swilkinson

Kristen, Ray and I went to a concert today and a lovely young soprano sang "I had a dream" from Les Mis. and I cried over that. Didn't we all have dreams? Sue.

Janice, no sense in me doing the "100 things..." list. There aren't 100 interesting things about me. Loved your list though. Sue.

Hang on! New shoes? I remember that when you went to Vegas..... Good for you, a birthday gift that will be a lasting memory. Many years ago Ray and I used to go to the occassional live show and I discovered the difference for me is the vibrations from the music that you feel in your body! A singer is so much more than someone singing the tune combined with the right words - it is the emotions that come across the footlights.. I agree take something to mop up tthose tears. Thanks for the reminder that I need to plan a few things to look forward to too. Sue.

Kris, Ray had his first stroke while we were on holidays in Queensland in 1990, his second and third in Bendigo ( they were the major ones which retired us both) in 1999 so I know what it is like to be far from home and in trouble. He has had two more since closer to home thank goodness and has some major health problems now but somehow we bounce back again. We have had amazing support over the years , often from most unexpected sources ( like our friends here at Strokenet) and although life sometimes isn't wonderful it is ALL GOOD. I think it is all about attitude and how you try to make life come back to a "new normal"again. Welcome to blogwold. We are like family , sharing each others troubles, triumphs, tears and laughter. So read all the blogs and reply as you are able to relate to what the blogger is going through. You are doing well and I loved your photos. I have only just learned to add photos after three years on the site. Call me a slow learner I guess. Cheers, new friend. Sue.

Ray and I went on a bus trip today. I thought it would be okay as it was with the church oldies ( youngest my age, oldest 93) and only for five hours so I figured Ray could last that long. The day started badly with an "accident" but not a huge clean-up so I was still okay, Ray was okay, my temper was intact. Ray was "hurrying" as best he could as he knew we were going out for the day. I did prepare some thickened drink for Ray, enough for two drinks, found an old thermos flask, a tall cup with a sipper on it, a couple of straws and packed some extra clothes in a small bag in case of more "accidents". It was almost like those days when you packed the nappy bag for the kids but I kept reminding myself that this is just part of our "new normal" and not anything to get upset about. Our shower nurse today was a woman I call the "lovely one" as "lovely" is her favourite expression. She is a real gusher but so sincere that despite any heavy clouds hanging over you she still manages to brighten your day. I wish there were more people like her. So she shooed me off to do my walk and I came back feeling so much better. Amazing what a twenty minute walk in the sunshine will do. There was not much parking at church as there was a funeral on but we managed to get a spot, and yes, the driver was more than happy to take Ray's wheelchair and so a happy day ensued. We went to a little village that specialises in gift shops, you know the kind, one step up from junk but very bright and cheerful. Ray and I shared a table with another couple for lunch and everything was fine so that was another plus for the day. With a lot of shops only open Friday till Sunday until the next school holidays it was a little quiet but that was good for the oldies with not a lot of people around and the footpaths to ourselves. Ray was very tired when we got home and went straight to have his afternoon nap but I was so pleased he had coped with the day. It makes it easier to look ahead to summer with more hope. I have been so worried about his condition and how I would cope taking him out in public etc that I think I have been overly pessimistic. Well I hope that is the case. So maybe I can accept a few invitations and take it one step at a time, one event at a time and see how he copes with eating out etc. I'm so pleased today was a small triumph. Yesterday we had our emergency respite person to look after Ray while I went to the last class of my "Carer Connections" course. I had to do that as he cannot go back to Daycare until his "health issues" have been re-assesed! She was just there as a minder as so didn't shower him or give him exercises. She did seem to connect with him though and he was okay with her being there with him. I stopped on the way home and picked up a birthday cake and a few "extras" so Trev, Ray and I had a nice dinner and dessert after. Ray was pleased with the phone calls etc he got throughout the day ( eight friends and family members remembered his birthday) so it was a happy day for him. He also got some birthday cards in the mail today which put a smile on his face. It is hard as Ray's health deteriorates to see a good life ahead, but I am sure there are plenty of good times ahead of us. I keep telling myself I can only live one day at a time, not to anticipate problems, to enjoy the little things that amuse me, to find joy in a sunny day etc. Sometimes I can take that self-talk and it makes my day bright, but sometimes it just plain rings hollow in my ears. But it is all true. I have to live as happily as I can. It may not be happy ever after but it is happy for as long as it lasts. I know some people reading my blogs will think I am a bit of a "sad sack" or maybe frequently down or depressed but really it is not like that. We all only get the one life and we each do the best we can with it. I often wish there was a road map for stroke survivors and their caregivers so we could see what is ahed. But I suspect it is better that we just be content to live one day at a time.

