swilkinson

That is lovely Sandy. An older lady of my acquaintance makes those and people order sets of them for presents. So talented.

Sorry to hear you and Bob have been so sick Sandy, I hope you are over the worst of it now. I'm glad your children did help out when they came at Christmastime. Strange that Bob's sleeping suddenly became less, but as you say things do change and now you have to keep him occupied so you can get him to sleep at night. I often wonder if this sort of change could be triggered medically if the brain sometimes does it automatically.

I belong to Talking Point an English site run by their Alzheimers Society and found that helpful during Ray's journey with vascular dementia. http://forum.alzheimers.org.uk/forum.php Have a look at it , type in vascular dementia and see how many threads come up. I used to belong to an Aussie site and an American site and they were both closed down. Sue.

Vascular Dementia was what Ray was diagnosed with in 2006. He had had five strokes by then and a lot of brain damage. His dementia did slow his thought process down but we handled it okay. I learned that I could put a thought into half a dozen different ways so if he did not understand me the first time I kept rephrasing until he did. I used the same method with things I wanted him to do, ask...have a break...ask again. In the end of course the TIAs, seizures and fits predominated and the dementia was just another problem to add to the list. Persevere with your Dad, the routine is important, good food, exercise and sleep is important. Keep your cool around him as much as you can and remember to tell him how much you love and appreciate him while he can still understand the meaning behind your words.

I am not a great believer in karma as I have my faith but I can see how karma affects our lives. I have been off track for some time. I think it started when I realised that Christmas was going to be far different this year. For some reason that built up some resentment and resentment and bitterness have bad effects on our mental and physical health so I started to feel unwell and basically uneasy. I also listened to some of the wrong voices around me so went away from what I know are core values in my life. Luckily I have people in my life who are wise and they led me back. Hopefully I stay on track now. We are all signposts for others. We might be one of those signs that say "shop local", "bargains here", this way".These are useful signs that help us every day but still signs that can be ignored or overlooked. We may play a bigger part and hold signs that say: "warning - bush fires ahead" or "bridge under repair" or "detour ahead". I am able to think of a few people in my life like that, but I can switch them off if I want to and I have done in the past. Those signs often look as if they are there to spoil our fun. Who cares if the bridge is under repair if I really want to go that way, why not take a chance and if I take a chance I will get there sooner, won't I? I am surrounded by good people, some of them are God's people and some of them are good people with the wisdom born of pain. I am lucky to have a few of the latter in my life. I had a phone call from the wife of Ray's older brother. A lot of people have been telling me to get out and live my own life, she did the same but then she gave me some warning words. She said: "I know you are afraid to do this because you are afraid of the consequences." and she is right. I know the moves I make will affect others as well as myself. A new person in my life will not just be a companion but someone who has the right to say and do what they usually do, this will affect the other relationships in my life. A move to a new house will cut off my ties to a lot of other people here, where I have lived on and off since I was 17 and by moving away that will change relationships with local people. The changes I have made in my life I have made as slowly as I can. I have caught up with a friend from a long time ago and he has made a difference to the way I think. I am now thinking like the person I used to be but with the wisdom I have found in the journey I shared with Ray. I have plenty of courage usually but that seems to have deserted me for now. I want to go out and do things but frankly I am aware of the cost, the cost to myself and to others, so I am wary of change. I had a talk from my son-in-law about how a Christian woman should act as a widow. Oh dear, that sounds almost impossible to achieve and still be me. I take into account that for him it is all theory so how I live out the Bible's teachings in this modern world I do not know. But I will work on taking that into account as much as I am able to. I think he is a sign that says: "Go back, you are going the wrong way." In our blogs and forums we post and others post comments. I love our Blog Community and how encouraging and supportive they are. For those of you who are reading this and do not have a blog please start one. It doesn't have to be perfect prose or contain words of wisdom or be about traumatic events and full of drama, it can simply be a reflection of where you are today. The great diarists of the world have given us much wisdom and knowledge of times past. I remember there was a diarist who simply listed the foods he ate for meals day by day back in the sixteenth century. Not a great diary you would say? Well it is if you are a culinary expert. It should have been titled "What the doctor ate." and gives us a glimpse of what that class of people had access to. His sign probably would have said: "eat well and you will be well". It is time to sit down and ask myself: "what sort of sign am I to others?" this will vary depending on my relationship and proximity. For some now I must look as if I am doing well so maybe they see me as a sign that says "new life after death" or "building a new life is easy". Well I can tell them that nothing is easy, that all journeys have hills and heights, valleys and dusty paths that are hard slogging. I am struggling as much now as I was when I had Ray to look after. The difference is that when I was so focused on his problems I didn't have time to worry about my own. Now I do and that is not a good thing. People are right, I do need to get over it and am doing that slowly and carefully as always. This is my life and sure you can give me advice but I need to assimilate and make it part of who I am. Which brings me to another thing people are saying to me: "this is your life and only you can decide how to live it", my wise sister-in-law said that. She is right, I have to take the reins into my own hands. It is no good blaming anyone else. I did this for years when I had Ray, I often used his illness as an excuse to turn down invitations I didn't want to accept anyway and used things like lack of access for a wheelchair to say where we could and could not go. I am not proud of that. I could have been more resourceful or more direct and told them something that was closer to the truth. I could even have asked for their help. As a result I lost relationships that I valued. People do see through us and appreciate the fact that we are honest in our dealings with them. Signs, signs, everywhere are signs, as the song says, so in 2015 that is one of my resolutions, to read the signs and if I do not understand them to get some help in interpreting them. My word for the year: "laughter" is coming into my life already. Yesterday I met up with two sisters I am very fond of, I met them through one of the stroke groups I belong to. They saw me sitting talking to one of the male parishioners from my church and as they went by said: "Yahoo, go Sue!". I collapsed in laughter and my friend said: "who was that?". I didn't know the if the long answer would interest him so I said: "Oh just some of the angels God sends into my life". Thanks for reading this angels.

