Adjusting to Change Stage 4

It has been nice to be home as a full-time carer with Mother. The sad part, of course, is witnessing the slow gradual deterioration that occasional takes a step down. This happened over the Summer period. I noticed Mother relying on her arms more as she walked, and she became heavier to manage getting in and out of her chair or bed as moving became more difficult for her. I was worried about the heat wave we were having, and blamed that. I was so focused on Mother's heart issues that I lost sight of her Lewy Body Disease.

As time progressed, one morning, Mother lost the ability to stand! She went to Hospital for investigations, and the outcome was Lewy Body Disease, with messages for 'standing' blocked. There were more changes in her brain scan also, producing some Stroke symptoms. Loss of mobility had come on gradually, but wasn't obvious until standing ability just stopped one day.  Bowels and bladder were also affected, so caring for Mother was now like for a 'Spinal' person. I feared managing Mother at home now she was so heavy, as I didn't want to wreak my back. I even went as far as putting a room on hold in a Residential Home for Mother! 

During the time Mother was in Hospital, the OT and Physio persons were great. They introduced Mother and me to a 'Standing Hoist' which supported Mother's back and knees as she was gently raised on to her feet for transferring from bed to chair etc. I became involved in managing Mother's cares and confidence in managing her grew as I realized I had to change my thinking and be more realistic with Mother's new routine.

Eventually I realized Mother would still be better looked after at home, and discussion with her Consultant confirmed my thinking. The Hospital OT arranged for a hoist to be delivered Home, after inspecting Mother's room for the space required for it's use. Mother required Ambulance transfer home and a new phase in caring for her began.

Mother now requires two persons for her Hoist transfers (this is a mandatory safety requirement). NASC hours for a support carer to assist me with Mother's care haven't changed. Mother has all her cares on her bed now before we get her up with the hoist into her chair for the day. She feels safe at home and I'm glad to have over-come the mental hurdle to cope. Family support remains distant and unchanged.

Answers Found

Mother often would ask “why?’ repeatedly when she became distressed over the stupidity of Politics, seeing disasters and suffering, observing wars, famine, corruption and poverty on TV. I would be at a loss to explain it myself. We both had faith in God, but He represented love. How could this be happening? It didn't seem fair.

I looked at my own life since taking on the care of Mother. I admit there have been difficult times as I had to adjust to suddenly stopping work, when enjoying my job and not intending or feeling ready to stop yet. The sudden change of plans and removal of my ‘independence’ as I became tied to 24 hour care-giving left me feeling lost. What was happening to my life?

Mother may die soon. Facing her dying was scary. How would this journey end?  Life seemed out of control. Sometimes, when tired from disturbed nights and not being able to switch off in case needed, I would feel sorry for myself and have to work on my attitude. Life had thrown me a curve ball and it didn't seem fair.

Other times during my life I had observed others seem to have really great lives, the sort I could only dream about. Others have got away with corruption, evil and oppression. Death has always been an enemy, to be feared. It was depressing and I didn’t feel comfortable with ‘life’ in a world that is so unfair. 

Then one evening I was watching a new channel on TV (‘FirstLight’) and found answers so simple yet revealing a deep inner truth to me. It excites me, so I just have to share it here. 

As a Christian, I always knew the bible promises one day Jesus will come again. Silly how I never connected before that when Jesus comes, He will put things right! Wars, poverty, injustice, pain, illness, death, loss, grief, hunger, suffering, loneliness, rejection, hate, inequality, aging, strife, oppression, lies, violence, stigmatization, corruption, will all be dealt with and put right!  What a wonderful revelation. Thank you 'FirstLight'.