Marie, as a caregiver I learn a lot from the survivors, particularly the bloggers so you are helping me too. I too hope you will keep on blogging. I usually blog about something current but sometimes something from the past crops up to bite me so I include that too. It is 18 years since Ray's first stroke, only three years since his last so there is a lot of our life together that has been "stroke affected". Maybe you could tell us in your next blog how you met the love of your life? (((Hugs))) from Sue.

Trev has fired up my "old"computer. This is really old and it still has Windows 98 on it! It will however allow me to use my blog etc so I am not cut off for the duration of him fixing his other computer. I did get to sit in the sun and chat with a friend on the phone and so I do feel better. I just need to get my head around a few of the changes and make a new schedule to fit it. Sue.

I am not happy right now. Life has changed again and I am not coping with it. It is for all kinds of reasons. For example: Ray has always had "wife deafness" but now that seems to have really cut into our time. I say to Ray: "We need to go out so will you go to the toilet please." I then move off to do something else, come back, Ray is still in the chair. So I restate, he looks at me and looks back at his puzzle book. He has no understanding of the time factor or the need to make one move after another. So we are late for appointments again. Ray and I went off to church this morning and after the service we usually go across to the church hall for morning tea. This gives us a chance for little chats with other congregation members and I always enjoy it. This morning, halfway through the service I realised that we coudn't do it - Ray is on thickened fluids now. I know some of you are going to say, that's okay, just take some you prepared before with you, and maybe I will in the future. But for today I just put Ray into the car and came home. Some days I can cope, today wasn't one of them. We had our son, his wife and our three grandchildren here for dinner last night. It is Father's Day today and Ray's birthday tomorrow so they wanted to come for a visit and bring a small gift. I knew it was to be a short visit as Pam had to work last night. She only does three shifts a week but her hours are whatever no-one else wants to do. Halfway through dinner Ray started to choke. I managed to stop him before he was actually sick but I think that spoiled the meal for the rest of us. It is certainly unpleasant to watch. Now I know why some people fed their survivor or an elderly parent before the rest of the family eats, it is to avoid that "loss of appetite" that comes with watching someone else be sick. If this sounds like a vent, it is. I have gone back to the "why me, why him, it's not fair" stage for a while. I know it is not good to sit on the pity pot and I have to flush but I can honestly say that right now I am not coping real well with life. It is the new deficits, the hard work needed to maintain the same level of living and the thought that future social events etc are now probably in doubt. I would not write them off just yet but I suspect that going out to the Lions dinners, social events where there is eating and drinking involved etc is all going to be too hard to maintain for any length of time. And that fills me with sadness. Trev has taken on a few new tasks to help out but I can see that he is wanting to give up on his Dad. I guess nothing was more obvious than the fact that he didn't say: "Happy Father's Day." this morning. He went out after the others went home after dinner last night. He came home, went to bed late and was still not up when we went to church. That didn't happen in the past so I guess that is another sign that all is not well. It is harder for the adult children who live at home and witness the day-to-day struggles than for those who live at a distance. I know in his case he would rather it all went away... and I can echo that sentiment. But we all have to live with the reality of stroke survival and all the other illnesses etc that followed in Ray's case. I don't know what to advise him to do, I guess for his own mental health he may need to move out and move on now. I may not be on the computer for a few weeks. This one has some problems and has to be rebuilt and the other one I have is still waiting for my other son to install some programs. He keeps promising to get it done but doesn't get around to it. I don't know what to do about that either. After all he has family now and three little people plus a wife to please. Maybe I need to just go buy another computer or have it "fixed" by someone else. Of course Trev might get this one going within the week, or so he says. The good news is that after two days of very heavy rain the sun is out again. Makes it so much easier to get about. I have one last class and my "seven week" (four hours on Mondays) course is finished. I can't send Ray back to Daycare until he has been re-assessed but because I am doing something that is considered part of a "retraining program" I managed to get a six hour emergency aide for tomorrow. Thank goodness for Federal government programs aimed at getting caregivers back into the workplace (eventually). I think I might go out and sit in the sun. I could fill in an hour or two watching the weeds grow in my garden, right?

