A Carers transition from employment to a benefit: Part I

Giving up my job was the right thing to do and I enjoy being free to concentrate on Mother's needs. She could die any time. I want her to feel safe and secure during this helpless vulnerable time for her. Time with her present that is so precious with not knowing when it will be over. Collapses with times she looks dead have given a glimpse of what the end could be like; sudden, always unexpected and the "shes gone" thoughts, only to see her take another breath and I breath a sigh of relief as she eventually wakes and smiles sweetly. Mother always smiles when we are around. She loves company.

It has been an anxious time during the transition of using up my annual leave and waiting, wondering if my budget will cope with the "Carer's Benefit". I'm thankful for living in New Zealand, where everyone is treated as equal, entitled to health care from birth. We all pay for it with our taxes, of course, and never know when, or what life circumstances come our way that will cause one of us to require the support of "social security", "welfare" or "Government funded assistance" as it can be called. Careful budgeting is required of course, as only enough funding is allowed for basic needs (i.e. food & shelter), with strict criteria involved through the application process, including means testing, Dr's letters, pay slips from work and info from banks and tax dept. etc. etc. I'm so glad I don't have any vices like smoking or drinking that would waste money, as then there would not be enough for food! 

When I first applied, I was turned down due to earning too much (that was because I had been working!) and had holiday pay owing. I thought that giving all the information during the application, all would have been taken into account, to allow for a seamless transition, once my annual leave ran out. But no, I had to wait another four weeks to reapply, with the same information, before being approved. I can't see the departmental efficiency in repeating all the paper work, but mustn't complain as this time I was approved as qualifying for the Carer support benefit. It is amazing the relief I felt, as I was determined to look after Mother and every little bit of support eased the burden to some degree.

It is interesting how life pans out. Soon after I had ceased work, my glasses broke. It was one of those things that I had put off with busyness, being over due for my eye check-ups and new prescription glasses. The part that broke was what held them on (being transition lenses and frame-less), were not cheap.  Breaking forced me to face the neglected eye needs issue. I thought I could stretch my budget to take that in my stride, still having holiday pay coming in. It was time I got new frames, as I couldn't easily see my frame-less glasses when off, and was always wasting time looking for them. It was time I settled for frames, I resolved.

The next thing that happened was my thermostatically controlled gas fire (I have in the lounge) decided to stop working. Right when we are in the middle of winter and having a cold southerly front blowing in on us. Because New Zealand is sub-tropical, our homes aren't double glazed and insulated like in colder climates.   The fire had just been serviced a month and a half previously! So I had to get the service agent back. I thought my gas bill was high and asked him to also check for leaks. I had changed from electrical heating to natural gas to save money after all. The service man was great and showed me as he did the measurements. I had a leak 2.5 times the legal amount allowed to leak per minute. That was great news in one respect, as it could explain the higher bills, but in another respect it wasn't so great. The piping under the house was old and the most likely cause of leakage, as all other checks were negative. The gas man spent the next few hours replacing the piping. I'm expecting the service bill to reflect that. 'Cold' to me was an inside temperature of 15 degrees centigrade. I think our Ministry of Health say homes need to be over 18 degrees minimum to be healthy from mold spores etc.

Mother stayed in her room with an electric oil filled radiator heater on to keep her warm a cozy 23 degrees centigrade, while the gas got sorted. She feels the cold, and the house was really cold (for NZ) while the gas was turned off. Mother kept occupied between watching TV and watching out the window as the workmen went back and forwards sorting out the gas piping. As she settled to bed that night, Mother happily said it was an interesting day "with all the goings on". 

There is a weeks stand-down between my last (holiday) pay and the Carer's benefit starting. I am still am not sure what the final amount will be, as tax will come out first. Once I have a couple of weeks living solely on the benefit, I will update reader's on how manageable it is in reality.

A Working Carer's work-journey end?

Mother collapsed again, this time at home while sitting on her walker. I lifted her onto the floor and rang her emergency alarm. Mother was taken to the hospital ED and investigated. She took 5 hrs in ED to come right enough to return home. The outcome of investigations and discussion including Mother's GP (who knew her well) were to inform Mother and myself that her Aortic Stenosis had got to the point that collapses would become more common and Mother would take longer to recover each time (if she did). She was damaging her heart (like having a heart attack) each time she collapsed. There was no need to return to ED with collapses. Mother's blood tests showed she was otherwise healthy, and was obviously being looked after well. The ED Dr was worried about how much support I had, and said she would refer Mother to the Palliative Care team. 