One day all that is unfair in life will be put away and Jesus will put it right. What a hope to look forward to. At death Christians like Mother can say “goodbye until morning”. It’s not goodbye forever. Christ shall come again and we shall all be raised. What a reunion! When I see all that is unfair, I know this world is not my final home. That is my answer to unfairness in life here ☺

Looking at beautiful creation

NZ is just changing free-to-air TV channels from analogue TV to digital TV which gives a fantastically clearer picture. We have discovered one channel called 'FirstLight' which has wonderful scenes of nature; mountains, country-side, flowers and animals in nature. It has a regular intermittent program called "Moments of Peace" that has relaxing music playing as the scenes change. I find it a great way to refresh my mind & spirit, particularly when busy and tired. It only takes me a few moments, then I carry on. The TV channel can be found online here  http://www.firstlight.org.nz/watch-online 

Mother enjoyed another particular program that gave glimpses of our wonderful universe, also through FirstLight TV. The resource can be found on www.creationastronomy.com  Mother finds looking at the planets and their beauty wonderful and exciting, reaffirmed in her faith and marveling what a wonderful artist her God is. Going 'outer-space' is a lift from her present surroundings.

Mother's TV escapes

Mother appears to have stabilized with no more collapses, though slow progression of her condition continues. Days are routine with activities paced to Mother's ability to cope, with a half or whole day a week spent in bed now. Mother seems to need a day or two of rest to cope with the rest of the week getting up in a chair. Times of breathlessness are regular and more sudden with the slightest exertion. She tries to keep her legs mobile, but they are weaker and she has become progressively slower. Mentally Mother has improved from her last collapse, with her memory good some days. She still retains an interest in everything going on around her and makes her wishes very clear. She is at peace.

It seems the less active Mother is with physical limitations, her inner life becomes more active. Mother has given permission for me to share some of these stories and happenings that she speaks of.  

 

Often when watching scenic or travel type programs on  TV, Mother will turn to me and ask "have we just got back, or have I been here all the time?" She laughs when realizing she had 'escaped' into the program for a while and finds it refreshing. 

 

One evening in bed, after watching an animal rescue program, Mother reasoned with me saying that "I really was there standing on the bank (where the cow was in the water) because I felt the splash!". She looked down to see she was in bed and then laughs. Now that is transference!

 

Because transference is very real, I have guided Mother away from watching anything too spooky, gruesome, scary or violent.  Favorite channels for her are Travel, talent , geographic and nature shows.

Adjusting to Change Stage 3

Mother was stable and manageable. I felt we were in a good routine and I knew her well enough to nip any infections in the bud. The regular assisting Carers were trained enough by now to know Mother's routine and standard of care expected by me. I even found myself thinking "I may be able to do more hours at work and save for my son's graduation in the USA". Well that thought went out the window fast when everything changed one day.

May 21st 2012; Mother was happily sitting at the kitchen table (on her walker) after assisted shower and breakfast. I tidied her hair that had just been washed when Mother began to act uncomfortable. She said she wanted to lay down, so I quickly pushed her on her walker to her room to lay her on her lazy-boy chair. Just as we got to the chair, Mother suddenly collapsed (like she did before at the hair-dressers). I was all alone and Mother looked dead! With an adrenaline rush of strength, freaking out, I managed to lift her 80kg body off the walker seat and lay her on the floor, on her side as I knew from experience that she may vomit when (hopefully) she came round. I pressed her emergency alarm and then covered Mother with a warm blanket and supported her with cushions. The St John Ambulance personal spoke to me through her alarm bedside speaker and reassuringly said the ambulance was on its way. I could see Mother's pulse had returned and she was breathing again. As the Ambulance officers were lifting Mother onto the stretcher, Mother woke and said amazed "Oh, I'm on the floor!". She then vomited every where and was taken off to the Emergency Department at our local hospital. I followed with a change of clothes etc.

The outcome was that Mother is now at a stage where her Aortic Stenosis is now severe enough to be causing collapses more frequently, she is damaging her heart each time as with a heart attack, and she will take longer to get over it (if she does). Her likely-hood of sudden death was now within two years. I knew this day was coming, but was stunned when it did. Mother spent 5 hours in ED before she was well enough to take home. We went home, knowing that returning to ED with collapse was not an option in future, as Mother was now at a terminal stage of her disease processes. A referral went to the Emergency Response Team and Palliative Care for all the support I needed to look after Mother at home.  She spent most of the next 5 days sleeping a lot. She was tired and weak, just like someone who had had a large coronary. I spent my time dealing with visits from Ministry of Health (NASC), Occupational Therapist, Social worker, Doctors, Nurses and the Care Agency arranging a smooth transition of care for Mother's needs.