He's back home at last. Ray should have come home yesterday but there was a delay in processing some of the tests so he came home today instead. He is now asleep on our pull-out sofa bed. Allan is still working noisily in the bedroom on putting the shelves into the built in wardrobe so I thought the lounge bed was a better idea as it is quieter in there. I think just coming home in the car was excitement enough for Ray on his first day so I put in an apology for both of us for craft group this afternoon and our Lions Club dinner tonight. I think by the end of the week he might be feeling stronger but you all know what it is like to lay in a hospital bed for three weeks and do nothing much, it weakens you. We got an answer of a sort. The blood tests showed chronic anemia and a kind of kidney disease that is related to pernicious anemia. It has a long name and I guess when we go to the kidney specialist on 18th September he will go into what it is, how it is to be treated etc. Of course it is often associated with long-term diabetes, particularly type 1 (Ray has type 2) so I guess it was something they were looking for. It inhibits the production of red blood cells, leading to anemia. Don't know if there is any treatment or what it will be. That and the chest infection are now blamed for the falls, the weakness etc and not a TIA. Though the doctor does admit that TIAs can be associated with the condition. What a cheerful thought eh? I will plod on regardless. I got to see the social worker at last but she referred me back to my case worker, she said I needed a new assessment etc in the light of Ray's new condition. I guess I will put my name on the 14 week waiting list. She didn't have answers to any of my other questions either. I guess her chief function is nursing home placement for all the frail, aged people who come for minor surgery and as Ray has a wife/caregiver he is not her responsibility. I do feel a little let-down by the system. Ray has always had excellent care in our hospitals in the past and I guess you can put all of this indecision and less than perfect care down to the lack of staff due to the viruses hitting our population right now. There seems to be so many of them this end of winter. Mind you it is officially Spring as of yesterday. Spring!!! At last. We'll take it easy for the rest of the week, then I'll see if we can pull our life back together next week and get back to some kind of "normal". I think I need a lot of advice so will seek out some help from our stroke group etc and see if I can find out where this disease goes, what I need to look out for etc. There is always someone who has had experience in the area of kidney disease and knows what it leads to. Not that I really want to know, if you know what I mean. Sometimes ignarance Is bliss. But for now I will just enjoy NOT driving to the hospital every day and and I'll try to keep Ray warm, well-fed etc. He is entitled to a little TLC. He is so glad to be home. That is until the next "traumatic event" I guess.

Katrina I am closer to Granma age and I look back over my life a long way back now so I can see things that you can't. Having said that you are wise with that "wisdom born of pain" and you KNOW deep down in your heart that you have an advantage over those of your "friends" who have not been through what you have been through because you have been through it. Look at your hand with the eyes of love, it is still there, it still has potential, it may still be handy to hold things, to help you balance, to hold that future baby. You wouldn't want to go through life with just the one arm but some people do, or with no arms, no legs etc. You are brave and beautiful and wise, you can't have it all. So dry your tears, comb your beautiful hair and go out and participate in life. Quit hiding in your room. Hide in the library and study, hide in the gym and cheer on the team, hide in the crowds who walk around the campus. And one day quit hiding and show everyone who you are, there are people out there who need to know. As Bonnie says, after you sit on the pity pot you have to flush. (((Hugs))) from Sue.

Hi Mel, nice to see another post from you albeit a sad one in places. Yep, we lived in a small town for a while so I am aware of the pitfalls and the blessings that can bring. Enjoy your darling daughter's last year in high school, this will just fly by so record as many memories as you can. Seems as if life flies by so fast when you are older that one year ends and you race towards the end of the next one before you have time to put on the brakes! Sue.

I just loved the happy laughter, I'm guessing that was Patrick having the time of his life! And you and Brandon survived the experience, another happy "bonding" occassion. So do they say :"The family that sways together, stays together"? Sue.

Kim, you are a true inspiration. I have followed with interest your preparation for this ride and you have made it all work. Good for you. Personally I am a bit of a couch potato but admire those who love to hike, run, pedal and go for other challenges. It makes a difference to know that others are still striving to get back to their peak even if my dear old Ray is long past that stage now. Maybe I will just get on my stationary bike on the verandah and imagine I am with you on those downhill runs. Sue.

I am contending with doctors as Ray is still in hospital. After three weeks of tests, they found nothing new, no new answers when I think there should be answers to why he is blacking out and falling down. But what would I know, I am just Ray's wife and 24/7 caregiver! All caregivers are in the same catergory, there to do the work but not included in the loop by the doctors. It makes me mad too. My class this wek on my course is how to make the best use of support so I need to concentrate hard and learn some as I really do need to learn how to make the most of services, those provided by doctors included. Maybe it is all those hot blooded Irish rebels in my family tree showing up in me eh? (((Hugs))) from Sue.

