swilkinson

Fred, I always marvel that we live in a world with so many contrasts, you are hot, we are cold, you are trying to keep cool, I am trying to keep warm! I try not to watch tv when the news is one track, politics, or weather or whatever. That is when I read and think and contextualise ( sort it all out) and then have nap if there is the occasion for it. You have to plan for it but even the hottest day can be an opportunity for some R & R. Try a kids blow up pool full of cool water to put your feet into and a good spot to sit and watch life go by. Sue.

Ruth, here we have wheelchair taxis. If you plan a few hours out with Dick maybe work out a pick up plan, so the taxi picks you and Dick up at point A, drops you at point B, an hour later picks you up at point B, drops you at point C etc. A friend of ours did this for a couple of years with his wife, once a month, whole day out. It took some budgeting and programming but it worked for him and lifted the guilt of her complaint: "I never get out of here." You could also maybe take someone else with you to help you with the chair. Trev lifts Ray and he lifts the chair, he has a good strong young back. Nice to see you sharing your life with us again. Sue.

Jeannie, clicked on the link but couldn't find the belt you are describing. I got a gait belt, called a johnny belt here, made also of water and flame resistant materials and with a Velcro overlap closure. It has four handles so can be used for two person assist which Ray will be for a while. Glad you found this lady's talk interesting, we can all learn new ways of making caregiving easier. Sue.

I hate going in to the hospital every day. It is easier in the car although there are a lot of road works between here and Gosford. I try to work out when there will be less traffic but sometimes get it wrong…lol. Today Trev took the car to get a new battery and a service before it is re-registered so I went on the bus. Not an ideal day for it as it was cold and windy. Ray has won his battle with the chest infection but still has the cough so the speech therapist is working in that. He is still on level two fluids so off the thickest ones now. The physiotherapists came to walk him today and his walking is terrible, they used a rollator for him to hold onto while they propelled him forward using a gait belt. It was intended to focus him forward but the cornering was so erratic I thought they were going to drop him and another nurse rushed in to help. He did walk as far as the door, maybe 20 steps all up, so that was something. He has slipped into a dependent pattern. One of the aides fed him his lunch by the spoonful until another one came in to tell her he must feed himself with her looking on. They are trying to get him to be aware of his left side again as once more he sees only the right side of his nose. His dangling left arm they are putting down to “locked-in syndrome” saying that the brain is isolating it to protect the damaged area. This means he may lose elbow and wrist movement if he doesn’t use it soon. I find all of this very scary. I had two reports from visitors yesterday, my sister wrote on Facebook that when she visited he was in “good health and good spirits” and my sister-in-law rang to say that when his brother visited last night he was very sick, couldn’t hold his head up, had an episode of incontinence, seemed unable to focus and the b-in-law was in tears on the phone. Maybe it is because he hasn’t seen him for three years he noticed the difference? I asked about the staff about the incontinence and there is going to be some effort made to re-teach him to use the urinal. At the moment he is incontinent in both kinds but they are hoping this will improve. They are saying as we all say here it is “early days” yet. I can see that this stroke has taken a lot from him and don’t know if he has the energy to fight back now. We have done this so often now we are both tired of it. I watched him put through an extended version of the mini mental test. He had no idea where he was, the day, the month and the year. His short term memory is obviously gone and yet he was okay with the maths part of the test, could take 7 from 100, 93 etc backwards about six levels, draw the clock face and remembered a simplified address after a few promptings. It is strange what you lose and what you retain after each stroke. The psychologist thinks he will manage the rehab program as she thinks he has the ability to retrain. I think she is a bit optimistic but if they are willing to fund it I am okay with that. Luckily there is a big push to keep people with dementia in their own homes so I can probably get the help I need. We baby boomers are going to take up too much space in care homes if something isn’t done soon. I will be happy not to put him into care and to bring him back here for his sake but seriously not right now. It is really heart wrenching to go in day after day and see him now, with the new droop to his mouth and his unkempt look as the staff let him sit around all day in a hospital gown (incontinence issues). I wonder what they have done with my husband and why I am visiting this old, old man. There are very few glimpses of the Ray of even a few months ago. When I visit, morning or afternoon, he sits and nods off. He is very sleepy and when awake stares into space most of the time now. With the warmth of the room and the emotional strain of watching his struggles with his lunch, with the test, with walking etc I almost fell asleep myself late this afternoon. Ray seems so unaware of his surroundings. He is not able to name where he is or where he normally lives. If I thought he didn’t think of me much before I am sure of it now. His whole body is on slow down and the mind is switched off to what is happening around him. I hope that will change as time goes by. Sorry for my lack of time and concentration here. When things improve I promise I will be back in mind and spirit again. For now my whole focus is on Ray.