Mother has recovered enough now to walk to the lounge some days, but most of the time we use a wheel-chair to move her around the house. Her day is spent lounging in a lazy-boy chair (comfortable enough to sleep in), either in her room or the lounge. She has a Roho cushion on her chair for pressure relief as she is prone to pressure points. Mother now has an electric hospital bed with a pressure relief air mattress. She loves her new bed with foot and head elevation at the touch of a button. Raising and lowering it assists her to get out or protects our backs as we tend to Mother's cares including bed bath. Showering is only done when Mother feels up to one, and two of us are present to work as a team in military precision to minimize time Mother is up. The shower can bring on a 'funny head' and near collapse if any longer. There have been a few near misses as Mother's unpredictable fluctuations in Blood Pressure are triggered by her Aortic Stenosis. The other symptom she gets that can also come on suddenly is Shortness of breath and a  wheeze ( has been called Cardiac Asthma) from Pulmonary Oedema. Palliative Care are only a phone-call away if needed. Mother's ability to do simple tasks requires supervision and guidance in most activities now. I have a portable 'door bell' which I keep near so she can press the button at her end when she needs me. That has assisted me to sleep a little better at night.

I know I have taken on Mother's care for such a time as this and have taken 'special leave' (unpaid) from my job to look after her. Mother feels safe with me around, and is so happy I am here all the time now. She has been openly discussing death and Pastor is visiting regularly. Mother has reaffirmed her faith in Jesus, so we are assisting her to prepare for her future. More next time.

Faith and special moments with Mother

It has been a while since my last post and life with Mother has been busy as usual. Since that 'awful morning' when she didn't know me, I followed the advice of a dear friend and prayed that Mother would never forget her children and significant others. Mother loved the reassuring prayers on settling each night and has steadily improved.

We went through summer and are now heading into autumn. The only incidents over summer were a heat rash that appeared in her folds that didn't respond to the usual anti fungal creams. In the end I used a general antibiotic for common skin bugs and instructed the carers to use an antibacterial liquid soap under her folds and thank God her rash cleared! I then thought about how Mother had managed to get through hot weather in the past without the same problems. She had, in her wisdom, used deodorant under her folds. I re-instituted this routine and the rash has stayed away :)

Mother turned 88yrs old last week. It was a week day and to make the day special I decided to arrange afternoon tea with Mother's great-grand children that were available to come. I remembered one,a three year old saying to her mother one morning, on her sister's birthday  that "she wasn't 5 yet because she hadn't blown her candles out on her birthday cake!" So I thought I would use this symbolism to impress the children (2yrs to 9yrs old) how old great-grandma was by putting 88 candles on her cake.

Well it turned out to be quite dramatic. Without realising the cumulative effects of so many candles, I innocently began lighting them. They were burning fast by the time I finished lighting and I even had to get my husband's help to speed up the lighting process. By the time they were all lit and I began carrying the cake across to where Mother was sitting, the flames were getting over 10cm high. I began to worry as I felt the heat and saw her 'Happy Birthday' decoration catch alight! It was fully burnt up by the time I got to Mother, frantically asking for help to blow the candle 'fire' out. I noted the girls all withdrew and my grandson's (5 & 9 yrs old) long with my husband came to the rescue and blew the candles out. Mother had looked apprehensive as the cake arrived, but thoroughly enjoyed the bit of drama. The cake top was uneatable with candle wicks  left sticking out of a melted wax and plastic mess. Luckily I had bought another cake that was Mother's favorite. The birthday cake was chosen for size to accommodate all the candles. A great time was had by all.

A dreaded few hours one morning

Mother's dementia has been reasonably stable and the focus has been on managing her heart failure which fluctuates daily. I found myself thinking Mother's physical problems were worse than her dementia. The reality that I cannot take anything for granted was brought home to me one morning with a sharp wake-up.

One day last week, Mother was up at 5am and was her usual bright self when I assisted her. Mother said she had been "travelling all over the place" (in her dreams) chuckling as she walked to the toilet, then on return was resettled, happy to have more sleep. Mother woke three hours later, and after her support carer (m) arrived to assist with showering her, Mother worriedly confided that she didn't know who she was. Telling (m) that she knew she lived with people who cared for her, but didn't know who they were. On questioning, Mother knew she had two daughters, but didn't know where they were. She did not recognise me when (m) came and got me.