Kathy, it all sounds good, the gardening and soaking up the sun. I agree with Leah, you will be fine while Barry is away - lonesome but fine! I used to be okay with Ray away, now when he is not with me I am worried! I've seen a lot of movies set at Cape Cod and think I'd like to go there one day. There are lots of places I would like to go "one day" come to think of it...lol. (((Hugs))) from Sue.

Ladies, thank you for the advice and for the concern. We all know that we do what we have to and manage when the time comes. Our equivalent of the SNF would be me putting Ray into respite and I don't want to do that right now. I want him to come home now. I agree with what you are saying about getting my health issues under control and I will make an effort to do that. I know with the warmer weather, longer days etc that that is going to be easier so I will manage. As for seeing the social worker etc I can do it another way and ask my care provider to re-asses Ray and get more care that way. I think that might work. It is all trial and error, caregiving, isn't it? And my faith does give me the strength to carry on. It is Father's Day on the 7th September and Ray's 66th birthday on 8th September so I really want him home for those two events. Sue.

I went to see Ray in hospital today and had the original heart specialist drop by. As team leader he has the say and so he told me he was discharging Ray on Monday if that was okay with me. He also said there really were no answers to what was wrong with him after all their investigations so they had decided to put him back on his old medications and send a letter to his treating doctor informing him of all that had been done. The nurse that came in after the doctors said she thought it was a good idea for Ray to go home as "you do much better at home". I know that is how I felt at the end of my long hospital stay in 1991 when I had viral pneumonia, but no-one had to look after me, I looked after myself. I want to know exactly how weak Ray is going to be and how much extra work that will mean for me. Am I okay with all of this? I think the answer is "No" as I still feel there should be some answers. No-one has a collapse, goes unconscious etc for no reason. So I think it should be investigated until there are answers. I suppose I should be grateful they have done as much as they can ( as we don't have to pay for it) but somehow I am still not satisfied. So life will go back to "normal" on Monday. I will pick Ray up after my class, about 2pm. I have two more classes to go so will either send Ray off to Daycare or apply for a carer for the day to enable me to do the last Monday. I think I have learned a lot from just being with the other 15 caregivers. But I am also more aware that no matter how much others try to help in the end we are alone with our cared for person, especially in times of crisis, in the middle of the night, when they have falls etc. No-one can be right beside us ready to help. There can be others involved in the care like my "five hours a week" professional carers, but ultimately we are on our own. I had requested an interview with a social worker as I felt I would be able to talk over our increasing care needs but was informed today that that was unlikely to happen due again to the illnesses that are keeping the hospital short staffed. I only saw the "aged concerns nurse" on the first day, never saw the occupational therapists again and Ray has had only two little walks with the physiotherapists so it has certainly been a time of minimal service. We are supposed to have seen a discharge planner too but so far she/he has not appeared. I've felt the last week or so as if I was in some kind of "never never land" where everything was a little out of kilter. Although the cough has almost gone and the fever subsided the after effects of the virus means I feel sluggish of a morning and am pushing myself to get the work done, visit Ray and come home again. I can understand Ray wanting to sleep all the time because that is how I feel too. But to sleep and not do what I have to do would result in chaos, as all caregivers know. There is no way a caregiver can slack off for the day, the work just keep mounting up. The other big job has been the moving of all our clothes etc from the old wardrobes into the front bedroom so the building of the built-in wardrobe can take place. After the cabinetmaker being here for two days I have some walls and shelves but it still has a long way to go. I know when something is tradesman built it is slower to be assembled and that is okay, but at the moment I have things stacked everywhere and somehow by Monday that has to change so Ray can fit back into the house again. He needs a clear passageway between rooms and no piles of stuff to distract him so tomorrow I will try to get some order back into the house. What a time for all of this to happen. I did manage to go out to dinner with friends last night. I was going to back out at the last minute as it was a cold wet night but managed to get myself to the restuarant and have a reasonable time. I think they did it to "cheer me up". I do still have some realtime friends and have to force myself to make the effort to keep in touch with them. It is a really big effort sometimes but without friends and supporters I would not get by. Thanks to you all for reading this. It is an emotional outlet for me just writing it all down. It truly does help me to sort things out.

