the dog was probably exhausted by the time you went home.

I think Ray had fits in the same way you have anxiety attacks, no rhyme or reason, on a good day or bad. The neurologist doesn't seem to be much help for you, I wish someone would come up with an answer so you could go back to more good days than bad. Sue.

Wonderful blog Asha, a happy holiday shared with your family sounds like a great idea. I have yet to go to Hawaii but it is on my bucket list. I believe it is beautiful there. Happy anniversary for 25 years. You have been given a husband who loves you and a great son and I know how much you have invested on them both. As you tell me - take time for yourself and to renew your inner strength as well. Sue.

Is this another expedition for you and Dave? Just looked at your 2013 pics in the Gallery and boy that looks like a lovely lake and a pleasant place to camp. Do hope you enjoy your time there. Sorry to hear Lesley had four days in hospital. I had pancreatitis before I had my gall bladder out, a big stone will do that, cause a blockage and the whole area inflames. Hope she is better now and with antibiotics etc can regain her health. That woman is so good for you George, she is a keeper! Enjoy your mobile home traveling and remember to blog occasionally and post pics in the Gallery so we can enjoy your travels with you. Sue.

What a great party - didn't we eat and drink and dance the night away?

Well, sounds like a good start Debbie. Learn to pace yourself. Routine plus special treats, days out balanced by days at home. It will work out well. Don't rush into big jobs, don't overload your (or Bruce's ) day. PJ's on past breakfast? not in our family. Dad's saying was :"Up and dressed girls" and we were regardless of the day, month and year. Part of Dad's past I guess. Like Mum saying: "You're home so get out of that school uniform." We all had different upbringings that brought us all to this place where we all have so much in common. Looking forward to your blogs as time goes by and you start a life that is different and fraught with possibilities. Sue.

It has been a strange week, cold and windy but no rain, very cold nights for here. I have been busy with meetings, there seem to be so many church meetings as our minister leaves at the end of September and he is trying to tie up loose ends. I think I am one of them as he seems to want me to do this, that and the other at the moment. Even asked me if I had done my homework before one of the meetings. Homework? Me? I am 67, nor 6 or 7. Please treat me like an adult not a child. I don't think he means any harm but it is still early days for me in the transition period and I am still having days when I honestly have no get up and go, other days I might be firing on all cylinders and up for anything but that is the exception, not the rule. I had lunch yesterday with a lady I am fond of but not friends with. She was a member of my Lions Club but "moved on". She also is a widow. We have a lot in common and I like to see her occasionally. But she is very different from me, knows what she wants, gets to it in good time, moves on from there. I am not like that. I am by personality a long distance runner not a sprinter, I am here for the long haul, I find it difficult to drop something and move on. I also need to tie up loose ends and leave things neat and tidy and then if I think the time is right to resign I do so. I am not as impulsive as I used to be when I was younger. Once I would get upset about something someone said and that was the end of my membership in that organisation. Now I know that losing friends as a consequence of an impulsive action is not something I want to do. I am older and wiser. And I value my friends more. And so I come to the dilemma - to change or not to change? *L* said that I should drop all the organisations I belonged to in Ray's time and decide what I needed to make MY life complete. I should join mixed groups so I had some male input into my life, preferably with younger people in it as well and frankly have a good time. What??? Obviously she doesn't know me very well. I do get the point about younger people in the group, as I've said often being in a church with an older age group does seem to mean I bury a lot of my friends but apart from that age does not matter to me. So I must admit I was a bit stunned by all of her comments. I presume she did it with my best interests at heart so I will think about it and there is no hurry to make a decision. But maybe I might have to avoid her for a while in case she wants a progress report. Today I went to a Combined Stroke Groups Morning Tea and we had great fellowship as usual with six stroke support/recovery groups present. We also had a dynamic guest speaker, a researcher into the value of wii-based therapy. I can't tell you all about it as it is still going to Clinical Trial but needless to say it sounds brilliant. They will try it firstly in local groups and then in distance based groups using the internet as a teaching tool. I loved that she said it didn't matter how long ago you stroked, you could still make progress. As far as she was concerned learning new skills was always possible. I could see the survivors sitting up and taking notice. What we all need is hope for the future and this therapy sounds useful and accessible and relatively inexpensive. Like in restraint therapy the wii is used in the affected hand with adjustment by physiotherapists and occupational therapists working on using the correct muscle groups and providing input. The progress in movement, flexibility and balance seemed to be remarkable. I wonder how long before we hear of this being used in hospitals in the rehabilitation situation? It will be a wonderfully interesting development in a system that currently needs a shakeup here as according to the speaker's figures only 6% of the stroke survivors are offered anything like adequate rehabilitation at the present time. I still feel a bit strange being at a meeting without Ray but most people seem to want me to continue with the group and assure me I am a valued member. I have made some good friends in the group and there are people I have known for a long time now and I value their input into my life and would miss seeing them if I left the group. Which also applies to the Dementia group I belong to on a casual basis, and also this group. I know in a way I am only here because of Ray's strokes but I like it here, I like being a chat host, I like being a part of the Blog Community. I have made friends here and no, I don't feel I have to move on. But is this holding me back and denying me True Happiness? Who knows? I choose to say no it doesn't. So what does my future look like if I decide not to change, not to move on? I don't think I need to worry about that do I? I think if I keep a forward motion going life will gradually change anyway, as it always seems to. And hopefully the flow will go into a quiet, peaceful and healthy place and I will go with it. And happiness will find me there.