I remember times like that in our life journey and I guess if I looked back in my 600 or so blogs I could find it. But to say you are not alone is no comfort I know. So instead I hope January is a good month, nothing untoward, nothing breaking down, no sneaky bills coming in when they shouldn't etc. Hang in there. (((hugs))) from Sue.

Nancy, sometimes choices are dictated by our own health. It has been the case for a few of my friends. A temporary care placement for Dan isneeded urgently in your case. No-one wants the caregiver to die before the one receiving the care so do what you have to do. Just know it all comes at a HUGE price, there is no hard way, no easy way, it is all part and parcel of the same. Start looking forward not back. You cannot undo the past no matter how much you worry and rehash it, it is what it is, done and dusted. You can only go forward, dry eyed and with a determined look on your face. Life is grim sometimes. You have been marching through the desert and the canyons where the sky is cloudy but remember Nancy my girl you can only see the stars in the dark hours of the night so start looking up. The answer is already there, you just have to keep walking towards it.

Debbie, love all the family stuff you have been doing, that is what I so missed this Christmas but I know there will be other years, perhaps I might have to find an Italian family to grab on to? Congratulation Great Aunty Debbie and Great Uncle Bruce, lovely to have a part in a new life in the family. Well done to all. Love the combination of Lucas Bruce - sounds so very grown-up, won't take long to happen, time flies when you are having fun.

Hi Stessie, you are already on my friends list so I do keep up with your doin's. Happy New Year to you my friend, hope 2015 is an especially good year for you. Sue.

CONGRATULATIONS on completing the Hike. Good job. Maybe next time just tell someone in charge you are heading back?

Some falls are due to TIAs so I would think another MRI is in order to check out the possibilty that he is having TIAs now. I know the dizzyness etc can also be due to inner ear problems but has the doctor suggested he go to an ear specialist? Seems to me there are a lot of questions to answer that the medical doctor needs to pay attention to rather than saying he doesn't know what is causing it all.

Sarah, it seems there is always something new happening to the one we care for and each little problem makes the job harder. Hope you can get an appointment with an ear doctor soon, before it drives you mad.

