swilkinson

Ken, hope you didn't cop rain all the way down the coast as it has been raining here on and off all Saturday. I love the south coast with all its hills and valleys and the sweeping views of the so blue sea. Should be nice this time of the year and not too much traffic. Hope this turned out to be a really good family time for you. Sue.

Anyone who is a Granma will recognise this saying. It is the greeting of a two year old very early in the morning. I have just had four days down with my Sydney family and enjoyed it immensely. You may remember how scared I was the first time I went down there? Now it is soooo easy. Just a bus and two trains and there are two hills to walk up and there I am. It is still a little steep dragging my suitcase on wheels but I can do it. The Sydney family is still adapting to the news that they are going to Cairns. It was what we mostly talked about. They both have one more subject to complete an assignment in and one written exam and then they will have completed a Diploma in Ministry and be ready to go out as Sallies or Salvos as they are called in some countries. The first weekend in December they will be dedicated to a life of service as officers in the Salvation Army and in January off they go. Their first Corps (church) and a large one at that. How do I feel about all this? Just a little anxious. It is a long way away, the kids are small and Naomi in particular will be growing up without our input. But I know that is the case for so many grandparents in our mobility-crazed world. And so it will give me one more thing in common with a good percentage of the human race. And that is probably a good thing. I went this afternoon to see Ray in respite and Mum in her Dementia Lodge. Ray was out to impress me with how well he is coping on his own and had quite a lot to say ( though he did repeat quite a lot of it). He didn't seem to be missing me at all, smiled at the stories I told him about the grandkids and then shooed me out when he thought it was close to tea time (5pm) and he wanted to be there in plenty of time. Well it is just across the corridor but people were already beginning to collect. In those places meals are the natural highlights of the day. He has been on a couple of bus trips with morning tea and enjoyed both of them. He does love to go out in the mornings so it is good he is still able to do so. I went over to the Dementia Lodge and sat with Mum as she had her meal which was fish and chips (fries) and vegetables, she polished off that, a dish of creamed rice and the glass of water for her meds to be taken with. She made some faces that so reminded me of the two year old I had just been visiting that I know that her genes live on in her great grand daughter. I even got some smiles and a couple of giggles, she looked clean and tidy and was wearing one of last years summer dresses so I was happy with her care. I am gong to ring a few girlfriends and see if I can get together with some this week, I have a few friends who are widows or divorced women and don't really want to go out with Ray and me but are quite happy to meet up with just me. And I do have to accept that for some that is just how it is. It is what I did on one of my previous three day breaks and I enjoyed it so it is an experience worth repeating. But I am also going to start sorting the house out too. It does need a spring clean and I know that once I sort the jumble out I will feel it is easier to maintain. As I left the Sydney family this morning my son-in-law told me how much they had enjoyed having me stay and how he thought I looked much more relaxed after the time off. He is right, I do feel much more relaxed too. As long as nothing comes along to spoil that feeling I will feel like a two year old before you know it. ...bounce...hello...

Oooooh! Phyllis now all of us who have posted, blogged or commented on blogs are looking at our replies and thinking:"Is it ME??" Seriously it does depend on your background what it is okay to say so sometimes we get it wrong. And I can sometimes post on subjects that others might find insensitive or boorish and sometimes something someone else writes makes me feel squeamish or uncomfortable. Bless us all for our differences but our common link of stroke survivor/caregiver. Hugs to you from Sue. :friends:

I have been up since 6am, that would have been 5am yesterday. I got up early because I was afraid if I stayed in bed I would go back to sleep. Church time was changed too, back half an hour to 9am as there was a farewell for a retired minister who has been helping out, mainly with elder care, visiting nursing homes and retirement villages of which we have several in our parish. I know he will be missed as all ministers bring a different flavour to the service. Ray and I stayed on to the lunch, which was separated from morning tea by an hour of chatting, a lovely chance to catch up with people we have not been able to say much more to than good morning. Those who have read a lot of my blogs know how much angst I went through prior to the closing of our old church and yes, as predicted I am starting to feel more at home at the present one. Like stroke recovery it doesn't come all at once, you have to recognise what you have lost and work on improving the situation and then move on. I think I am getting towards the moving on point now as I felt for the first time when we went in to lunch:"I must talk to "X" and "Y", rather than looking around to see if anyone was coming over to talk to me. I am not saying I feel at home there yet, just that it no longer seems a strange place. I also told a few people Ray was going in to respite to give me a break. Some people did look at me strangely after all Ray is a pleasant younger looking invalid with a cheerful manner and "how much trouble can it be to look after him?" Those who live with someone with multiple disabilities and some dementia can answer that I know. But without a break the stress levels would build up even higher and the resentment close to the surface at times might just cause an emotional earthquake that would take a toll on our relationship I would regret later. Let's say an ounce of prevention is worth a pound of cure. On Friday I paid for Ray's respite and also went for Mum's annual assessment interview. She doesn't have to attend it now as I am both her power of attorney and official next of kin. My sister and I are co-heirs but my sister has visited the Dementia Lodge once since my Mum has been there. And that was because I insisted so she wouldn't later suggest she should have been some place else. One of the things discussed was her falls and they said that I needed to sign a Risk Management Consent form if I wished her to stay at her present level of care. So I did. I know this is to save them making the decision but I want her to enjoy the benefits of being there in what are now very familiar surroundings for as long as she is aware of where she is. I know the shift to the other side of the road to the nursing home will come eventually but for up till Christmas at least would like her to stay where she is. After all she is on minimum medication and while requiring a high level of supervision does not need a high level of care. With my daughter and her family also packing up now to make the move to Queensland, my daughter-in-law anticipating her return to work at the end of February and the move for Ray to go into respite for the first time it seems as if much more than the times are changing now. BTW by the time you all put your clocks forward I will be 16 hours ahead of the time in New York.

CongratulationS! :happydance: :happydance: :happydance: :happydance: :happydance: :happydance: You Rock Doc. It's hard enough without the stroke to achieve what you have. And the striving you have done has been an inspiration. Keep on going, you can never get too much education. Well Done. :cheer: :cheer: :cheer: From Sue. :friends:

Denny, you get well now, there is no-one like you for cappucinos, they may be virtual but they are certainly not virtuous, some of those flavours are wicked! Your Friday night parties are legendary! You are a chat host par excellence! Seriously mate, Ray and I will be thinking of you as you go through this surgery, recovery and the track back to health. Sue. :friends:

Annie, this is a lovely blog. Every now and again it is good to get out and do just what every other woman you age is doing, hitting the shops, grabbing a coffee with girlfriends, even taking in a movie. I feel as if Ray got old before his time and now I am too. Must make an effort to do at least some of the things we had planned to do in our retirement years! We had a BBQ, just Trev, Ray and I for lunch today, sat outside under our new patio roofing, just relaxed. It was great. Why don't we do these things more often? Sue.

I just love to fly ( as a passenger) and now Ray can't I just listen to other peoples travel tales and hope one day it will be me! I love your tales of far off places, it is such a chore having to stay four days in some exotic spot. Poor you. But as Bonnie says beware of the earthquakes. Sue. :big_grin:

Had another version of the paper wars today when I had to go to Mum's Dementia lodge to fill in more forms, this time at a conference with staff that acts as an annual review of her status. It really hurts to have her current state pointed out from a nursing perspective. I signed a "Risk Management Consent" form about her falls. I guess that takes the pressure off them. I want her in that section for as long as possible as they are so good to her there and the nursing home is not nearly as modern a facility. If she can stay on her feet she can stay there. It is so sad as I know this is probably the last one I will do. I've also filled in a heap of paperwork for Ray in the last few days, some for the doctor, some for the respite care and some for the insurance company. I feel like his secretary at the moment. And it seems as if all of them in some way state: " we will give care but not take responsibility". So wherever your survivor goes he is still in most ways the caregivers responsibility. Sue. :blush:

I remember Ray picking up a cup for the first time too, instead of a tumbler with a drinking straw in it like an "old person". It is so good when life starts to "normalise" and you get that hope back in your heart. Get Mike all the help you can, it sounds like he is really ready to do as much as he is able now. The therapists will rest him if he needs that. And imagine a tick list here: Mike can do this, this, this and this. I can just see the big smiles on both of you as he does better and better. :cheer: :cheer: :cheer: Sue.