I was shocked, but calmly sat and listened, filling in the missing bits as Mother talked. She eventually recognised her head was all mixed up and as the morning went on, Mother's memory gradually cleared enough to recognise I was her daughter by lunch time. I guess this is the first of more episodes to come as her dementia deteriorates. I shared this event with another friend whose mother had Alzheimer's. She said that they prayed their mother would never forget who they were, and their prayers were answered. Although deteriorating, till death a year ago, my friend said her mother always remembered her children. I resolved to pray and hope for the same blessing.

Since that episode, it was a joy to walk in one morning to be greeted by Mother as normal. Then she said "you are my lovely baby daughter. Do you remember when you were a baby and we had an outside toilet. Father would hit you hard for wetting your naps?" I said "how could I? If I was in naps, I was too young! I'm glad I don't remember that!" We both laughed.

"I'm Me and I'm Back!" Mother announced this morning.

The last two weeks have involved watching Mother go through an increase in heart failure with all the tiredness, lack of appetite, clamminess, shortness of breath and times of near collapse indicating she was in a very intrepid stage of health. Intense monitoring, high protein diet and medical management was necessary in hopes to prevent progression into the feared Pulmonary Oedema or Cardiac Ischaemia effects that could be fatal. Mother has also been confused at night and on waking, often not her usual morning bright self and her memory had deteriorated for simple daily repetitive tasks she usually did automatically. This required an alertness to the extra help she needed, as well as regular checking for when up confused at night and had become routine. In the back of my mind, her Lewy Body Dementia symptoms pattern was often over a fortnight, but her physical symptoms had dominated. Her sudden change in hearing-processing effects gave a clue, so I wondered. I met with Mother's Dr and he confirmed that her health has progressed to a stage of symptom management only. Her respiratory centre, we know had deteriorated and was a indication of the condition of her whole body systems. He also reminded me that her dementia is a disease process that does deteriorate inspite of all the preventative measures we like to initiate. We decided to commence an antibiotic to cover any unknown mild infection (i.e. sinus or UTI) that Mother has not been able to tell us about. It was guess work, but worth a try as that could explain an increase in confusion. The Digoxin was stopped also due to side-effects and gradual deteriorating renal function. We both agreed that Quality of Life was our aim concerning Mother. I felt so sad as the impact of Mother's mortality and life-stage hit me again. Last night I settled Mother as usual and prayed with her asking Jesus to keep the confusion away. Praying is something Mother had done in her working life as a nurse. I remember her telling me, when she worked in a geriatric ward, that she sensed some of the elderly were afraid to go to sleep at night incase they never woke. So she, along with other staff members, always prayed with them on settling. I thought that was a lovely way to comfort the aged in their need and thought Mother deserved the same comfort, so praying had become part of her settling routine; shared between a Christian care-giver, my husband and myself. Mother slept all night, and woke 5am still dry, and alert! I commented on this as I helped her get out of bed. Mother looked at me and announced confidently "I'm Me again and I'm back". I pray she stays 'back' with us, realising that some of her LBD pattern had probably just happened again, hidden by her medical issues. At breakfast Mother mentioned casually and matter-of-factly, that she had been 'talking with her bridesmaid' who had been visiting her (in the night). My husband and I looked t each other and smiled. We were back to 'normal' of sorts. Her life has been on a complex roller-coaster ride of symptoms, that I hope will settle for a while, but realise there are no promises.

Adjusting to Change Stage 2

Stage One was Mother coming to live with me, in need of care.
Now Mother has suddenly (it seems), come to a stage where I fear she will not be with us as long as hoped or planned. I find myself evaluating every decision and rechecking if there anything more I could be doing for her to enhance her life. I fear for family that have been distant for a variety of reasons, some do not accept Mother needs care, let alone are ready to face her life ending. I understand denial is part of grief, as is anger and 'if only' stages, before acceptance. It is common for family members to be at different stages of their grief process and at odds with each other. How can we pull it together for Mother I pray?

