swilkinson

Oh dear, this is a hard one. I'll pray for them and also the researchers as they look for a drug that is better in every way to this one. Sue.

Yes, pace yourself, take on only those things that are important to you and don't have any expectations of what will happen just go with the flow. Last year Ray wasn't well and we didn't accept many invit ations, this year we are both well and accepted a few more and so far we are doing fine. Notes in with the Christmas cards are a good idea. I do one every year because my Mum aged 92 is frail but still alive and people need to know that. Sue.

Jillian, good attitude, a "new normal" is what you build your life back into.It is tough to do but you do it one attitude at a time. As a caregiver I have my moments even after eleven years of wanting things to change back to the way they were but it is NOT going to happen! So if I am to have a happy life I have to make it happy NOW! Sue.

I had a slow day today. I didn’t intend to, it just happened. A slow day is like those road bumps that slow you down and give you a chance to look at the scenery for a change. I meant to go see Mum, go to the dementia support group, do some shopping etc…the busy Sue day. But instead I realised the Market Day was on in the lounge area of the nursing home so went there first. I met up with two of a trio of ladies I called the three musketeers, ladies with husbands with dementia who all visited the same day. They are all widows now and had come over just to meet up for lunch. The two I encountered were delighted to see me and suggested we have morning coffee and cupcakes together; an hour stretched to almost two before I finally went to see Mum. Mum was droopy today, like a jellyfish. I went to the nurses station and asked them to put her into a wheelchair (she is two person assist) and then took her back to the fete where she met up with some of the girls who used to look after her at the Lodge, lovely to see her smile when she heard familiar voices. The aides do miss those who transfer to another section and it was good to see her flicker of recognition of a couple of them. I also took her out in the grounds for twenty minutes or so of fresh air and sunshine. She turned her head when she heard parrots in the trees and once when a car went by quite close to us. It was good to see some reactions from her as she shows very little interaction with reality now. She is not able to communicate in any way recognisable now. It is so sad, she is such a dear little thing, now so tiny and vulnerable. Then I went shopping, bought myself some lunch and had another coffee. Slowly did some browsing around. Funny how some days can be like that, no worries, no particular cares, just a day of leisurely activities. And the shopping centre was full of people feverishly shopping and that didn’t at all affect my enjoyment of the day. Ray had a finger food lunch at his Scallywags group this afternoon. This was the last meeting for the year so they had something special. The WAGS (stroke support group) party is tomorrow 11am – 4pm so there will be good food and conversation and FUN. There is always groups of women dancing too so I will join in and not worry about what I look like back view…lol. Most of our men folk have trouble just standing so dancing is not usually an option. It is a strange time, this time before Christmas in Australia. It is, the end of the working year, the end of school for some, the end of year for groups, and the final meetings. There is about six to eight weeks before most groups start up again, so anything can happen in that time. Summer has a certain insecurity about it too as in some cases by the time we get back together some people will have changed in some ways. This was our least busy week, next week is full and overflowing and the following week is too, but hopefully we will both have enough energy to see through all we have to do. I have the Christmas cards almost done so if you want me to send you one you had better send me a PM with your address…lol…before it is too late.

Lenny, it is wonderful that you and Christian have such a close relationship. I am glad he was able to have a second birthday party at your house and you both enjoyed it so much. (((hugs))) for Christian,from Sue (known as GrannySue to her friends at Kids Club).

Jeannie, at least you are thinking of healthy eating, not sitting there eating unhealthy snacks. Might I suggest you find some ways of exercising inside so that not being able to go out does not mean getting stiff and losing the fitness you have gained? Sue.

Fred, why is the angry driver yelling at the teddy bear. Is that bear rage? You make some good points about senior safety in your blog. Here because it is summer people even leave their good in the car and their windows down! Open invitation to thieves. Thank you for your timely reminder. Sue.

I think we read a book and life seems so simple. Life is complex, why we live or die? Who can tell until challenged what they are made of? Sue.

Jillian, if you are trying to sort this out a blog is a good way to do it. You have a lot on your mind, are still close to the beginning of recovery and I guess with a lot of fears pertaining to the strokes you have had. I have restless leg syndrome so I have toss and turn some nights. I do know the cause and practice relaxation techniques, pray a bit, even sing to myself which sounds funny but works sometimes. I know this is feeble in relation to what you are dealing with I am just saying you will learn to manage it in time. I know that one sleepless night does no permanent damage although I might be tired and cranky the next day. So I'll pray for more sleep for you, a release from pain and a dulling of those things that are feeding your fears. Sue.