I have just found a new reason to vent. Ray is in his 65th year, that is he will turn 65 in September 2007. So I am starting on all those preparatory steps towards him turning from a disability pensioner to an old aged pensioner. This is a mine field as if I don't claim all he is entitled to we may have an impoverished old age. We took out all our insurances etc was when we had our first house, a young family and looked at insurance as funding our old age and providing for all those things we would need including a change of housing from family home to retirement home. We planned trips - those nebulous dream holidays we all conjured up as the culmination of our working life and maybe giving our kids some money as a present for help them through middle age as we had once thought our parents might do for us. Well none of that happened. Instead Ray had strokes and we retired in 1999. None the less we still have to go through the retirement process. We face difficulties our financial planning did not account for. The pensionable age for women rose from 60 to 64/5 so we had planned that I would be a pensioner in June 2007, Ray in September 2007. That is not going to happen either. But already I am getting all the paperwork as our little amounts of insurance/super etc start to mature. And all told it is not going to buy us a hatful of donuts. I wondered why I suddenly have become shaky and unsure of life and I think it is the sudden realisation that another dream has been shattered. That from the moment Ray had the strokes and we both had to retire, life as we knew it changed not only then but all our future changed too. So now we are still feeling the tremors from that earthquake. And facing an old age that has changed dramatically is a challenge still with us. I know we are luckier than some of our contemporaries who opted to take the money and run, they have no extras at 65 but ours are not the benefit we planned either. I think this is another form of denial I have been guilty of, that we will achieve in retirement all we had planned. Oh no we won't. It is no good pretending that everything will come out right in the end, that we will all live happily ever after, that the dreams we once had are still a possibility. (For those of you that have it so much harder I apologise in advance as you murmur :"she should be in MY shoes"). It is hard to face this new set of facts that $1000 here and there is not a nest egg, it is a drop in the ocean in the face of spiralling inflation. But we have our home, our family, our time together and I am grateful for that. BTW the insurance agent that made an appointment to see us and straighten some of this out for us did not appear at 4pm. Anyone surprised? Instead I received a phone call from an assessor in their Sydney offices promising to send me a sheaf of forms to fill in my "claim". The paper wars continue.

Thanks Mel. I think this has come at an opportune time for me as I know I am grieving for Ray again as his lost mental sharpness is the cause of much stress in our lives right now. With grieving Ray's five strokes and other life events for him as well as what has happened to my Mum in her dementia I am feeling as if I am on the edge of dark chasm and that any minute we will all topple over into it. I know most of what is happening to us is minor in the eyes of those around us and they wonder why we are so pre-occupied as survivors and as caregivers with what is really such a transient part of life. Hugs, Sue.

Still haven't got to see anyone yet. That is probably because they said it was urgent! I did have a call from the people who l used to have financial planning with offering to come out and look over the situation for me. The partner we use to deal with died some two or three years ago, they moved offices and I think lost their contact list as we hadn't heard from them for a while. I wonder how much their visit/advice will cost! And if it will be in my lifetime? Sue.

Fred, you can't be too careful. Sue.

I just saw your photos in the gallery of you and your mom and kids, what nice photos. It is great to have a fun day out. Good for you too. Sue.

Robyn, forgiveness is a process too. It comes from changes within yourself, a slight change of attitude, a slight lightening of your mood until one day you are ready to forgive and move on. We used to say in Lifeline: "You have to be whole before you can become a part of someone else." You can't rush these things, you have to slowly withdraw from your old relationship before you can form a strong bond with anyone else. This applies to broken relationships as much as it does to restoring your life after the death of a partner. You and I have already met a lot of folk who can't have a good relationship because they have a suitcase full of the bones of old relationships they still carry with them. Take it easy, enjoy your kids, try some light-hearted friendships before you try to find that one friendship that will develop into something more. There are a lot of nice warm people out there who will enjoy being friends with you and expect no more from you than you are able to give. Sue.