My hope is to nurse Mother through to the end. I am adjusting to the practicalities of doing this, as I may need to give up work. I have seen many deaths over thirty years of nursing, and feel the least I can do is support Mother through her final season of life. We speak the same language, having nursing in common, and are able to communicate freely regarding these issues. That is not to say it is sad. So very very sad, and we support each other through the grief and losses as they build up.

Mother is bright enough, even openly talking about her funeral instructions now. Her mild Dementia seems the least of her problems at present. Her lack of physical activity in the past, I now understand was more due to physical heart problems than Dementia issues. She now says she wants a military burial. I don't know how to work that one out yet. Life is a precious gift from God, and I value every moment with Mother.I don't want her to leave me / us, the thought is unbearable. Family need to prepare as they obliviously continue their busy daily routines, and time races by.

I have sent the family an email to prepare them, and hopefully they will pick up on the invitation and opportunity to spend precious time with Mother. Every moment she is alive is so precious to me and my husband. I don't want these moments other family members can have with her to be lost for-ever, due to not being in tune to what stage Mother is at, hence the following (edited) communication. Note boundaries communicated were necessary due to some members that are angry and abusive in their grief and misunderstanding through distancing and refusing to communicate.

Letter to Family,

1. Update on Mother:

• Mother, as you know is on a path of subtle, slow, continuous decline.
• One reason I chose to look after her myself was because I understood the complex medical issues she faced and the difficult path ahead of her.
• I am liaising closely with her GP and we are using all our skills to keep her functioning as optimal as possible. This has meant taking her blood pressure and oxygen levels, and adjusting her medications to keep her balanced between perfusing her brain and limiting her heart failure.
• Inspite of the above, Mother continues to slowly decline. Her heart is struggling to pump out against her narrowed main artery (Aortic Stenosis). Her heart muscle is weakening and will worsen as time goes on.
• The effect is heart failure, which is a backlog of fluid build up in her lungs and struggling to breath.
• Her narrowed Aorta also can cause her Blood pressure to fluctuate up and down, making it difficult to work out what is going on with Mother’s symptoms. (That is why I sometimes take her blood pressure).

2. Prepare for the future:
The reason I am writing is to update the family and prepare you all for the next stage. Mother’s Dr says that she is entering a very tricky stage. Those of you that haven’t been around her will be struck by how frail and weak Mother is now.

To prepare you all on Mother’s status to date;
• Mother’s fall at Sherwood (pre last hosp adm), and collapse at the hair-dressers are signs to expect the unexpected.
• Mother now has difficulty making it to the toilet and back some days as becomes too short of breath or weak. (We sit her on her walker to wheel her during these times).
• She has not been able to go to her 'club' the last 2 weeks, being intermittently too short of breath.
• Mother's Dr has recently diagnosed Mother is having a ‘Cheynne Stokes’ breathing pattern, which means she stops breathing in her breathing pattern intermittently, but regularly; day and night. Mother doesn’t notice it happening!
• But she does notice times of sudden shortness of breath, which may be related to oxygen levels just before she starts breathing again. This is separate from the heart failure issue and related to her brain breathing centre deteriorating.
• Mother’s Dr has recently made him available for me to ring or fit Mother to be seen in any time now and doesn’t charge!
• He keeps a close eye on how she is doing and says she is on the verge of pre-palliative care now.
• Our focus is on quality of life. Mother in herself is very happy in her environment. She loves her room and doesn’t like leaving it at present. She is living in the present and is realistic about the stage she is at.
• Her only concern is that her children are not all getting along with each other, and are distant with me.

3. Communication Issues:

I know I have been criticized for not ringing everyone to update about Mother. The reality is that I have my plate full with Mother, and it is not my job to be running after five siblings, their partners and adult off-spring, let alone cousins etc! If you want factual information, I am available to talk anytime. You can ring me on my mobile to get an update. The home phone switches to answer-phone if engaged etc, and you need to leave a message. I can txt good times to visit or ring back when requested. I cannot afford the toll calls to ring everyone back, and would prefer that you make a time with me to ring back.