Ruth, Ray's vascular dementia is worsening too and for the last two weeks it has only been "yes" or "no" to maybe every third question. I don't know how the therapists are making out with him as he can't remember that anyone at all has been to see him and will tell me "no" if I ask. I check with staff and he has had the doctor, one of the therapists and two other visitors. I am not feeling at all optimistic about how things are going. We have three children, one away down the south coast will come up in two weeks for a few days, one tells me he is too busy after a visit in which Ray did not speak to him and that leaves Trev and he is job hunting again. I wish we could see a light at this end of this particular tunnel. Sue.

Congratulations You are the best, persevered and passed the test! Good for you Katrina. As you said one by one the objections disappeared but only because you kept on target and never gave up. You are a champion. Sue.

It is good when all of the work you have put in finally starts to show results 2003-May 2005 were our good times, Mum settled in her Dementia Lodge, Ray fully recovered from 2001 stroke and we seemed to do a lot of things we hadn't done in a while. I actually wrecked one wheelchair when I went down a gutter and bent the wheel so badly I couldn't get it fixed! And yes, I have had a lot of people young and old stand and watch me struggle. Hope you find a lot of good things to do this summer - enjoy. Sue.

Julie, you are doing so well. Ray and I did some of the things you are doing 15 months or more out from the 1999 strokes. I remember how nice it was when things seemed to be returning to something like our old normal. I liked that Larry worked out his own way to clap. Ray bangs his right hand flat on the table or the arm of the chair or the program on his lap to make his gesture of appreciation. I love live music and it is a long time since I have been to a live concert. I'll put it on my wishlist for the future. Sue.

Ray is officially out of danger now as his kidney function has improved and his diabetes is almost under control again. He is on the thickest of thickened fluids but he is still coughing so that is a bit of a worry. He doesn’t talk much, an occasional “yes” or “no”, no extended answers. It may just be that he is in a strange place and that is inhibiting him. The room he is in which is a small triangular single room has a nice view out of the window and they sat him near the window for a couple of days and he seemed happier with the passing traffic to watch as he does at home. I have been going in every day, paying for parking and today found out that I could have got a “carer’s permit” that allowed me to park for $1 a day for the time he is there, would have saved me a lot of money. It is a large hospital spread over about six four storey buildings so I am only just finding my way around with confidence. I actually did my chaplaincy training there in 1994 but that was a few redesigns ago. I have been going to stay home for a couple of days and do some re-organizing but can do that when he is moved closer. Once he is in the little geriatric hospital (similar to a SNF) his treatment will stabilize and I will not have to be there to answer questions for the staff. I was hoping to see some of the therapists today but no-one appeared, in fact he did not have any attention at all apart from the general staff. Maybe until he is stable, which he is now, no therapy could take place. The weather has cheered up so it is not as bad traveling in and out to Gosford. There is a lot of roadwork going on between here and there so lots of hold-ups and very slow driving. A trip that used to take 25 minutes now takes 55 minutes. I hate that slow, slower, slowest driving. It seems like such a waste of time. I keep thinking of everything I could have been doing instead of sitting there in traffic, no wonder the younger ones get caught texting, they are trying to fill in their time. Trev and Edie are preplanning their wedding on the new date of 6th August. They will have just a family party afterwards and Ray will be there even if I have to hire a couple of aides to be with him. It is a pity all this had to impact so many other people. Trev is just so afraid Ray will have another stroke. At aged 15 he was with us when Ray had the first one in 1990 so I guess that is one reason he is more affected than the other two. One day life will return back to normal…that new normal that comes after every traumatic event. I can say that here knowing you all, survivors, caregivers and family members, will know what I am talking about. That is why my blog is here rather than Blogspot or some other site because here I am talking directly to people who know what I am talking about and how I feel. I am sorry my attendance at chat etc has been so erratic, it will be for this week and maybe next and then life should slowly normalize again. That is if life goes as planned…hmmm…where have I heard that before?

Leese you are so funny...lol. Thanks for the smile. Sue.

Dean, I am watching Ray rapidly losing certain functions now. He may have had another stroke on 30th May. He certainly does have a fractured head of humerus and has been on a course of antibiotics for the chest infection that have taken away the fever but not the cough. My question is: At this stage should we expect him to do physiotherapy or is the rest worth more than the repetitious exercise or trying to reform old pathways in the case of his legs or to increase the function of his now decreased use of his left arm? I wish I had a road map of some of this expected recovery and a work plan to go with it. Sue.