In Oz we call a guy who keeps saying he will do something and doesn't "Gunna" as a nickname. A friend passed me a joke recently: "There once were two brothers. The father called them together and asked what plans they had for the future. The older son was quiet for the moment. The younger son said: "Gunna plant wheat in that top paddock Pa." the older brother said: "Dunnit." The younger brother said: "Gunna put an order in for the new tractor Pa." the older brother said:"Dunnit." The younger brother said: "Gunna start a family. The wife and I talked about it last night." The older brother just smiled and smiled." Today we had a new lawn mowing man come. Our old one had done our lawn for seven years and had to cut back on his business due to family problems. It seems his son-in-law had a gambling addiction and now they are trying to re-mortgage their daughter's home and look after her children for her as she has to work to keep the home. Life is tough sometimes and it has unexpected twists and turns that you never saw coming. Stroke is not the only life changing experience. We have had another pretty good week. There were some days when Ray seemed slower. I am a bit worried about the dementia as the tablet he has been on may have the same problem as others and only work to its optimum for six months and it is coming up to that time now. I noticed he wanders out to the verandah as soon as he has had breakfast, doesn't go out to the kitchen and do the washing up unless I remind him. He also seem to stare into space more. We don't see the neuro again until December so I might mention it to our local doctor as we have to see him sometime this week. We had a good weekend. On Saturday night we went to a birthday party. My sister has 19 in her family now counting herself and husband, four children, their spouses and grandchildren. They have a "birthdays of the month" party and the family with three out of the four birthdays, her second son's family hosted this month's party so we were invited too. Trev, our younger son drove us up there, the other son Steve, wife Pamela and two children joined us so there were a heap of cousins and second cousins all enjoying each others' company. Ray and I enjoyed it too. We provided some of the food and four token birthday presents and had a lovely evening. Then on Sunday we had an old friend come for lunch and go home at 8pm after stopping on for dinner. It is rare that happens but it was good. I met some friends for coffee today while Ray was at Daycare and they spent all the time talking about funerals - aaarrggh! that was the last topic of conversation I would have chosen but then we are all at that age where we are not only burying uncles, aunts, parents and their contemporaries but also the first from our age group as well. The husband of an acquaintance dropped dead outside the Kremlin whilst they were on holidays! Imagine the red tape involved in bringing that body home to be buried. Made an interesting story anyway and one people will remember for a long time. Mum used to say: "Creaking doors get the most attention" I wonder if our dear ones who we look after get too much attention sometimes. A couple of my friends have recently been away on holidays overseas without their spouses and yet I am getting anxious because I am putting Ray into respite for a couple of weeks so I can straighten out a few problems and get some much needed time off. I think if he was well I would think it quite normal to take time off myself but since he has been ill I have never felt right about doing things on my own. I need to have a look at that attitude and see if I can work out why I feel like that. It isn't the way my friends see it. They think I should take time out for myself, don't see that as selfish or neglective, just normal for this time of our lives. I will have two weeks off starting on Monday 30th. The first week I will spend with my Sydney family. Then I will come home for a weekend, have a few days of house/spring cleaning and look at some of the things that need doing and hopefully get some quotes. There is painting the end of the house where the paint is cracking, replacing the wardrobes in the bedroom with something more suited to our present needs, maybe even going into the twin beds I have been talking about for so long. Without Ray home I can jump in and out of the car and race around getting this done in half the time. Why do I feel so guilty about it? Hopefully there will be some changes for the better in our domestic arrangements. Wish me well and if you don't see me online for a while it just means I am busy sorting life out. Soon I may turn some of the items on my "gunna" list into "dunnit".

We have a lovely orchid show here on the Central Coast. I didn't get to go this year as it was washed out, that was in early September, the last time we had any decent rain. Along with the Flora Festival (which I also missed out on) it is usually one of the hghlights of my Spring. I think it is wonderful to even get one orchid a year, some collections are small but have really special meaning for the collector. Viva les aficianados! Sue.

Deenie, nice to see your sense of humour coming through here. You could have kept that bird's nest and made soup out of it. Thanks for the chat, I really enjoyed it. Hang in there, the reward of being in a room that you have renovated yourself will be worth it. Sue.

