swilkinson

We sympathise and look forward to your return Fred.

Debbie, I love the way you plan for now and a little way ahead. We are alike in that. I also love that you allowed Bruce to talk about the stroke and didn't get into a blame game. He is doing well, I know there are other things you would like him to do but that may still happen. Have good week and ENJOY the season as it changes. Sue.

Welcome Cheryl, you have started an exciting project as a blog helps you in sorting out your troubles, finding support and information and venting so you feel better. Tell us more about your stroke journey and feel free to write whatever you need to write as often as you need to write it. Sue.

Rambling on is an accepted part of blogging, it clears your mind and hopefully helps you sleep. I have done 2am blogs and got so tired I have had trouble rereading them and deleted them. Maybe I should have kept them in draft form and rewritten them in the morning whaen I had had extra sleep. Thank you for what you did for your Mum, there was no excuse for turning down your request and I am glad you got an apology for their churlishness. It may make a difference to how they treat the next person who asks for something extra special for their loved one. Thank you for looking after your Mum the way you do, maybe she doesn't think to thank you but you are doing a wonderful job of being that helpful presence all people in that situaion need. Sue.

I am out of chocolate! I don't buy much as I know I will eat it,I try not to do it all in one go though. Sometimes you just need to have thoses excesses to fell you REALLY had a treat.

Lenny, you always have such great ideas, thank you for posting these exercises. I hope by reading this other survivors learn to do them and make the profgress you have made. Sue.

I have finally ( I think) found a more peaceful place. I went to the old support group at Mum's nursing home and spoke about beng a widow and did not cry. I think that is progress. I think going to the grief counselling has really helped. I can now articulate what I feel and not get choked up. It was good to experience that today. One dear lady whose husband died about the same time as Ray still sits with a handkerchief to her face and cries for the hour. She is older and is lost without him. Her family want her to sell her house and move closer to them and she is so sad about that, but feels she has to do what they want her to in order to get their support. I am finding it easier to take whatever invitations come my way so I have had a few meals out lately, mainly lunches out with other widows of which there are plenty in my church. This has given me the means of forming a new friendship base. I don't think it is a sign that my life is improving so much as it is a sign I am getting stronger, more able to cope. I am crying less and less things seem to trigger the tears now thank goodness. I think the grief counselling is helping me to sort my life out more easily also. I can "see" something plainer when someone else puts it into words for me. On my own it is very easy for me to get stuck on one particular item and not move on. And I think this stage of my grief is about slowly edging forward. The direction is still hazy. I know there are still many things I would like to do. I should maybe write a list, put it somewhere safe and look at it in six months time when I might be strong enough to start setting goals. I am starting to claim back my place in the house. Ray left from here in June 2011 to go into hospital, came home for a day in August 2011, fell down, I called the ambulance and after a lengthy examination he was taken back into hospital and some weeks later transferred into a nursing home. He died on 19th September 2012. That means I have been on my own here coming up for two years in June so it is not just six months ago as it would have been had he been home here when he died. I still miss Ray terribly but I am not so wishing for our life together to continue, certainly not the way it was in the last few months of his life. It is hard to make changes. I go shopping for new curtains and come back empty handed. I do not really want to make changes, this is "our home". It is the house that Ray built onto three times. Our children were not raised here as we were away in the country for 10 1/2 years but this is the house we extended to fit in three teenagers. This is the place they went from when they got married. It is special to me. The furniture was adapted to suit Ray, so he could come home in a wheelchair. The furniture was moved to accommodate the wheelchair so I guess I could decide whether I want to make some changes to the way things are arranged. But basically I love this place which was home to Ray and Sue and the kids. Some days I still feel sad, abandoned and bereft, that is inevitable. I know life as I had known it for more than 44 years ended when Ray died. But some days I feel more energised than I have for a while and that is a good thing. I just have to try and look for the positives in life. I have to somehow make sense of those 44 years, remember the good times, downplay the bad times. I need to get some perspective on what being "Sue alone" means. I have become a member of a site for widow and widowers and that is helping. I know that when I feel..... that is normal at this stage of my bereavement. It has taken a while to get to this point though. It was six months yesterday since Ray died, four months today since Mum died. I have only just come to the realisation, six months out, that the past cannot dictate the future. I cannot live in the past, it is gone. I love my husband and always will but to sit here saying I cannot do a thing because Ray would not like it is ludicrous. If I don't do it and do say it is because I don't want to then that is more honest and I need to say that. There are some great people on here and I will be staying for a while longer but one day it will be time to move on. As you all know I love the Blog Community and have learned so much from you all. Sometimes I need to read through the blog a few times to see all it has to offer. I love Asha's blog and the blogs of the caregivers who meet in chat and have become such a big part of my world. I really wish I knew how to let everyone know what a wonderful relief it is to chat to someone who REALLY understands what you are talking about and yes, can tell them all the facts, pleasant and gross, without them leaving the room. You are all a part of the best site on the web, no false modesty needed, Strokenet rocks! It has helped me so much to make sense of my world pre-stroke, during the stroke journey and now that that journey is completed. It is good that others can have imput into our lives, that strengthens us. But ultimately we have to live it out ourselves and that can be lonely.