Shame on a society that does not value it's veterans. If they can't find jobs programs should be put into place to retrain them for jobs that are available. Keep reminding us Fred that we need to value the jobs others do for us in our society. And praying for the whole community is not a bad idea, so we need to pray for the police, firefighters, roadmakers, nurses, whoever does all those jobs that make our society work without us having to do for ourselves. Thanks for the reminder Fred. Sue.

When Ray had another stroke on 30th May it was six years since his 5th stroke. I wonder why they happen when your partner is supposedly on all the right medication, having a balanced diet etc. This one has taken more of his movement away and the use of his left arm is worse, hanging at his side now like a dead limb where before he would hold it up and use his cupped hand to carry things. The stroke resulted in falls and the falls resulted in a broken head of humerus. It made life a lot harder for me. I was lucky to get some extra help from our services provider so at least he got a shower each week day. But as one of my dementia support group says:"If you get an hour's care a day that is 23 hours without care." I really started to agree with that statement! Which is why when he had a fall last Tuesday night and was laying on the floor in pain I called an ambulance and allowed them to take him to the nearer of our two local hospitals. It doesn't seem fair that Ray gets sicker and sicker but that is his story at the moment. Sometimes I get envious of the "success stories" of those who have a stroke, recover and go back to work but that was Ray's story with his first stroke in 1990 aged 48. He had six months off work for rehabilitation etc and then returned to work. The two in 1999 retired us both, me to look after him. Now he has had three more, 2001, 2005, 2011. He is going downhill, the combination of stroke damage and dementia is a hard one to overcome. We do the best we can from day to day. On Tuesday Ray had two falls one in the morning when Trev came over and picked him up, one Tuesday evening when I sent him off to hospital in an ambulance. When the paramedics checked his blood pressure it was over 220, far too high, he was red in the face, feverish, barely conscious. I am sure they thought he was having yet another stroke. When they asked him was he in pain he described pains here and there. He went in and out of sleep (unconsciousness?) as I have seen the 90+ ones do in Mum’s nursing home, it was really scary for me to watch. I knew that I couldn’t cope here with what he was going through and that hospital was the best place for him. I followed the ambulance to the hospital. I had taken him to the doctor that afternoon and at the doctor’s insistence, we went to get his chest xrayed. This had exhausted both of us as Ray was struggling to stand and I had to hold him up for the xrays to be taken. He was hardly able to stand at all and seemed very weak and unfocussed. The radiologist had gone home before we had the xrays done so I still don’t know what the report said as I never picked them up. I knew Ray would not be able to answer questions for the paramedics in Emergency and tell those dealing with his case what they needed to know. I spent until 1.30am in Emergency right by his side by which time they had allocated a bed for him. He has been admitted under a gerontologist. Because of the seriousness of his condition I was asked if I wanted him resuscitated in a crisis. I really didn’t want to make that decision but had to in case he reached crisis point overnight. It was hard for me to say "no" but I have seen too many people lying unresponsive in a bed in a nursing home to want that for Ray. Ray's presenting problems this time were chest infection, low oxygen, and impaired kidney function. I know he is in God's hands and pray that all those other hands he will be touched by do so with care and respect. I thought he would find being in hospital hard but you should see the wondrous smile on his face as those lovely girls and young men come in to minister to him. Ray has always loved nurses and once more they surround him. Yesterday was a crisis control day as they focused on getting him rehydrated and onto antibiotics, looked at all his systems, did bloodwork etc. I was there for six hours or so answering question after question as they try to get a picture of his general health, what he can and cannot do before May 30th, after May 30th. They decided that with the chest infection he would be nil by mouth, that was hard for him but I could see the improvement hour by hour as he got rehydrated. Today I was told all his functions are “below the red line” which I take to mean much improved. He looked better too. I took one of the church ladies with me to visit and another couple came from our WAGS (stroke support) group so he had quite a party. It was good to see him smiling and with normal colour again. Marvelous what a couple of days on the right antibiotics can do. But I guess we are not in the clear yet. He has yet to walk or weight bear at all. The social worker wanted to speak to me. She is the one who may advise me I have to put Ray into a nursing home full time now. I will reiterate that as long as he can mobilize (walk) I will have him back home. If he cannot then of course he will have to go somewhere where there is staff and lifters and all that is needed to mobilize him and get him from place to place. It is blindingly obvious that I cannot do that alone if he can’t walk at all. This house is just not built for that and I am in danger every time I lift him on my own. It is going to be hard for me if I have to make that decision but know it is one made every day by someone who can no longer care for their loved one at home. I am sure my children will help me with it and help me afterwards as I would have to clean the house out to move as I am sure financially that is what I would have to do. Tomorrow is another day and I am sure will have it’s own blessings and sorrows. Think of me as I talk things over with the social worker and try and think logically of what lies ahead. It is hard when you become the one who makes the decisions that affect the life of someone you love so much.