AJ, hard not to become cynical about it all I guess. I was lucky Ray had a good neuro and other specialists who did help in some ways. From a diagnosed 2-5 years of life after strokes 2 and 3 he lived for another 14 years, not all good years I admit but I was glad to have them. In his case the strokes continued despite being on "the best medication currently available" as his neuro said. I guess more research is needed into a lot more of the side effects of stroke and one day we will have the medications or the procedures to do something to treat them and hopefully cure them.

Do you remember how it felt to be a kid on Christmas Eve? All that anticipation! I wish that I could recapture that feeling again now. "What will I get for Christmas?"is the refrain that runs through our childhood. That turns into "What will I do for Christmas?" as an adult and especially as an adult with a family, especially when the budget it tight, and now as a widow "Where will I be for Christmas?" With all my children so scattered that was a problem so I accepted an invitation to go to a friend's house and share her Christmas lunch. That is what didn't happen but the process of Christmas was an interesting one anyway. Christmas Eve was beautiful. I love the children's interpretation of Christmas at the Children and Family's service. We rally around to make sure that every child is a shepherd or an angel. I've never seen so many different toy shop interpretations of wings, small wings, big feathery wings, some like a butterfly and some fairy-like. The shepherds have crooks or a lamb and the chief shepherd, husband of our local Minister, takes them if they start swordplay. It is a chaotic welcome to the Christ Child and there is rarely a dry eye among the congregation. There are the usual hymns and our best organist played them with drums sounds and trumpet sounds and peals of bells so it was a triumph of sound. It would be nice if we had a choir but that is not a task I can help with. Christmas Day was really strange as I went to church and then with a good friend to her husband's cousins's place. We knew none of the other guests and with a cross-section of the community it was a great learning experience. The cousin who is a chef with her own catering business had a dozen or more dishes, all small portions and a good many I could not eat as I am lactose intolerant now. But there is always heaps of salad for our Christmas so plenty to fill up on. And fresh fruit is always part of the bounty. It was certainly an interesting afternoon. I was pleased I had gone as it was definitely "one for the memoirs". Then I came home and my daughter and family were already here ensconced on the verandah sipping tea so it was nice to have them here and we had a light dinner and lots of conversation. We exchange gifts but nothing great and the kids have extras that I collect during the year. I have given up on clothes as I have no idea what they like so it is cards and vouchers and whatever their favourite stores deal in. They seem to be okay with that. The adults settled down and it is a Christmas movie after dinner and an early night. The family finished up staying for four nights so they only went home yesterday. We did various things, a trip to see the movie "Paddington" which I loved, enough humor for the grown-ups to hear a chuckle go around the audience from time to time. A friend of a friend here is the voice of Paddington so that was an extra bonus. The small shops close by the theatre got some patronage as I had managed to fall out of my last pair of summer sandals so I bought another pair while I was there and the kids love looking in the cheap shops to spend a handful of pocket money in. A stroll to the water and back and then home. The idea of their pre-vacation is that they settle down after the rush that has been Christmas season for them. The Salvation Army band played three times a week in the evenings somewhere in their area for the last month or so and as my grandchildren both play cornet in the band now that was a lot of extra work for the end of a busy year. Shirley also supervised a team of women doing the gift wrapping in their local Mall, a huge one with thousands of people there each week so that was a big task. They were all very tired so a sleep-in was in order. As an early riser I have to make sure I creep quietly around the house with as little noise as possible, not easy but it allows them to get the rest they need. I have tried to sleep in but it never works for me, six hours in bed and my body says "up we get". I had had a busy program myself with the Lions Club Christmas Stocking ticket selling and the pastoral work I do in the church but I find it more energizing, I think because each event for me has a social side and as a widow I need that. It would be easy to become a recluse, to make my home into a comfortable nest and just stay here and do handwork and crafts and nothing much else. I am tempted to do that in winter but not in summer as the sunshine always calls me out and I love to be out and about and in the company of others. I took the kids to the park, more of a trip down memory lane as they are too old to play much now. Christopher always enjoys just sitting and talking while Naomi swings and climbs. It is that rare Granma and grandson time. I love my grandchildren and over the last ten years have seen less of them than I like to, but with Ray's needs to be met for eight of those years it was not always possible to even do the planned holidays so the opportunity now for me to travel alone helps to fit more visits in. My church work and other commitments and their Corps work though does mean that the visits get squeezed in where we have some spare time. I invited a friend back after church on Sunday after we had lunch out. She is on her own too so I thought she might like some company.Craig took the kids "antique shopping" not really for antiques but for a few little bits and pieces that might amuse them, it is remarkable what you can pick up in those old stores, like the old glass beads and trinket boxes beloved by Naomi. They came back with a few paper parcels that were declared "for Mum's birthday so no peeking". Cate and Shirley and I sat on the front verandah and sipped tea and watched the world go peacefully by. And now ahead of me is the summer, busy with children on vacation so the three little Adelaide children are with their mother for the next three weeks and I will be a part of their lives again. I love that. I miss all my grandchildren and love to be around them for as long as they let me be. So happy days ahead. The word I have chosen for this coming year 2015 is "laughter". Naomi gave me that on a small sign as part of her Christmas present to me so I will endeavor to find laughter in all situations and brighten up my own life and the life of others.