Jamie, live life to the best of your ability. Don't worry about how long you live, just have fun doing it. The doctor who refused to fill in my life insurance forms to increase my life insurance because I was a bit overweight died aged 60 and I am 65 now. What can you say about that? Sue.

I really think leave him to the professionals. He doesn't respond to you so take yourself out of the picture. You can always just visit the staff and get a report without seeing him. I had to do that for one of Ray's hospital stays when all he wanted to do was go home, not do the work required to come home. I don't know anything about the medical side of what he is going through. I always found Ray's long (2 1/2 hour) seizures confusing, he was marked "non-responsive" but I could get him out of it by using the pressure points on his feet. I don't know if that is possible with this semi-coma. I guess you also need to look to the future, this may not be a one off, what do you want to do in the case of a series of "next times". (((hugs))) and prayers. Sue.

One of Mum's friends at the Dementia Lodge used to count to ten, over and over and measure cloth lengths with her hand. She had started work in a clothing factory so it was put down as regression back to her early working life. Dan's sounds like a return to work. My supervisor often called out invoice numbers when I worked in the motor industry, my first job out of school. When Mum scored 2 out of 35 in the MMSI test it was a work related guesture that got her the points. Nancy your patience astounds me. I honestly don't know how you do it, day in day out. You must have the patience of a saint. I know I would be unable to do that. The mental stress must be very high. Take care of yourself my friend. (((hugs))) from Sue.

All that is so scary, even with full cognitive powers we would have trouble dealing with it. Sue.