As you know I went to a counselor four months after Ray died. I went for an hour every two weeks for six sessions. What I found was that it helped me get life in perspective. I spent the first three crying and the second three thinking so at the end of six I had an idea what to do about what had changed in my life. The counselor was Rogerian which suits me as she mostly reflected on what I said so I could hear it in someone else's voice. Anything and everything is worthwhile, worth doing, but somehow we have to set priorities and sometimes when things go wrong and get out of balance we have to reset them. You have a 50% investment in the time you spend with Dan. Some of that time you need for Nancy and her needs. Just spend some time thinking how Nancy should use her time if you were writing a reply to her blog. It was good you got to spend an hour in chat this week. Maybe next week you can interact with the others so you get the benefit of helping them as they are helping you. It is a big world and where most people are indifferent to what you are going through being part of a small group helps you feel less lonely and isolated I find. Sue.

Katrina, I just want to encourage you to keep on with life, to find things you like to do, places you have access to that make you feel good just being there, positive experiences that will make good memories for those dull, grey days of winter. I wonder do you use diet drinks or drinks with a lot of caffeine as I know both have been connected to palpitations that can feel like panic attacks. One of my SILs was taken off all such drinks and was only allowed water for a year as the doctor thought her palpitations were caused by them. It may not apply to you but it is just a thought. Keep your courage up and remember that it is true that what you will become is in God's hands and that is the safest place to be. Sue.

Fred it is always good to have something to look forward to. Enjoy your vacation and yes, I will expect a blog when you get back. Sue.

Prayers from me too. A caregiver at best is a volunteer, a volunteer who does what he/she does out of love. This behavior so goes against that principle and I honestly don't know how you keep on doing it. But so did Ray snatching any bit of sugar that he could wherever we went and then having night sweats, diarrhea etc and me having to do big clean-ups. Sometimes our menfolk are so stubborn that disasters happen and we suffer along with them. Nancy, I wish I had a magic wand and I would come right over and turn your life around and make all your dreams come true. But I am not able to do that. So who to turn to? Maybe someone in the mental health field would be my guess. Things have to change for the sake of your family and your sanity too I suspect.

I had a week with one of the nasty winter viruses around this year - this one had a headache that lasted four days with fever and a really bad throat plus a cough. Everything but the cough seems to have gone but coughing keeps me waking up and waking up keeps me thinking. Not a good thing at 3am as we all know. And it is too cold to get up and wander around the house as I can in summer so I stay in bed under the covers and hope I will get back to sleep. I have got back to the stage of wondering why I am here, what the purpose of this part of my life is. I am now a Granma but with none of my grandchildren close to me, none of my children living close to me, and it seems old friends are gone already or are sick and dying, I seem to be burying them month by month now, I have another funeral of a church buddy on Thursday. I know I can always make new friends or can I? I feel as if this is an uphill battle sometimes. I wish the friends I lost due to Ray's illness and my unavailability would come back. I know that is just wishful thinking. I have to move on from here by myself. I know I have to learn to accept that I am alone and be content with that. But sometimes that takes too much energy. So do I need to start all over again rebuilding my life?. I know from studying other widows and I have been around a lot of those in my lifetime, that none of this sounds unusual. We are all subject to death, both the slow death of the long term invalid, and I would say both Ray and Mum were in that category, and the sudden death that I have experienced with friends. There is a pattern of life, death and regrowth that surrounds us. Our own grief probably blinded us to that for a time but once we live back in the real world we see all that as a pattern our life too will follow. I think this opportunity for deep thinking is a part of the usual winter cycle, wet, cold and windy weather does not attract me out and about and so I spend a lot of time in my own company and as I keep saying - I think too much. I feel as if I need to run, out in the sun, along the beach, somewhere where there is blue sky and warmth and other people, it is like a recurring ache, that is what I want to do. I know I should have planned a holiday somewhere in northern Queensland but the budget got a bit shrunk by the trip to England last year so a trip to the Whitsunday Islands, although I would love to be there, is not on the shopping list. So what shall I do? no idea, none at all. My capacity to plan seems to be one of the casualties of the grieving process. When Ray was alive and I was a full-time caregiver I so longed to have the freedom to just get up and go and was full of ideas of trips here, there and everywhere and now I have got the time, and maybe could do some of this but have no motivation. Although I could go away for long weekends or short trips I have no-one to go with and will anywhere really be fun on my own? The benefit of the England trip was that I stayed with cousins and old friends and did not spend a lot of time alone. There are some happy days though. I love it when I have lunch out with a friend, there is pleasure in an unexpected phone call, a chat with a neighbour, a time spent in someone else's company. I may not be a part of a couple but I can still be a part of a group or a circle of friends. But logistically, in the middle of winter, with so many people sick and many of my old friends not so anxious to go out into the cold this is not the time of the year for reunions of any kind. So any plans will have to wait till summer. And summer still seems a long way off. I have thought of volunteering somewhere where there are plenty of people to talk to and maybe some laughter and maybe that is what I need to investigate in Spring. I know we have Senior Citizens Centres locally and they might provide some courses or classes in something new I would like to learn. I do need to learn new things, particularly practical things. And maybe it can be something practical like Hydroponic gardening, something new to talk to others about. As long as it is something I can set up by myself. I know I have to take up some new interests. I can't rely on others to entertain me and I need to feed my mind too. Lately I have been running out of things to tell my daughter during our weekly phone calls. "How was your week Mum?" she asks and I think it is just the usual boring stuff, just gray days, long cold nights. "What have you got planned Mum?" my daughter always asks me that. But at the moment there is really nothing to tell her. Maybe when the days get longer, lighter and warmer I can plan another trip down there. Maybe I can do all kinds of things. I should devote my thinking time to determining what they might be. But sometimes it is easier to sit here and remember the past than it is to plan for the future.