Molly, I hope you are okay, please post and let us know how you are. Prayers and blessings coming your way and also (((hugs))).

Hey Christina, crushing too hard on your PT, I think everyone does that...lol. Welcome to the Blog Community, you will find a lot of support here, survivors and caregivers all with different problems but a good feeling of friendship between us all. You seem to be doing well from what you have written, so I hope we get to know you better as you blog more. I am Sue, widow of Ray who I looked after for 12 years. I miss him heaps but volunteering fills my days so that is why I am still on here as a volunteer. It is my night-time now as I live in Australia but that means I have plenty of time to come on and say "welcome" to the newbies.

Sometimes those moments of realisation do blow you away. Whoever she thinks you are you are precious in her eyes.

Cagin, your Mum is your Grandmother's security. She trusts her to be with her and do what she needs to do. It is often so with those who have had a stroke or other reason for brain damage. It is a good sign in some ways but difficult for the person who is the object of this dependence. It was the same with my husband, he wanted me to stay by his side, not always something that is possible to do. I am glad you had your Aunt come to take some of the burden off your Mum, that was good. The more helpers the better it is for the main carer. Yes, the fight still goes on and she will need all the support she can get, including from you.

I do a variety of crafts and it is what I do when there is nothing I need to do. I make knee rugs as you know and there is always someone who could use one to give it to. I think Fred's suggestion is a great idea if you are allowed to have a pet. Look a various things you might like to do and pick a couple to start the New Year with is my suggestion.

I am indeed rejoicing that I made another Christmas when so many did not.

Nancy, I think it is complicated grief. Stress may be a factor but you have not mourned and now you are mourning, the loss of your Mom, the loss of the person Dan used to be, the loss of who you were back then, the loss of who you were together. I think you need counselling for that loss and any others you think you have not grieved. Grief caused me to feel disorientation, that disconnected feeling and complete exhaustion but I could not sleep.. When I went to a grief counsellor four months after Ray's death I felt just like you are feeling now. I think the solution is talking it through, a lot of talking it through as well as counselling, lots of rest and the usual: fresh foods, fresh air and some feeling that you have a choice. I used to say each morning when I got up: "Today I choose to look after Ray." That made it my choice and for some reason that made me feel better.

I can understand how mad you are at the system and this home in particular. He has another chance now but what can be done to make sure this never happens to anyone else? l guess legal action if you can afford it. It seems those without insurance are really badly treated in your area. So sorry this has happened to you and to Buck.

Never question love, it comes in surprising ways and awakens some feelings we thought we no longer had. Love is precious and families that give love give a gift worth more than gold. We have just finished Christmas Day, a strange one for me but nevertheless one in which love was once more affirmed. Cherish your family and all who love you as they cherish you. (((hugs))) from Sue.

Hi Bill, Merry Christmas to you also. Hope you and your little family have a great time together. (((hugs))) from Sue.