I hate Sundays that turn out to be work days. We have been so busy that somehow this week I didn’t do enough laundry and realised that some of the clothes we needed for early in the week had not been laundered. So did a couple of loads of washing before going to church and a load when I came home and now have a full ironing basket to deal with. I did Sunday school this morning, only four little folk and a fairly complicated craft so enlisted the help of the Mums and we managed okay. All Christmas crafts this time of the year so they have a heap of work to take home with them. Finished up of course with glitter and spangles all over the place so after I came back from the church part of Sunday school I swept the hall out. Yesterday it was church fete, Trev’s birthday party and then Ray went off to the Mens dinner. The Fete worked out well, Steve “forgot” to drop Tori off so I took Lucas who is very good at spending money so we gave a large contribution (lol) and came home with a lot of interesting stuff. Edie was thrilled with the earring and necklace set he bought her, especially as he picked it out, got my approval and purchased it with his own money. The lunch was nice but the restaurant was more expensive than we had thought so we were all a little short on cash for that. Still it worked out well in the end as the kids were all as good as gold, both our grandkids and the new “cousins” from Edie’s side of the family. Her Mum was sporting a nice new look, blonde and a short curly cut that really suited her. She seems a pleasant person, glad we are getting a nice “in law” family. I dropped Ray at the Men’s Dinner and my co-worker from Sunday School dropped him home which was really good of him. I often complain that I don’t get enough help so really appreciate it when someone steps forward and helps. It was nice this morning when a few of the men came up and said how good it was that Ray could be there, so a good all round result. We have reached the noisy season where the BBQ’s and parties are all outdoors, all have the stereo turned up full blast so they can hear and so can the entire neighbourhood. We suffer a lot from that here. But after a while someone rings the police about the excessive noise and a patrol car comes around and the noise fades away. A hotel about a mile away has live bands outside Sunday afternoons and I can clearly hear the words on most numbers. Not songs I’d like to hum along to I might add. Now all the parties are in full swing we are experiencing some tiredness in my case and some extra confusion and disorientation in Ray’s case. This means we have minor squirmishes as he forgets what I have told him and we go into the “you said. I said” kind of arguments that never end well. So I have to be far more precise with instructions and try not to snap at him when he is obviously resisting what we need to do. On the whole it is all manageable but it is harder year by year now. This coming week is a very busy one so apart from my blog report I will probably not have a lot of input on the forums. I have chat of course but that is always a permanent marker so just work around it. I enjoy it too; it is part of the support network I cherish. No family news from outside the usual circle, I did ring one of Ray’s sisters though as I wanted to confirm some news. I need to start sending Christmas cards soon as people need to know that we are well and Mum is alive and kicking – if not fully functioning. I suppose some people still remember us, even if they don’t bother contacting us.

Dean, keep educating them and we will all benefit. :You-Rock: Sue.

Congratulations Jillian on your first blog. :You-Rock: Welcome to Blogworld, a global village in miniature. We will suport you as best we can. I am a caregiver not a survivor so you might want to go to the survivor posts and look there for answers. I am sorry this has happened to you but at least you have found a place to get support which is what this site is all about. I look forward to getting to know you better through your blogs. You will find that posting on the forums gives you more answers too. No need to be alone and scared, you have joined a great cyber family here. :welcome: Sue.

Fred, computer woes are frustrating, I had a long period of ups and downs with my computer about 18 months ago so can commiserate with you. I'm glad you are back again. Sue.

Karen, sending love back to you. I think you are a true champion, the way you think and act does you credit. You and Bill are in my prayers. Seems that list is fairly full at the moment, we've got to the age when we have a lot of friends in need of prayers. Happy Thanksgiving to you all. Sue.

Hey Denny, you certainly went through the medical woes. I did wonder what had happened to you my friend. I'm wishing you a speedy recovery and plenty of good times ahead to make up for what you have been going through. Sue.

Yo ho ho Nurse Denny! I just love that you get to pay back your wife for the care she has lavished on you! Well done both of you. Glad you are back with us in the blog community. I bet there was a lot of dusting to do to get your old blog to sparkle again. Sue.

Jeannie, so sorry to hear your car has been broken into again. When it happened to us I got paranoid for a while about where I parked it, making sure I locked it etc. All the talk of holidays such as Thanksgiving, Christmas etc is hard for those who don't have family close. I know widows who find Fathers Day stressful too. I guess you just have to make up traditions that suit you as a couple to make it special in your own way. Maybe wear red pajamas and eat chocolate for breakfast? Love your blogs, glad to see you back blogging again. Sue.

Hey Dean, maybe it is because I am the Blog Monitor here I am reading this one eh? Thank you for alerting members to other blogs you like. I know for myself on here I have read blogs over a period of five years and some of these people are like old friends and I want to be with them in their ups and downs and comment on how they are doing and support them in any way I can. For me getting to know one person well is better than reading the biography of many. Sue.