I third that, I am just off the bedroom here so if Ray takes a nap and when he goes to bed I am within call and can see and hear him from here. Luckily he has never wanted me right by his side and IS happy reading on our verandah so is no a problem that way. Glad to have you back Ann, do keep coming here and if you could occassionally chat that would be great too as I am missing my midnight chats at the moment. From 29th we will be 16 hours apart time wise and that changes things too. Hang in there girlfriend, sometimes life gives us a breathing space and life actually does get better. Sue.

I think :cheer: :cheer: :cheer: and :You-Rock: :thumbs up: :congrats: :You-Rock: :toothy grin: . Honestly Heather you are doing really well and it is great to know you are getting some confidence back too. Sue :friends:

I did ring and put in a complaint, the person on the phone was somewhat conciliatory. Apparently I have to send a letter saying my Power of Attorney papers are still current (?) and have my husband sign it. That should be interesting. He did speak to the person to give his permission to speak to me. Mind you I am the "owner" of the policy so why I had to do this is beyond me. :Tantrum: I have been crying in the garden this afternoon. I was digging up broadleaf weed and other rubbish in the lawn. That was one of Ray's Spring jobs, our lawn was always neat and tidy and our edging neat and well maintained and when I looked around it is all just so in need of someone else working on it beside me. And the drought is showing now with some of the tender plants that bloom in December drying off already so by Christmas only the leggy geraniums will be blooming. :thankyou: It is all too much some days. I am looking for some positive changes in my life, I want something good to happen. Anyone out there with a magic wand? :cheer: Sue. :Angel: or :death:

Thanks for this post Mel. It certainly brings home for me how hard it is to get the bad guys to trial. I guess you have to be there to get the full force of what your brother is saying. All we can do is pray for them all I guess. Sue.

I had two phone calls tonight. To each of the callers I made the statement :"Ray has had five strokes so he needs me to answer for him." In the first instance I got a very terse reply and the caller hung up. As this one was from our life insurance company and was supposed to give me a run-down on options for the cashing in of one of Ray's policies she is going to have me complain to her supervisor tomorrow. I am sick of explaining that Ray had had five strokes so therefore he can't - understand long sentences, speak on the phone like he used to, consider complicated options, write them a letter giving me permission to talk on his behalf, think fast enough to answer their stupid questions. I want to yell down the phone line: "WHO ARE YOU? ARE YOU STUPID OR SOMETHING? WHAT DON'T YOU UNDERSTAND ABOUT WHAT I AM TELLING YOU?" The second phone call was from one of those "Free Holiday in our Timeshare Units" people. For $109 you got the right to spend five nights in their accommodation but only one night per unit etc. I tried explaining to the lady that our needs were specific as Ray can't walk far, needs a special shower, cannot eat restaurant food, etc. I don't know why I tried to explain when it would have been easier to simply hang up. Both these episodes left me shaken. Maybe the effort of keeping life in focus is proving too much again. It sometimes seems so hard to just have to do the simple everyday transactions that keep life going. I wish I was a business woman and had that kind of brain, so I could make complicated financial decisions and come out with the best possible solution, but I can't. And ironically the nice man who used to be our financial advisor and set me up with Ray's annuity etc died earlier this year of a heart attack in his early fifties. Too bad, loss of another good man. I wonder why I feel so really helpless in the face of so many financial decisions? I am possibly feeling anxious at the moment as the time to put Ray into respite is approaching and I have no real plans as to what I am going to do with the time. I would like to visit my daughter, have a mini break somewhere nice and then spend a few days tidying up the house. I would also like to sleep for a fortnight in a nice room by the side of the ocean on a tropical island in a hugely expensive burro. I think that is what one of those thatched huts are called that you see in places where Madonna or Tom Cruise once used to holiday with their family/significant other. If it is good enough for them, it is good enough for me. So tomorrow morning I will ring the insurance company, ask to speak to a supervisor, complain about *D* the girl who rang me tonight and ask her is it possible to talk this over with someone face to face, and no, I am not going to pay a large fee to talk it over with a financial advisor, thank you very much. Wish me luck.

Deenie you are climbing mountains getting your health back after a dose of the flu. That takes an effort, with all you have to do besides supervising this building project. Hope you get the heat fixed before the really cold weather hits and there is some pleasure to be had out of all this effort. Sue.