I have just had two different days. The special ingredient was I got to mind my grandchildren over night on Monday and Tuesday night from 3pm – 7am so I had to concertina everything else up and keep that time free. With three children aged 11, 6 and 5, I need to make sure I can concentrate on them 100%. Tori is good and does oversee the two little boys but she has just come from a tiring day at school so I make sure it is me that does the real work and let her rest awhile. It was the grief counselling appointment on Monday my fourth appointment and as I am now ready for it it always surprises me that what we talk about is nothing I planned. This week's big issue was the death of my father. In December 1999 I had Mum and Dad with me, put them in for some respite so I could get through Christmas. Dad had a fall in the shower at the nursing home/hostel and shattered his left side and died five days later. I did the wrong thing and took Mum back home thinking I could comfort her. I did the funeral planning, arranged the catering, even read the eulogy. It was traumatic for all of us and I never had time to mourn Dad's death as I still had Mum and Ray to look after. In a way that is adding to my grieving now so I am glad we are working on that at last. I think the counselling is removing some of the roadblocks I had erected in my life, I had erected barriers for good reason, it is one of the ways caregivers cope, to say “yes” to this, and “no” to that, to limit what has to be done rather than do everything the world expects us to do. Now as a widow I need to dismantle some of those barriers and return to where I would have been if none of this had happened. I am a single person now and I need to act the way a single person acts. Or as close as I can get to being that way. Back to the grandchilden. On Monday they were dropped off here and we had an outside afternoon. I have a trampoline and a swing out in the backyard, a sandpit on the front verandah and various ride-on toys so there is plenty to do. The little ones love to water the plants too so little watering cans make good water play. Tori has an iPod and bops to her own music, sits out in the sun and enjoys being here, The little boys are fascinated with the building which will become the house next door which is now to the framing stage. At least some of us enjoyed the banging, sawing and other noises made by tradesmen coming from the site. After dinner it is a children's video or DVD. Always a bit of a fight about that and threats about straight to bed before they decide on one. Then hopefully after that it is bath and bed. I let Tori watch another DVD if there is time as she is so much older. Of course sometimes the little boys think that is very unfair! It is probably more of a weekend style bedtime but I just hope they cope with school the next day. I know: "Naughty Granma." My DIL had to work a couple of afternoon shifts as they were switching calls to another centre and taking down the computer where she works. This spoilt her babysitting arrangements and that is why I had the children. It was good for me as it got me out of my routine and showed me a wider world as kids always do open our eyes to what we take for granted and what is important in their lives. And I am glad to be able to help her from time to time. Yesterday I had the church Friendship Club in the morning, I am a pick-up person, only one passenger this week and then it was coffee and refreshments in a park overlooking the lake at The Entrance. On a very nice autumn day it was lovely to sit outside and there was good conversation and relaxing company. These are all people in their 80s and 90s, only a couple of them still driving and up to 12 of us and a good two hours of chat and companionship. I was glad when I was asked to join the group as one of the drivers as it is an extension of my nurturing role. That afternoon I drove over and picked up my grandchildren, then stopped at a local Lagoon and silly me! told them not to go in too deep! Of course I finished off stripping the little boys down to their underwear and they splashed happily and were then joined by another little boy who goes to their school also over for a sleepover with his grandmother and of course then I stayed a couple of hours. It was a good afternoon and I guess tired us all out as they were reluctant to get out of bed this morning. I have been better at sleeping the last couple of weeks and I am pleased about that. It is almost six months since Ray died, four since Mum died and I think I am getting back to my real self. I am starting to make life decisions again. Actually forced to as my refrigerator is rattling, one of the light fittings is blinking on and off and the track on my garage door has disintegrated. Lots of expenses and lots of decisions to make. I will handle it, I have to now. The grief counsellor said I need to look at all of this as something I am doing for myself. I think that is good advice. I was sick most of last week, my old complaint bronchitis come early this year. Probably getting wet and cold the week before at the Robertson Show did not help. I didn't go to the doctor, just used a stockpile of over the counter medication that will fix the milder cases. Leave the antibiotics for winter when I really need them. If I can do it without all the better. The grief counsellor asked me to start looking to the future now. I haven't been able to do much of that while I was a caregiver but I need to now. It is hard to see what I could do that will bring my life back into balance but I will give it some thought. I am going to have to change and accept my single status. It is my “new normal”. I had a phone call from my daughter tonight. My grandson finally got his cast off (after nine weeks!) and the wire pin in his arm removed. Took two trips to the hospital to do it so exhausting for the family. Shirley said she took the day off today and even had an afternoon nap! She works so hard and I was glad she took time to relax. I need to learn how to do that too now.

I became a Lifeline (suicide line) counsellor because a friend of mine committed suicide aged 48. He was in debt and his wife had had to get a job to help out so he thought he was a failure and his whole life had been for nothing. I HATE suicide as I have had calls from the families they have left behind that broke my heart over and over while I worked for Lifeline. I wish there was a pill that would eliminate suicidal thoughts but there doesn't seem to be one. From my observation it is a slow rebuilding of life that does the trick. Maybe find a way of documenting progress, adding highlights such as holidays and special days, finding something he can suceed at. I know jigsaw puzzles saved one of our client's life, he rang us in jubilation when he succeeded in finishing one. He even went back to work because he got his confidence back. You work so hard to look after your home and your husband. Remember to look after Nancy too. I watched my granddaughter who gets to supervise her two little brothers a lot sitting on the beach yesterday, Ipod on, blissful expression on her face as she did NOTHING. That is what I mean about looking after yourself - doing nothing and enjoying it. (((hugs))) from Sue.

