Chapter 380 - A Chore
Writing this blog has become a chore; I scribble very little daily happenings in a notebook, thus I have to think too much to write anything meaningful in this blog, yet I must simply to record possible important events along the way. Meanwhile, I am feeling the strain more than ever, I need to sleep in one morning or two rather than experience the pressure of being showered and dressed, her clothes gathered for the day, before Wild Dog's care lady arrives to shower and dress her. A few days ago one of them arrived early, forcing me to slip into a dressing gown, still dripping wet from my shower. Tempting to remain dressed that way all day. Evenings are now the worst part of the day. I try to begin preparing a meal around 5PM. Ready a new Apomine syringe and pump by 7PM, help her change into clean incontinence pants and pad then fit the new syringe by 8PM by which time I am stuffed, soon into bed, sometimes read or watch an occasional TV programme, remaining half awake until 10PM to ensure she takes her meds at that time. During each day I am frequently needed to help her on and off the loo; which means transfers onto the wheelchair then onto the toilet, then off again. Sounds simple, doesn't it? Except that most often she needs lifting when she is unable to stand and requires our fireman's pole and wall rails to stand at the loo while I pull her pants down, as well as pull them up again. Well actually she needs help to transfer from the wheel chair onto the loo, then assistance to stand again while her pants are lowered; then in reverse she may need to re-sit on the loo several times because sometimes she is unable to stand long enough for me to raise both inner and outer garments in one furious tugging motion. Some nights her incontinence pants leak requiring at least the lower sheet, her slippery satin turning sheet and the water proof kylie sheet to be stripped for the wash. Two nights ago, on her own about 4AM, she stripped her bed without waking me. I only remembered this morning to turn on the washing machine prior to another emergency.
I am becoming irritable, short tempered. This morning, just before the daily care arrived, I stood in the bedroom listening to "Ockham's Razor" on RN; she picked up on a comment made, insisted on talking about it so I told her to "Shut up!" and stomped out of the room, thus missing the rest of the programme. I am also slamming doors which seems to give me some satisfaction.
The rash and itchiness have faded from her legs and back, although for a few days spots appeared on her lower legs. She continues to take Claratyne, now well into the second bottle. When she saw GP Dr I. last Monday (more later) he said her Serum IgE was 252 kU/L rather than a maximum level of less than 100, so he sent her for an allergy test which turned out to be another blood test, not the skin scratching type as expected. No results about that yet.
Anyway, the reason for seeing Dr I.; sometime after 9AM Saturday March 7th she entered the TV room from her sewing room pushing her trolley, saying something like "My leg's going" and before I could reach her (a small table was between us) she crumpled to the floor, falling neither forwards or backwards, no to the side, simply into a heap. I helped her up using a pillow for her to kneel upon then with some difficulty placed her on the recliner. She said she had no pain, although she did rub her left foot. By 0940 just before leaving for Wild Dog respite she asked me to wrap her left lower leg in bandage. She called me about 3PM to collect her. On the following day, Sunday, her left ankle was flushed and small red spots appeared and there was bruising at the base of the toes. On Monday her left ankle and foot were noticeably warm to the touch but by the time she saw Dr I. late Monday, inflammation and spots had disappeared. He examined her foot, finding nothing to be concerned about other than keeping it bandaged. Now a week later signs of bruising persist. Of note is that on the Saturday morning she fell, her 2AM and 6AM were missed due to sleep and the latter was not taken until 0740.
Way back on Thursday 5th March Wild Dog drove us up to West Beer for an appointment with neurologist Dr F. As we are beginning to expect, he was running late again, there were four patients before us, so I left her and our driver downstairs in the coffee shop while I completed some paper work, we had some lunch then waited for at least 45 minutes in his waiting room. We find him quite good at explaining matters but has negligible time for questions. We arrived back home at 1800, having left about 1000; a long day for a brief 15 minute consultation.
Her care package has been providing us with transport for her appointments. I sent an email asking for transport to her upcoming appointments at West Beer and Hot Air City hospitals. A resulting phone call from Wild Dog advised that the budget was unable to cover further transport. I slept badly pondering whether the daily care will be cut as well. I rang next morning to be told the daily care was covered; and was asked "Have you tried anyone else to fund travel for appointments?". I hadn't; a government body for carer's (with which I am registered and will refer to as CACT) was suggested and then the helpful Wild Dog person offered to ring CACT on my behalf. A little later another call told me everything was arranged, CACT will cover the costs and Wild Dog will continue to provide the transport. A good business arrangement for all concerned. Up till then, I believed CACT only provided funding for respite for me and such would not cover transport for both of us to her appointments. Perhaps a claim could have been made when she entered the Wild Dog establishment for respite a short time ago.
