Balancing Needs

Mother has just left for Day care. The Bus comes later Mondays and the morning has half gone already. I feel a mental relief when she has finally gone. It’s not that I don’t want her around, it is that I don’t get much space and time to myself when she is around.

Mother doesn’t initiate, and if I suggest to her its time to get ready for bed, she can resist, feeling I’m telling her what to do. “Why shouldn’t she stay up watching TV?” her body language protests. I have to gently remind her that I have to stay up to assist get her ready for bed, and it would help me if we did it now, then I could relax, or go to bed earlier for an early start. Mother can watch TV or read as long as she likes once settled in her bed. This example is typical of a conflict in needs.

Mother, being an extrovert, doesn’t really understand my need for space. Her needs are opposite. Though I must admit she is not interested in being the social butterfly she used to be. Daily coping with basics takes all her energy, and is frustrating for her as she sees her dependence increasing through the ‘disease’. She does love to ‘chat’ though, constantly changing subjects as her focus and concentration changes. “She will enjoy her ‘club’ (as she calls it) today”,  I think.

I make a call to the continence nurse with concerns around change in patterns and deterioration noticed since returning from Respite care. It was good to speak with her, bouncing off my concerns and clarifying my thoughts as we spoke. Mother doesn’t get the usual messages, due to her LBD blocking pathways, therefore it is most likely a UTI, which needs investigating first. Why didn’t I think of that, so obvious now. I note that I need to get a specimen to the Lab when Mother comes home.

 I make a coffee and ponder, what shall I do now? It takes a while for my head to clear of ‘Mother concerns and responsibilities’. I look out at the day. The sky is blue, the sun is shining and my dog Jess is waiting on the decking for me to join her. I look around the house, it needs vacuuming, the washing is on I muse. The phone rings; I have an Alzheimers Committee meeting this pm, so take a mental note not to get side-tracked and forget it.

The day beckons, so I think I will just take a moment to enjoy my surroundings as I write this blog.

The heat is rising (22^o C) and a cicada has began to loudly cackle on the Jacaranda tree beside me. The Jacaranda is just coming out in its mauve blossoms. Jess is happy to have my company and excitedly grabs a doggy biscuit, tossing it around in a game she plays, then settles down to munch on it. The cicada flies off and I hear it in nearby Titoki tree. The neighbours hen begins its usual morning clucking, announcing that it has laid an egg. The morning is quiet, traffic noise in the distance is quiet enough to be a distant hum. I hear the sea breeze beginning as the ground temperature rises. It gently brushes me, as if to quieten my busy thoughts. I make a mental list of things that need doing; the garden maintenance awaits. The windows need cleaning...Mother keeps commenting on cobwebs she notices on the outside of a window (or two). I need to replace my decking which is looking well cracked and worn. I usually spring clean this time of the year before Christmas...it awaits!  I’m either at work or Mother is home with her ongoing needs I think, “I haven’t had the house to myself for days” and relax, “enjoy the moment of peace and quiet” I tell myself, beginning to feel refreshed already. A young tui starts up practising it’s beautiful call. I quietly appreciate the time to enjoy the setting and  pray thankfully for these moments to appreciate the beauty of creation.

Respite Care and Leave

I had put in for a week of annual leave, knowing I needed a break. I had no idea if there would be a Respite bed available when the leave commenced, due to the system not allowing pre-booking because not knowing if a bed would be available.  Mother had been introduced to a nearby Aged-Care Home the previous week, in the hope the bed would become available. There was a person already having Respite care and it was not yet settled for how long and if it would be decided that the person stay permanently. Praise God the room became available the afternoon of my first day of leave; Monday.

I spent the day catching up on labelling all mother’s clothes. It’s amazing how quickly the names fade in the frequent laundry necessary. It is also amazing how time consuming labelling everything is. Mother returned from her “club” (Alzheimer’s Day care) and rested on her bed watching me finish packing. She had been looking forward to going the night before, “like going into school camp” she had giggled, but today she seemed tired and resigned. After I thought I had packed, and was ready to go, mother rallied and suddenly decided on things she wanted to take, even though I had been asking her before and during the process. A mental note to myself; “start earlier”.

I was meant to have mother there by 4pm, but it was well past that by now. The phone rang, to tell me the RN at the Home went off at 5pm and needed time to do the paper-work. It was assumed, (being a RN myself), that I knew the hours the RN worked, which of course I didn’t.  Assumption errors were; that I was expected to ask, and I expected to be informed, not knowing what I needed to ask and thought I had been told everything I needed to know when completing previous paperwork.  I did not know the system.

We arrived at the facility. Mother was taken to her room, while I assisted the RN complete her care plan etc. This raised awareness in me of the process. Blister pack medications were handed over and instructions given regarding other medications.  I then went to see mother, unpack, and settled her in.

After I had returned home, I found details, I had forgotten to mention, regarding mother’s care, kept popping into my mind. Another concern was that Mother, who had been on the waiting list, is now having Cataract surgery two days after Respite care. Would she be kept in good health for surgery? I wondered. So I hate to admit, I stayed up till early hours writing out a Medical and Care document for reference by the Home and for future use if mother ended up in Hospital. It could have been done ahead of time, but with work and coping at home on my mind, I just never thought of it. I delivered this document the next morning; feeling at last adequate info was available for reference in my absence. (see template).

I spent the next two days lethargic and sleeping in spells, amazed how tired I was. Not knowing whether respite care would happen or not had left me suddenly finding I was in the middle of my precious week off with no time to go very far. I asked myself what did I need?  Then decided to pamper myself with a sea-view beach front motel unit in a neighbouring city I liked. So off I went, slightly worried about mother, with her surgery in the back of my mind and relieved to have a break before it.

The next two nights away were wonderfully relaxing. I drifted off to sleep listening to the waves crashing on the beach and enjoyed the setting, finally relaxing and enjoyed some shopping for me! That was enough to refresh me and then I was keen to get home and see how mother had fared with her first stay in Respite care.

Mother had deteriorated in mental clarity, as I had feared due to the affects of change, and was slightly mentally “muddled’. I visited her before she was due home and found she had made friends, enjoyed the setting and was reasonably settled. She did complain about not getting her night time paracetamol when needed, (for arthritic pain) and having to ask for it in the middle of the night. Unfortunately Mother’s favourite skirt had gone missing, and while I was present Mother suddenly had a fall while bending down to look for her missing skirt. Fortunately mother was not injured. I then wondered about dehydration and had noticed her room very warm, a similar setting to when I found Mother originally when she became unwell. I thought to myself “she was reverting back to her old ways. Didn’t the carers understand dementia?” Poor Mother found the staff didn’t assist her choose appropriate clothing to wear and she looked inappropriately dressed for the temperature, and wearing the same clothes three days in a row. She said she missed me getting her clothes ready for her.

On return home, I found mother quickly resettled into her familiar surroundings and routine, glad to be home. She took a couple of days to sharpen up again and it took a while to get bowel routine re-established due to not having her medication each evening.  Mother reported she being given “tablets” for her bowels and they gave her diarrhoea, instead of the prescription powder in a drink she usually had. I noticed the powder had disappeared from the container and wondered if it had been given to the wrong patient. Mother did have another person’s mail given to her I reasoned. I had heard first hand of a similar story of a medication mix-up in another facility during Respite care, and was thankful mother’s was not as serious. Maybe one RN and untrained carers was not safe enough for the numbers of residents (50) that were being cared for??

My belief that mother’s quality of life and care was better by living at home has been reinforced.