This has been a really bad stuff-up all round for you. Why don't all the medical departments listen to one another, surely this has happened before? The caregiver bears the brunt of all of this so I agree with Debbie, if he sleeps you sleep too. The worst aspect of my Ray changing medication was always explosive BMs so I would get set up with old sheets, plastic sheeting etc as soon as he had the first dose. Sometimes I asked for a change if the side effect went on and on. It may seem funny in the future but in the meantime go gently on yourself and on Ray as these kind of episodes can affect you for a while. (((hugs))) from Sue.

Enjoy your time away. I am going to go later in the year and catch up with some cousins, we are all 60's and 70's now so need to do it while we can still have the meet-ups. Hope you enjoy it all despite the temperature change. (((hugs))) from Sue.

Spring forward for you, fall back for me in three weeks time. Sorry to see our summer go but hoping for a loooong autumn of warm and balmy days for us here on the coast. Inland it was a long hot summer, here the summer was over 110 a few days at a time, then back to overcast weather and long days of rain. Not the sort of summer I really like. I am glad you have a hobby that works for you during the slushy days. I remember the mud that happened when heavy snow melts occurred in the south of England where I lived till I was seven, wearing what we called wellington boots to school and still gettting frozen toes and chilblains. I wouldn't swap our weather here for that. (((hugs))) for you and Lesley from Sue.

MaryJo sometimes in Ray's bad times I got so tired I howled like a dingo, only the primitive keening of loss and distress seemed to help. I must say it scared the living daylights out of Ray though. You are living through hard times when every decision is one you ought not to have to make. I used to feel at such times as if I was living in a waterless wasteland. See if you can get someone, maybe a family member or a counsellor to help you work through the decision making and the process you both have to go therough to get this problem fixed. I know if it were me I would not be able to do this alone. As usual thinking of you and praying for you. (((Hugs))) from Sue.

I'm amazed at the sudden changeover, I would have thought a lessening of the old drug and then an introduction to the new drug would be the way to go. I agree hospital is a safe place to do it but the effect on the body must surely be highly stressful. I feel sorry for Ray and for you, for him because he obviously is suffering to act out so and you because of the driving in the snow storm, pretty risky business.I am glad you were there with him when he needed you. I hope some good comes out of this for both of you. Sue.

Sandy I talked to my daughter again last night on the phone. She sounds tired. She is so busy. I wonder sometimes if we expect too much of those who minister to us, ministers, counsellors, social workers, much more than we expect of higher paid professionals. She is still ministering to those who were affected by the flooding and the tornado that occurred two weeks ago, People are only just getting back into their houses and assessing the damage and realising they need help. I have been sick the past couple of days, just a head cold, but enough to feel I need to look after myself better.It is sad that when others were sick there I was to look after them but now it is just me on my own none of that TLC is available for me. I don't want to feel needy or selfish or that life is "all about me". But I do need others to reach out to me sometimes and that is not happening right now.

Asha, you have such a "can do" attitude. I too am challenged by changes and often waste time fighting them instead of overcoming them. It was you who taught me the importance of going with the flow instead of wasting my energy fighting my way back upstream. Sue.

I have a bookmark with the wise words of an Australian saint: Mary McKillop. "Never expect perfection and bear quietly with the defects that from time to time come under your notice." That was from her days when she ran an orphanage and school for street kids and was dealing with a lot of trouble, politically and from her religious betters so I'm guessing she was doing a lot of that herself. Sue.

Sounds wonderful Terry, a bit of R&R in the midst of life. Keep some time free for a nap though as you surely can get fatigued with so much fun and family time.