Thanks all, it is so good that you actually read the blogs. I know sometimes what I write here just applies to me and what I am going through right now so I don't always expect them to make sense to others. Asha, thank you for your kind offer. I don't expect my good friends on Strokenet to ring me, you all reply to my blogs, support me in prayer etc and that is enough. I do expect my friends in real time to ring me sometimes though. I guess we just have so many things to do, all of us, that that stops us sometimes from reaching out to others. That applies to me too when caring for Ray in his current crisis is all I think about, forgetting the needs of others. (((Hugs))) from Sue.

The last few nights have been really bad for me for some reason. Maybe the anxiety which I bury quite firmly during the day comes to the surface at night when my will is no longer strong enough to defeat it. I try not to lay there going over the problems of the day, I try to pray and meditate and bring positive thoughts back into my mind but it is not easy. I had a friend who lived to be 102, when she was about 95 she discovered that being a light sleeper and waking up in the wee small hours gave her a lot more time for prayer. So she informed friends and church members that they could ring her with their problems and have a good night's sleep knowing that she was praying for them during the night. No need for us all to be awake, she told them. The EEG was done yesterday for Ray so I hope to find out if he has been having fits and if so is there a medication that will help with that. If he hasn't been having fits then I guess the black-outs are due to another reason, maybe TIAs and will have to be treated accordingly. It is all a bit of a lottery isn't it? The docs do tests from 1-5, 6-10, 11-15 etc and if you don't have any of those things well they put the problem in the too hard basket and you get to live with it, or die from it. This week I am having the built-in wardrobe fitted in our bedroom. It has lots of shelves and compartments so I am hoping it will be a place where I can not only put things but be able to easily find them again. I am replacing the other wardrobe with a linen cupboard so I can have the bedlinen etc where I can access it easily for quick bed changes - yes even at 3am I shoud be organised! The dressing table is going, it is old and long since served out it's purpose and I may need a lifter for Ray in the future so that will make the room for that. The bedroom is becoming more the sickroom now, not an idea I like but to be practical it has to happen. Ray still hasn't had any physio but he is on the list. The staff is working with low numbers as the nurses and therapists are also down with all the current viruses and so those who can work are just skimming the surface of the needs of the patients. The OTs came yesterday, did a ten minute assessment on Ray and vanished promising to get back to him if they have time during the week. I understand about the shortage but shudder at the thought of all those people who are missing out on the treatment they need because of the current batch of viruses and other illnesses that are plaguing the staff. I am in the usual predicament of having only a handful of people to turn to in the lonely hours. Being in the retirement bracket means most of our contemporaries, newly retired, are doing the round Australia trip, wintering in the sunny climes of northern Queensland and the Northern Territory or jetting off to Europe and Asia and doing the tourist thing there. That leaves me and the over eighties to talk to each other. Luckily I have a lot of nice acquaintances that I can talk to on the phone at night. But they don't drive the 45 minutes to the hospital so that leaves Ray without visitors too. I am sure a lot of folk are thinking of us, I just wish some of them would reach for the phone and give me a call occassionally. So I have been thinking of all the people I have let down in my time. I have always tried to be there for others but lately with Ray as my primary focus that has not been as possibe as it once was. Maybe I too have not reached for the phone, sent out a sympathy card or dropped by to see friends in hospital, in need or in sorrow. Maybe now is the time to mend some of those fences and get back into right relationship with some of those former friends. Or is it all too late and too hard once Ray is back in my care again? If I had a wish right now it would be to contact former friends and say: "I hope I was there for you in your hour of need."

(((Hugs))) to the "new Sherri" from Sue who is feeling "older than dirt".

Sharon, you are brave to be doing some distance driving alone but that is the only way you will do it now. Since Ray had the major strokes in 1999 I have been the sole driver and although it was daunting at first I have managed to go a lot of places I never dreamed I would. Like you I am a bit directionally challenged so we sometimes overshoot the turn off and go round the block a few times, but I say to Ray if you want to go somewhere in life you have to do it my way. I have a womens weekend for stroke caregivers coming up in November I still hope to get to. It will be okay if Ray is strong enough to go into respite, if not I will try to arrange in-home respite and just hope that plan works. It is all about determination. Sue.

