Thursday Afternoon:
I write this while my wife is lying beside me drifting in and out of sleep in the bed she has been occupying in St Vincent Hospital for the past one week. It is 3.45 pm. While my left hand holds on to her hand under the blankets, my right hand writes.
I went home at 1.30pm earlier on just after she finished her lunch, had a chicken sandwich with a glass of Mountain Blast Powerade (hopefully to replenish my energy levels) for my lunch and was back with her at the hospital by 2.30pm.
Since she was admitted to St Vincent I am keenly feeling the loss of her company at home but the thought of what her stay in St Vincent is doing to her well being makes it bearable.
In the one week that she has been here, one thing is clear. The concern of the staff at St Vincent is not only for the health of my wife but also for how my son and me are coping with her dementia. Specialists and the doctor have been talking with us on just about everything : from whether we have suitable furniture in the house to ensure my wife's posture and comfort are managed adequately to what changes we can expect in the coming months and years as her dementia relentlessly advanced into her life and ours!
We are told that dementia will increasingly ask more of what my son and me can give of our time and our effort in caring for her as time passes by and despite our protestation that we intend to cope we were made to understand what taking 24/7 care of my wife entails.
One word that kept recurring in their dementia vocabulary was "respite".
respite
[ ˈrɛspʌɪt, -spɪt ]
NOUN
a short period of rest or relief from something difficult or unpleasant:
There must be respite for my son, me and my wife from the 24/7 attention that dementia asks of all of us. Without respite we will not be able to continue to function adequately, what more give our best, in our care of my wife over the long haul that is sure to come! And their job is to assist all of us to make that happen. In this one week in St Vincent I have come across Indians, Filipinos, Sudanese, Africans, Irish and even the odd white Australians who were all working to make my wife better.
One morning I was helping the Filipino Nurse clean and dress my wife on her bed when the nurse stopped what she was doing...looked across to me and said " The other families do not help me". I smiled....for to me this was not helping her...it was a labor of love.
It is now 7.30 am Friday morning.
I wrote the above piece yesterday. Came home after visiting my wife last night and had an early night without dinner and woke up hungry this morning. Just had a Butter Chicken with Basmati Rice for breakfast (heated up a frozen meal!) and will make myself a cup of tea to sit down to some quiet "me" time and think what best to do in the coming days.
First up will be planning for our move to another apartment in the same building - this one with a shower that will make it easier for my wife to use rather than the bath that we now have - that will be in three weeks time...and that apartment will be on the 7th floor facing the "good" side of Fitzroy and the Sun as it rises in the morning.
Next up is getting a hospital bed and a special mattress to manage the bed sores etc -that will set me back by about Aud $2500 - if we get a second hand....I already have friends helping me out with that costs while I put our car for sale to cover that costs. For their assist I am so grateful. I was thinking yesterday that there are times when having money to get the things you need is important especially when you cannot do without it.
I can do with not getting flowers for my wife to make her stay in the hospital more pleasant. I can do with waiting to get a "handicapped" parking space in the hospital for which I do not have to pay for (the other parking costs more than what I would like to pay) - and some days I have to wait up to 45 mins for a space...but I can wait. I can do with having to wait to have my meals at home rather than spend good money on bad food in the Cafe near the hospital.....but the bed and mattress I cannot do without...so for now I will trade the car in for these immediate needs. No worries!
Its almost 8 am now and I have to do some house tidying up - probably take about one or two hours for that...and then it's time to go visit my wife again. So enough for now....
It is now 7.30 am Friday morning.
I wrote the above piece yesterday. Came home after visiting my wife last night and had an early night without dinner and woke up hungry this morning. Just had a Butter Chicken with Basmati Rice for breakfast (heated up a frozen meal!) and will make myself a cup of tea to sit down to some quiet "me" time and think what best to do in the coming days.
First up will be planning for our move to another apartment in the same building - this one with a shower that will make it easier for my wife to use rather than the bath that we now have - that will be in three weeks time...and that apartment will be on the 7th floor facing the "good" side of Fitzroy and the Sun as it rises in the morning.
Next up is getting a hospital bed and a special mattress to manage the bed sores etc -that will set me back by about Aud $2500 - if we get a second hand....I already have friends helping me out with that costs while I put our car for sale to cover that costs. For their assist I am so grateful. I was thinking yesterday that there are times when having money to get the things you need is important especially when you cannot do without it.
I can do with not getting flowers for my wife to make her stay in the hospital more pleasant. I can do with waiting to get a "handicapped" parking space in the hospital for which I do not have to pay for (the other parking costs more than what I would like to pay) - and some days I have to wait up to 45 mins for a space...but I can wait. I can do with having to wait to have my meals at home rather than spend good money on bad food in the Cafe near the hospital.....but the bed and mattress I cannot do without...so for now I will trade the car in for these immediate needs. No worries!
Its almost 8 am now and I have to do some house tidying up - probably take about one or two hours for that...and then it's time to go visit my wife again. So enough for now....
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