The harder you work the luckier you get. I don’t know who wrote that but it’s true, whether you are a young family, an old couple or a middle aged combination of parents and grown children there is always a lot of work to do in any household. It is Spring>Summer>Christmas season here. We don’t have Thanksgiving so as soon as our Labor Day weekend is over (second weekend in October) everyone starts planning for summer. This year it has been a little slow coming but the cicadas are singing today and the birds are playing chasing games so I guess that means it is Spring and Summer is on it’s way. Yahooooo! On Saturday I did a lot of gardening. The back yard was looking weedy and seedy (no winter snow to kill off the weeds) and so I tackled it as much as I could, weeding and watering and moving plants in their pots so they showed to their best advantage. I finally got a bromeliad flowering that isn’t red, purple or pink; I’ve got a yellow one. Okay it is not the prettiest flower in the garden but it is what I wanted. Hope it throws “pups” so I can have more flowers from it next spring. After a very tiring Saturday I was prepared for a quiet Sunday with an afternoon snooze fitted in there somewhere. Wrong again. As I was half way through preparing a simple lunch I got a phone call, my sister and her husband were about twenty minutes away and could they come here? Okay, I put on a few more vegetables and hoped the meat would stretch to feed four. Not a lot you can do with visitors that come at short notice is there? My sister is good company when she is in a good mood and fortunately Sunday was a good day. She talked for about three hours after lunch while Ray and her husband Tom nodded away in armchairs, lulled to sleep by their spouses’ voices. It was a happy visit. I’ve finally given up trying to change people. It was taken me 60 years but then maybe I am a slow learner. If people tell me white is black I will concede it is gray in a certain light. This has partly come out of behavioural management training (don’t argue if you want peace) and partly out of a mellowing as I’ve aged. I don’t have to be right all the time, I can be happy in my own mind even while someone is telling me I am wrong. It is a busy life from now on, with the parties, end-of-year happenings etc. That is okay, Ray seems relatively well and I am too so we should be able to manage. I have asked for help on a couple of the outings. Trev can’t take Ray to the church’s Men’s dinner so I will take him and my co-worker from Sunday school will keep an eye on him and bring him home for me. With another gathering I have asked if it can be at a friend’s house as I know she loves to do afternoon teas and will enjoy having the company. It is a win/win situation. I did manage to go to Dementia support on Friday and was glad I did as the mentor there occasionally gives us an insight into behavioural issues that are useful elsewhere too. He was explaining separation anxiety and how it applies to putting someone into respite and full-time care. He explained that it is little doses of absence that help. We know that don’t we, with raising our kids? Out of the room, come back, out of the house, come back, out of town, and come back. The building of trust that says: “I’ll always come back, you know that.” Of course the way dementia works can sabotage that but it still applies to a certain extent. When I explained that Ray is more and more silent now he just nodded. He knows I have handled most of what has come my way so far so he doesn’t need to pay an urgent home visit or call in a social worker to help me. Others there have more problems than I do so he will make appointments to see the people they care for and write an opinion that they can share with their doctor or other care workers. I am thankful for what I have got. I look out on a nice neat lawn as my lawn mowing man came on Saturday afternoon just as I was finishing and really gave it a good mow. He should have been here Thursday but it rained that day. He is a cheerful person and always has a bit of a joke or a funny story. I am blessed by all who come into our home to help in any way. I enjoy the interaction they supply, particularly as Ray gets quieter.

Fred, I took the risk and read it and nothing bad has happened...so far. :roflmao: Sorry for your computer woes, a new computer, a new system to learn and whole new way of doing things is a pretty intense learning experience for you to have to go through. However I am sure once you are in the drivers seat in complete control we will once again enjoy your support and encouragement and see you sense of humour in action on the forums again. Sue.

Our mentor at dementia support was talking about spontaneous recovery in regard to changes in the brain. I've had days when Mum ( aged 92) was as white as a sheet sitting with her mouth open, shallow breathing, I'd swear she was dying. Four days later, without intervention,she is as alert as a meercat, sitting up, eating, doing her mumbling, no sign of what happened. I guess brain damage can repair, occluded veins and capillaries can clear, who knows? That is where the diagnosis has to come from documented cases rather than scientific evidence I guess. Sue.

Jan it has been so long since you've blogged that we have had a change of Blog Moderator, Asha retired and it is now another job for me, so two hats, chat host and Blog Moderator. Wonderful to see you back blogging again.I have blown the dust off your old blogs so people can click on archive and take a walk down your memory lane. Sue.

Fred at our age we are slowing down. I must say I look at work for a while before I do it. Ray and I are busy with the run-up to Christmas. Imagine all the things you do in summer and all the end-of-year, holiday and Christmas events and you get an idea of how busy it is. But I just love it! Ray too has a lot of gadgets to wear or use or...most of them never used these days as he gets slower. I wheelchair him most places but like you he has the AFO and the quad stick and that enables him to walk short distances. Keep up the good work, particularly your encouragement ministry. Sue.

Keep on keeping on Dean. There needs to be a balance in care and rehab and like your therapists ours are often under-trained and spread too thin so very few survivors get all the rehabilitation they need or are entitled to. :gym: Sue.

Hmmm...do I agree or not? Too tired to reason that one out, But as usual you have given me something to think about. :You-Rock: Sue.