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.

Attachment-abandonment issues and trusting others

I qualify for have respite care for annual holidays and have to use it or lose it. This means putting mother into a Rest-home while I have a break. That raises many issues for me as I have heard all the stories of neglect and abuse that can go on in institutions. I know they are businesses and the workers are over-worked and not paid a great amount. From observations of my father being in a home before he died, I got the impression it was just a job to many of the workers, and few would go out of their way to assist.

I have been checking out Rest-homes all year, here and in other geographical locations. When I settled on one, in my own mind, I heard a bad report from someone with a relative in care whom they moved due to not liking the treatment of their loved one. I also read the government's audit report on Rest-homes and issues remain.

Can I safely leave mother in a home, I wonder, and trust in their care for mother to prevent a fall or deterioration in some way? Are the workers trained enough, do they have compassion or are they burnt out? (I am aware that lack of compassion is a sign of burn-out).

 From my contact with other carers, most elderly persons resist the change of going into care, even temporarily. Mother is no different, and I feel guilty about wanting a break sometimes.

I decided to introduce mother slowly to the idea of respite care. She knows that one condition of being able to live with me, is that I get a break and she needs to go into care during that time. So I negotiated with mother to spend a few hours visiting and checking the premises and occupants out in a local Rest-home that has day-care, with a view to staying there in future if it was OK. I chose this home because it was close, modern and had a nice atmosphere. I chose trusting my instincts.

I took mother today, as arranged, and mother happily went off with the diversional therapist coordinator and I watched her go. Then I found I experienced a flood of mixed emotions and tugging on my heart as it was then time for me to leave. I said to the manager "I'm having attachment-abandonment issues" and she laughed saying "she'll be all right. You go and enjoy your break, we will look after her". I left... only after she promised to ring if there were any problems. 

I returned home feeling a relief to know she wasn't that far away and was being looked after. When it was time to return and collect mother, she was sitting in the lounge with others, happily playing a group game. As I arrived, mother stood, turned to those around her and invited them to visit. I suggested it would be easier for them if mother visited them. One of the lovely ladies mother had befriended said her goodbyes and voiced "I hope I remember you".

Mother talked much, reporting about her day and different ones she met, and true to form picked up on all the concerns she sensed and began to worry about who was taking care of them and the issue.

Mother appreciated I had been honest with her about going to the home, and I remembered to time informing her, so mother would not have too much time to stress about going. She appears to have liked the environment enough to consider going there to stay for respite care. We will see.

Adjusting to change

I gave up my full-time business and chose to return to work part-time as a Registered Nurse in acute care at my local hospital. This initially was to ensure reliable regular income during recession, not knowing what the future held. I hoped, in time, to obtain full-time work and prepare financially for fast approaching future retirement. After mother came to live, maintaining part-time work became important to enable me to be present for mother. I do need to work, and the part-time income makes the budget stretched. We manage if I'm careful, and Mother can afford the extras she may need.

Thoughts and feelings evolve and I learn alot about myself in the process of this journey.

I see taking on the responsibility for mother as an honour and a privilege. I would not exist, literally, if she had not born me. It also lines up with my Christian values and at the end of it all, I have to be able to live with myself.

There are times the responsibility can also feel an unyielding mental pressure, especially when I don't get a break or plans for a day off are sabotaged by circumstances.

I have found the reactions of others varied; some distance themselves, others feel sorry for me, some look at me as if I am stupid or analytically as if wondering when I’ll burn out or get dementia. I think that as cancer phobia historically was the big “C” to avoid, dementia is now the big “D”,  or shall I say, Alzheimers is the big “A”!

I question myself, and decide regardless of what others judgements are, I will do my best and resolved to make all decisions with a view toward mother’s health and welfare.

I now know ageism exists as I observe other people's (often sub-conscious) attitudes toward the elderly with dementia and their greying care-giving family member. I realise there is a lot of ignorance out there regarding dementia, even in the acute health setting, and shamefully confess I did not really understand the dementia sufferer myself, before taking on the care of mother. Now I can separate the individual intelligent person from the symptoms that mask them!

Sure I was (still am) idealistic, thinking I can be superwoman and can make life as perfect as possible for mother, supporting her through her final chapter of life. Then I despair as I realise I’m human and life is not perfect. It is a roller-coaster ride.

Supporting the elderly at home is a NZ government policy; in their social strategy for the elderly. (It is cheaper than providing full-time residential care). This policy, I've experienced, in reality is only as good as the government funded supporting services or agencies that enable a carer to support an elderly relative at home.

Mother qualifies for full-time residential care, but I believe her quality of life is better living with family, and agree with the government concept. Residential Aged care has been hitting the headlines and appears to have its own issues.

I worry as I wonder about how happy mother really is, and grieve over the changes she has to cope with. She has had her independence taken from her, robbed by the disease, multiple health issues and aging body. She is now dependent on care to survive with any quality of life. She is grieving too. I wonder is my home a prison to her..??

I can see that the roles have reversed, as I become ‘mother’ to my mother, and she is more child-like in her dependence. It is a privilege and is also an uncomfortable role. Sometimes I feel her resentment as she loses things (mother constantly shifts things around) and occassionally accuses me of moving them, she forgets and disbelieves me because she doesn’t remember. After all, Mother is used to being in charge and still bases her reality on her subjective experience and memory. Don’t we all?

I feel guilty if I have to access mother’s account to pay some of her costs. It was ingrained as a child; we would never dare to touch her money. The costs of running the home have increased dramatically and I am aware the NASC assessor told me that if I took on the care of mother, she had to pay her way. How much is that? I’m still struggling with this and haven’t had time to work it out. Mother is financially better off than when she came to live and her savings are growing. The Government is saving money. Wouldn't it be great if NASC provided a formula to assist family carers work out an equal and fair resolution?

Anxiety builds as I notice the stresses on my life and I try to balance needs. I also worry about my future health and finances as reality of being a working-carer evolves. No one will look after, or even know my needs but me, I am slowly realising. I must step up and take responsibility for me, if I am to survive this journey. Blogging is an outlet, and the odd coffee with girlfriends is an escape.

Mother has six offspring and multiple nieces and nephews, grand-children and great- grand-children. I’m concerned about the family that stay away and have distanced themselves from my home. I wonder do they struggle to accept mother is not the same social, outgoing, independent, autonomous adult person she used to be? Don’t they realise how precious time is and the day may come that she won’t recognise them?