Fred, you are more than welcome here as you know. I am a little slowed down as a commenter on blogs at the moment with Ray in hospital so I may miss an occasional one but I will read them all. Sue.

Ruth, I was told tonight in hospital that they may be able to get Ray to walk again but if not would I please start looking at nursing homes? Ray has had another recent stroke and is in hospital tonight with a chest infection and impaired kidney function. Not good. I too ask you keep up with your blog as some of us are surely facing that decision ourselves and need to know how to fight to see our loved one gets the best on offer. Sue.

As always you made me think, in this case about how I see happiness. Thank you for this thoughtful blog. Sue.

Mike you are not alone here, from time to time I have had a few male caregivers in chat but unlike the girls who seem to make it their Tuesday night place to be the guys only stay a while and then do...whatever... to get support. I'm thinking they come on with a problem, we help them solve it, they go again. Women chat...that is what we do...so we have girls nights, Facebook friends, old school friends, even former sister-in-laws we ring and chat to. We don't need to have our problems solved we work things out in a different way. We chat, listen, absorb, try out that solution, move on to the next, or that is the way I do it anyway. Then I sit back and wait for the next person to bring in a problem and we all work on that one. I belong to groups that involve male caregivers, particularly my dementia support group. We have about 30/70 men to women. Women look after their parents, spouse, children, in-laws. friends, neighbours and anyone else that seems to come along and need care while men mainly look after parents and partners as you do.With women we are drawing on a larger proportion of the demographic and as I said above they are actively looking for someone to chat with. Maybe that is one of the differences between men and women. One thing our dementia support mentor does is tell people not to stop coming when their care recipient dies. He calls those who have finished caring for someone "graduates" so if they want to they keep on coming. So a man walks into our group and sees other men there, men looking after a young onset partner, looking after Mum or Dad, looking after a brother-in-law in one case. If they are not there he sees a couple of older guys who have lost their partners but still come to the group. So a man walks in and sees other men and doesn't have to sit with womenfolk all around but next to another guy. For this reason I asked John (john88) to stay on my chat when his wife died so a man coming into my Tuesday chat would see another guy there. He now has remarried so is there less frequently. I am hoping someone will choose to stay on and help me by being the "male chaperone" if you like, a male voice, a male perspective, a male opinion. And ultimately when someone like you comes in that wants a male perspective, there is one already there. Sue.

Wow, lots of insights there. I could have told you some of them, not because I have them myself but because as an observer of Ray I can say: "he has lost this, he can no longer do that". And as he has had five strokes I guess I should have documented each one as I now cannot remember when he lost a particular talent or movement, I only know what he cannot do now. Oriana, I am sure your book will be a hot item, you write so well and as it is autobiographical people will believe it because you have experienced it. Bravo!!! Sue.