Ray is still in hospital. He has almost fully recovered from the pneumonia but is still awaiting further investigation of his anemia and also waiting for an EEG which may show that he is having fits now. I know these things need to be investigated but this is turning into a very long stay to fix up a few seemingly minor problems. As a Disabled Pensioner Ray is entitled to have a free hospital stay when he needs to so it is not the money it is the fact that he is not doing any exercise etc and so will be going backwards physically and mentally. I am a bit worried about the fact that Ray has been moved onto the surgical floor and is now in a room by himself. It is a tiny room used by Mums with neonatal babes usually, the hospital is designed so certain areas can be used by different disciplines so surgery has "borrowed" four rooms from Maternity to use for people awaiting procedures. Ray needs company to keep him interested in life so it is not good for him to be alone. I feel as if I should be there with him, to keep an eye on him and keep him company. I didn't worry when he was with other people as I knew they would all keep an eye on each other. The weather has turned bitter again and we had some cold rain today. I will be glad when spring comes and I can get going in the garden. There is always plenty to do, the weeds grow up, the herringbone fern takes over the back corner and I need to have the longer, warmer days to get it all sorted out again. The wind last night knocked down a couple of my flower stands and the pots were rolled down the back yard so I had to pick them up, scoop up the excess dirt and water them to help them settle again. A bit how my life feels at the minute I guess, as if the comfortable dirt has been knocked from around my roots and I am a bit exposed to the elements. To add to my troubles my new built-in wardrobe is just about ready to erect so I needed to clean the old one out. Today I started on Ray's section and found some pathetic mementos, a couple of "traffic infringement notices" from 1996 that he had hidden under a pile of underwear, a few hundred dollars in an envelope obviously put away with some intention that his confused dementia affected mind has now forgotten. I also found a pile of old posters similar to the emails we get these days, some were a page of of wise sayings, there were illustrated poems and stories of heroic deeds. I know he used to collect them to read out at Lions meetings when that was popular in the early '90's. It is as though I am cleaning out his room in the same way I cleaned out my mother's house to place her in care. It is a mighty sad and lonely feeling. So tomorrow I will not go to church but go and sit by Ray till lunchtime. I know he needs the company. I just feel so bad about how I feel about it. As if I no longer trust him to ask for the things he needs. I am not sure how he feels as he never says. This afternoon when Trev and I were there he just snuggled down under his covers and drifted in and out of sleep. I think he uses sleeping to pass the time now. Maybe I can rally a couple of other friends to go in on Monday when I will be in class. That way I will be sure that there is someone there to cut up his lunch for him if the nurses are busy and don't do it for him. Please keep us in your prayers. I don't feel very confident about Ray being on his own. He is precious to me and I don't want anything else happening to him. Where is that big roll of cottonwool you wrap those you love in?...lol.

I like the quote:"If a thing is worth doing it is worth doing badly." In other words, as you are saying, give it a shot and if it works, it works, if it doesn't you can take that off the "to do list". I think too many people are not trying things for fear of failure. What we need to be doing is experimenting to see what is possible and what is not. Particularly the younger survivors who are still flexible and in their peak learning period. I keep a book at the bedside and read a bit if I wake during the night. Getting up is an option and coming and playing on the computer helps too. Hope you still get the sleep you need to keep sleep deprivation at bay. Sue.

Ruth, living with someone with dementia is so different from what you and the girls have been used to. I am lucky I have picked up so much from the "classes" I go to at a dementia support group. They teach us how to live with the ups and downs of a dementia sufferers cycles and mood swings. It is up to us "mentally normal" folk to adjust. They can't. For while a couple of years ago our son was in denial about his father's condition and wanted me to get him medications, counselling etc to help him "get better". But each brain cell lost can never be replaced and the condition is ongoing and retarding. It is so sad but we have to live with it, minute by minute, day by day. It just takes so much of my energy sometimes to do so. I think you need to take the motto: "making the most of what you have". Because next month you will be mourning this months losses and so forth into the future. Kids and family members don't understand how much energy is involved in looking after this person we love so much. It is our primary focus and our life's work, and all else seems sometimes to be secondary. Hard for others to understand that. I tell Trev all the time to make allowances, his Dad is doing the best he can with the brain he has. It is not his fault that the fog is getting thicker and he is losing his landmarks. It is such a frustrating disease for the sufferer, the caregiver and all involved in livng with the disease. (((Hugs))) from Sue.

Marie it was lovely to have you at my chat today. I am sorry there was such a fast pace set, that happens sometimes. Maybe you could send a personal message (PM) to someone you have chatted with and ask them to chat at an earlier time to get the feel of it. It is busy at regular evening chat times but the afternoon ones are not as busy so you might try one of those too. I am on at odd times because of our time difference ( I am currently 14 hours ahead of you) but if you see me on do feel free to message me. Sue.