We left the hospital and went home. I felt stunned. Mother settled into her bed and slept. She continued to sleep most of the time and when awake, was tired and weak, I observed, just like others were after a bad heart attack.  I was in shock and worried about leaving Mother alone when at work. I took an annual leave or two, as we were quiet, but eventually had to work. I got my daughter-in-law to sit with her till my husband arrived home, wondering if Palliative Care support would enable me to continue working. I waited for the assessment.

Mother's Dr came and saw her at home. He immediately listened to her heart, nodded knowingly, confirming the severity of her Aortic Stenosis. He also noted a deterioration in Mother's dementia, which was also associated with damage from lack of brain perfusion from the collapse. He explained gently that the event of sudden death was likely any day up to under two years, sooner rather than later. Safety was a concern and he wisely advised me it was time to stop being a nurse and be a daughter. I immediately said I was prepared to stop work to be there for Mother, knowing that was why I took on her care.

I saw my Charge Nurse, requesting unpaid leave to care for Mother's final stage of life. She repeated what  Mother's Dr had said about now was the time to be a daughter and that I took mother on for such a time as this and immediately released me from work. I was relieved to have 'special leave' as my position would be filled by a temporary reliever, allowing me to return to work once Mother died.  I had to use up my annual leave first, then apply for a Carer's Benefit, which is a minimal amount. The budget would be tight, but I didn't care. To be able to be there for Mother at such a time as this was important to me. Mother was so happy and relieved once she knew I was going to be home every day with her to look after her. Who knows what the future holds or how long I will be off work. I do intend to return to work and make up for this time off in the future, even though close to retirement age, I love my job.

Excess Disability/Deterioration in Elderly

I have just read Bob De Marco's blog and agree with his experience as he says;

"A popular myth is that urinary tract infections burn and because of this a person who is deeply forgetful can tell you they have a UTI. This is not true." E Coli Bacteria Yes, there is such a thing as a silent urinary tract infection. Silent means no clear cut sign of physical pain, no burning sensation, and no discernible odor", By Bob De Marco [alzheimersreadingroom.com].

My experience with looking after Mother has been to be aware of signs of 'excess disability' which in my understanding is a deterioration or change in behavior not usual for the person, often sudden change/deterioration. Since being aware of 'excess disability' I have been aware that environmental as well as physical issues can contribute to excess disability. Mother has had urinary infection that showed by frequency or mild back-ache. I use a urine dip-stick that Mother's G.P. supplied, and it has confirmed the UTI. Treating it required a double length of time as Bob experienced with his mother also.

Mother also had frequent sinus symptoms, complaining often about her forehead hurting. It was treated with an antibiotic eye ointment wiped just inside the edge of her nostrils to be absorbed through her mucous membranes. Her Dr advised this method as she was very sensitive to medication and the eye ointment was mild enough to avoid side-effects. It worked well and I now only use it if Mother complains of the sinus pain symptoms she had before.

I use also preventatives, for example, 'Karvol' inhalation capsules (suitable for babies), which I cut the top off and apply the oil to Mother's night wear near the neck-line. She loves the soothing smell of the menthol, pine oil, pine needle oil type mixture. Another is 'winter-wellness' which is an immune boosting oral preparation of blackcurrant and manuka honey syrup. Mother also loves a little shot of Manuka honey, Lemon juice and ginger preparation in a mug of hot water to ward off the bugs so prevalent during change of seasons http://shott.co.nz/. So far it has managed to ward off sore throats and snuffles effectively. Mother regularly drinks cranberry juice and I add dehydrated Cranberries to a grated cheese and crated carrot salad I make.

Environment factors can include persons having expectations beyond Mother's capabilities, i.e feeling rushed by support-carers who become focused on getting out as fast as they can due to Agency pressure to increase their work-load when short staffed. Persons who expect Mother to remember something or not recognising when she is struggling to express needs e.g. for the name of something lost or needed. Mother's time disorientation is often lost on family who are not up-to-date with events. This can lead to conflicting messages, particularly when I'm left out of the loop. Mother's vunerabilities need watching over and Mother needs advocating for and protecting.