I was half way through chat and had a visitor come so I excused myself and left Hostsarah in charge…good for you Sarah! My visitor was an old friend who desperately wanted to help me out during this current crisis so she had made us a casserole (beef stew) and a fruit loaf to cut if visitors drop in over the long weekend. It is such an old-fashioned thing to do that it reminded me of my Mum’s generation who arrived at births, deaths and sudden illnesses armed with a casserole and a beef tea and a bevy of home made remedies. As they left the house they carted off the smaller children and the laundry and anything else they could carry. It was the way a community reacted to a crisis, feed and nourish those going through it and restore life’s balance again. When did we stop being a community and start being people who lived in houses, flats and apartments and never bothered to get to know their neighbours? When did the underlying neighborliness that people felt as responsible citizens break down into food stamps and welfare and a feeling of hopelessness and helplessness? Shouldn’t our communities rally round someone who needs help? When did that stop? I was taught by my mother to look out for the neighbours, those little old widows that lived alone needed fresh fruit and vegetables from our garden, a hand cleaning their windows, someone to pick up their parcels from the post office. They needed an afghan rug for their knees, some warm woolen socks, a man to mow, or clip the hedge or fix a leaky tap. They needed community support. It might take a village to raise a child; it also takes the same village to look after the old. Ray isn’t old and helpless but he does need a lot of help. Mainly I do this all by myself with a little help from Trevor and the community services people when I hit a crisis like now. We live in a society where people pay taxes and then when they need help they get it in the form of homecare, so our shower nurses and respite people are paid for out of government coffers with a small co-pay from the care recipient. So I just need to qualify for the help I need. This is done by assessment but anyone coming now can see I need help as Ray’s mobility is severely compromised. I am hoping that will improve and then I will let the extra help go and go back to my former package. Maintaining people like Ray in their own home rather than a nursing home is cost-effective. I am here all the hours the carers aren’t, so if I get a carer for an hour there are 23 hours when I look after him by myself. It is not hard when you break it down. It is mealtimes, tv time, exercise time, nap time etc. The shower is once a day and the rest of the time I care for him alone. I was laughing with our male careworker this morning. He asked me how I coped. I said that I can do a lot of things he can’t do. “Like what?” he asked. I told him that when I get Ray up off the toilet I say: “Hug your wife tight.” So he puts his arm around my neck and by feel I pull up his underwear and his trousers. Then he takes his arm away and I make sure he has his stick and help him walk forward. I said: “If you did that you would probably be up on charges.” And he laughed. Getting the care I need is proving harder than we thought as I need two workers for the shower time as Ray is temporarily two person assist. This means two people are here for the first half an hour then one goes off to another client and one stays here. I am not sure how long this is going to be for but I guess someone will judge when he is walking okay and balancing alone and then we will go back to one person again. All this would have been avoided if Ray had been hospitalized when he had the fall. Then the services would have been funded as “aftercare” with a lot more people involved and I would not have had to do all the organizing. There is a kind of irony about all of this. The squeaky wheel gets the most oil so because I am fairly self-sufficient we are not seen as people in a crisis so I don’t get the help I need. And because I don’t get the help I need I am more likely to break down and have to put Ray into care (SNF) which in the long run is less cost-effective. Make you wonder if there is any thought that a little help now will save a lot of money in the future? And so back to the story of my visitor: she discussed the issues with her doctor son this morning expressing that she wanted to help more. He said: “You are too old to help Mum”. Which of course is not true. A casserole is a great help. Tonight I can do some other job instead of cooking an evening meal. My friend Gwen has taken that load off my shoulders by providing us with dinner. God bless her and all those like her. So I am hoping hat the weakness Ray is experiencing is a side effect of the small stroke on the 30th May and not something else. I am hoping if I keep getting him up by myself that it will retrain his brain and he will once again get up by himself. If the weakness is either the stroke or from the shock of the falls then it should gradually disappear. If none of this happens I am going to have to look at the future and work out if I can cope for the next while and if not what I will need to put into place to do so. I have managed to look after Ray for over twelve years, a few more will be possible if I can get some help. There is no real reason that he cannot remain in the house he built and sit on the verandah for many sunny days yet. As long as I stay strong and organize things so I don’t break down or burn out.

Hey Mike, we have replaced smarts with experience here and you are more experienced than some caregiving for two/three people as you do. Thanks for bringing this topic up in your blog, I think if people read it they will know that men, as problem solvers, providers and the mainstay of the family financially in some cases often haven't been taught to be emotional as women have. That then carries over into areas of their lives (like the bedroom) where they would like to show emotion but maybe find it difficult, particularly as that is also a role change from provider and caregiver to lover. That is a leap that both sexes often can't make. Not a male opinion, just a female with her 2 cents. Sue.

Lynn, happy anniversary. Commiserations about the tooth thought - $1000 - wow! What couldn't we buy as a present for that kind of money? New stereo, new summer wardrobe, a weekend away...hmmmm. Hope you come home from the dentist with some change and some peace of mind. Sue.

Asha, after a traumatic happening I take a while to find the positives in life, I can't just jump from the mud to the stars. But you as always are the guru and yes, we can still find much happiness in life whatever our circumstances. Sue.

MaryJO, we have a small lot and I get a lawn mowing man in, three weekly in summer (wet weather) every four weeks in winter (cold weather, no frost or snow). The winter mowing is to keep weeds from taking over the lawn. I am glad Dan is progressing but wonder if home will be a possibility in the future. I am facing in the other direction, wondering how long being home will be possible for Ray. With another possible stroke on 30th May Ray has again changed a lot and my thoughts are that we will cope with this one after a few adjustments provided I can stay strong. Girlie things like haircuts, massages etc are currently in a holding pattern...lol. Sue.

Fred, we are always looking for heroes in the wrong places. We choose military commanders, movie stars, sporting personalities, we have forgotten to look at our own parents and our own neighbours for our every day work-a-day heroes. We don't need people we have to look up to or see from afar, we need people we can live with and work alongside. Here too heroes have clay feet, we do too. Maybe what we really need is to be humble again and see that all human beings are flawed but can ascend that and become people who are community minded, God fearing good guys anyway! Good men like you Fred. Sue.