Some phone calls during the week gave tentative dates for further visits to West Beer, firstly for her to be assessed for a PEG/J tube insertion by the Gastroenterology Clinic on 24th March and the actual insertion on 29th April but preceded by a nasal tube test and calibration of Duodopa from 21st April (so she will be in hospital at least between 21-29 April plus a few days). She remains somewhat fearful of the procedure (I don't blame her) but I am hopeful of much improved mobility for her as a result.
Should her mobility not improve, then we will need a lifting device for her and perhaps even help in the evenings to ready her for bed. I had no idea that providing care for a mobility challenged person was so debilitating, so stressful, so draining. I look at the carers visiting each morning, wondering how they cope; but of course, no matter how many persons they help during each day, their work day only lasts for so long.
I am becoming irritable, short tempered. This morning, just before the daily care arrived, I stood in the bedroom listening to "Ockham's Razor" on RN; she picked up on a comment made, insisted on talking about it so I told her to "Shut up!" and stomped out of the room, thus missing the rest of the programme. I am also slamming doors which seems to give me some satisfaction.
The rash and itchiness have faded from her legs and back, although for a few days spots appeared on her lower legs. She continues to take Claratyne, now well into the second bottle. When she saw GP Dr I. last Monday (more later) he said her Serum IgE was 252 kU/L rather than a maximum level of less than 100, so he sent her for an allergy test which turned out to be another blood test, not the skin scratching type as expected. No results about that yet.
Anyway, the reason for seeing Dr I.; sometime after 9AM Saturday March 7th she entered the TV room from her sewing room pushing her trolley, saying something like "My leg's going" and before I could reach her (a small table was between us) she crumpled to the floor, falling neither forwards or backwards, no to the side, simply into a heap. I helped her up using a pillow for her to kneel upon then with some difficulty placed her on the recliner. She said she had no pain, although she did rub her left foot. By 0940 just before leaving for Wild Dog respite she asked me to wrap her left lower leg in bandage. She called me about 3PM to collect her. On the following day, Sunday, her left ankle was flushed and small red spots appeared and there was bruising at the base of the toes. On Monday her left ankle and foot were noticeably warm to the touch but by the time she saw Dr I. late Monday, inflammation and spots had disappeared. He examined her foot, finding nothing to be concerned about other than keeping it bandaged. Now a week later signs of bruising persist. Of note is that on the Saturday morning she fell, her 2AM and 6AM were missed due to sleep and the latter was not taken until 0740.
Way back on Thursday 5th March Wild Dog drove us up to West Beer for an appointment with neurologist Dr F. As we are beginning to expect, he was running late again, there were four patients before us, so I left her and our driver downstairs in the coffee shop while I completed some paper work, we had some lunch then waited for at least 45 minutes in his waiting room. We find him quite good at explaining matters but has negligible time for questions. We arrived back home at 1800, having left about 1000; a long day for a brief 15 minute consultation.
Her care package has been providing us with transport for her appointments. I sent an email asking for transport to her upcoming appointments at West Beer and Hot Air City hospitals. A resulting phone call from Wild Dog advised that the budget was unable to cover further transport. I slept badly pondering whether the daily care will be cut as well. I rang next morning to be told the daily care was covered; and was asked "Have you tried anyone else to fund travel for appointments?". I hadn't; a government body for carer's (with which I am registered and will refer to as CACT) was suggested and then the helpful Wild Dog person offered to ring CACT on my behalf. A little later another call told me everything was arranged, CACT will cover the costs and Wild Dog will continue to provide the transport. A good business arrangement for all concerned. Up till then, I believed CACT only provided funding for respite for me and such would not cover transport for both of us to her appointments. Perhaps a claim could have been made when she entered the Wild Dog establishment for respite a short time ago.
Some phone calls during the week gave tentative dates for further visits to West Beer, firstly for her to be assessed for a PEG/J tube insertion by the Gastroenterology Clinic on 24th March and the actual insertion on 29th April but preceded by a nasal tube test and calibration of Duodopa from 21st April (so she will be in hospital at least between 21-29 April plus a few days). She remains somewhat fearful of the procedure (I don't blame her) but I am hopeful of much improved mobility for her as a result.
Should her mobility not improve, then we will need a lifting device for her and perhaps even help in the evenings to ready her for bed. I had no idea that providing care for a mobility challenged person was so debilitating, so stressful, so draining. I look at the carers visiting each morning, wondering how they cope; but of course, no matter how many persons they help during each day, their work day only lasts for so long.
posted by Kilpike | 11:22 am
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