Remember the words of Rett Butler: "Frankly my dear, I don't give a damn." and use it on Dan whenever you need to.

Amazing - the Irish girl musicians also sing and dance and play on the Celtic Woman DVDs. What a blessing to have so much talent.

Take time to grieve. It is appropriate to farewell each of our loved ones, to spend time remembering the good times, to join in with other family members in mourning. I know it is also very hard as a caregiver to find that time. Find an empty space and give yourself over to the grief. It is an essential part of the healing process that is good for right now. Mike may not understand that you have to do this for your own good mental health so excuse yourself to Mike and tell him this is what you need to do. (((hugs))) from Sue.

It is always scary travelling after reports of plane accidents but I am sure the sad case of the Malaysian Airliner is a one off. Do fly, do enjoy, do reconcile with your sister if you can (but as Nancy said don't sell your soul for it). I had catheters for Ray, then when that no longer worked super absorbent Depends. Where there's a will there's a way. I am amazed at how much support there is in our Blog Community, no sooner is a problem told than all sorts of answers follow. Long may it last.

Good you are out and about again. Sounds like you enjoyed the treats and Bob did too. Make the most of your summer weather.

Nancy, you have a blog entry to remind you of this happening, one of the positives of keeping a blog. Glad this happened to Dan, it is so easy to think that the whole world has forgotten us and all we did that was special and part of our caring nature. Well, one young man has not forgotten that about Dan.

Steve you sure are still in the learning stage. It is only a week or so since the event so the brain is still in stroke mode, swollen and disorientated. It sounds like the deficits are relatively mild, I say relatively because what is just a nuisance to one person can be a disaster in the eyes of another. As a couple your roles will change, in some cases reverse and in some cases the adjustments to that will be hard for both of you. I'd like to recommend the "watch and learn" method of caregiving. The survivor is learning often by default how their body works while going through the usual anger, denial etc stages of grief at what they have lost. The caregiver needs to be on hand to help but waiting for the signals that help is required, and it will be for sure. A empathetic response is often better than a helping hand in the early stages. Find out all you can about stroke, stroke deficits and how they improve, remembering that a stroke is an emotional experience as well as a physical one. Put all future planning on hold, accept that today is it's own norm and tomorrow may or may not be better. Welcome to the Blog Community. There is a lot of hands-on experience here and we are ready to help and support you and your wife in any way we can. Sue.

Just reviving this post as I am sure we have some more from Australia and New Zealand since it was last updated. Looking forward to one day catching up on people who live close enough to visit. I plan to catch up with elizabethc in Sydney in August if only for the day, so if you live close enough to Sydney to join us please add your name to the thread. Elizabeth and I need to have the lunch we've been promising for a few years now. Sue.

First day out today after five days at home. I felt a little shaky at first but I finished up fine. I did fall asleep over the cup of tea I made myself when I got home though so guess I am still not fully recovered as yet. Lucky the cup was on the table not in my lap!