Please note that I expect communication to be civilized, honest and with respect. Please realise, that when working against me and not communicating with me, you are also affecting Mother’s quality of life. Thank you.

Drama at the Hair-dresser's

Mother had missed her last hair appointment due to my being away and her carer forgetting to take her. Consequently she felt her hair was scruffy and was impatient to have her overdue haircut. I rescheduled an appointment asap. 

At 2am Mother had been up and vomited on the toilet floor. I resettled her into bed and cleaned up the mess, wondering that maybe she had a tummy bug that was going around. Lots of viruses seem to circulate at the change of seasons and we were just coming into spring. Mother slept in and rested most of the day. She seemed tired, so when it was time to go for her haircut (late afternoon), I suggested that maybe we reschedule if she didn't feel well. Mother, determined to go to her hair appointment, grabbed her walker and said "I'm going!" in no uncertain terms. So off we went.

On arrival at the salon, mother was welcomed by her hairdresser saying how much she had missed her. Mother's hair was styled back into it's usual smart shape, and as the hair-dresser was just finishing, Mother began to behave differently, pulling her drape up over her face. I rushed over thinking she wasn't feeling well, as the hairdresser bent down and asked Mother if she was OK?
Mother dropped her hands and turned toward the hairdresser then became unresponsive! By this time I was beside Mother and could see she had dilated pupils. I felt no pulse and saw she wasn't breathing! My RN training kicked in and I instructed the hairdresser to dial 111 and get an ambulance. As she ran to the phone I grabbed Mother under the arms & lifted her onto the floor, knowing she needed to be flat to perfuse her brain. Split second thoughts raced through my head, as I prepared to commence CPR.  I assessed her, checking for breathing and lifted her jaw. Mother looked dead!  I was aware of thoughts like "I've lost her" "it's not meant to happen this way!" As I lifted Mother's jaw and watched for signs or breathing, I noticed Mother's pupils constrict. I knew her heart must be beating again and then saw her take a breath and groan. To my relief Mother was alive! She had been unresponsive for at least a minute. I quickly turned her onto her side (recovery position) and then Mother vomited. Luckily I was able to catch and contain with the towels as I was aware of customers arriving. The ambulance arrived and Mother was taken to hospital. I checked with the hair-dresser, who was in shock, and gave her a hug as she burst into tears. After reassuring her, I followed the ambulance in my car. At the hospital Emergency Department, the ambulance officer showed me an ECG strip of mother's very slow heart-beat (extreme bradycardia) occurring just before Mother vomited again in the ambulance. Dr's assessed bloods and gave mother IV fluids. The final conclusion was a 'vasovagal' episode from what was most likely a tummy bug, combined with nausea and fluid deficit.  After six hours and Mother had perked up with the extra fluids infused. She demonstrated ability to mobilize and I thankfully got to take mother home. Mother has gradually come right, but I have found her blood pressure low, requiring another medication review. The suddeness of this event reminded me that 87yrs old Mother could go any minute, and we do not get to a choose convenient time or place. That is a fact of life and death. I must add that Mother gleefully says "I'm glad I finished my hair cut!"

A Christmas Holiday Break with Mother

Christmas Day was very quiet this year, with just Mother, my husband and self present. We thought children and great grand children were coming, but they decided to leave earlier so as not to miss their camping spot at an East Coast Beach. My other two sons were having Christmas with their wife’s side of the family. We were disappointed, but the plus side was less work and effort was required for the day. It turned out to be a pleasantly relaxed Christmas. My husband cooked a turkey and leg of lamb, as he usually insists on doing. . .more suited to the Northern hemisphere cold, I thought, but appreciated this was his thing that he liked to do every year, regardless of hot summer temperatures. (A tradition brought out by early settlers from the Northern hemisphere).

Mother was funny when I first told her we were having turkey. “Turkey!” she said screwing her nose up. “I don’t like them!” “Have you ever eaten it?” I asked. “No,” she answered, “I’ve never eaten any, but I don’t like them! They’re awful, they wear black clothes . . horrible things!” she said screwing her nose up again and shuddering. I wondered if she had a traumatic turkey encounter as a child and asked her. She told me she had seen some once in Blenheim, but didn’t remember anything else, just that they were scary horrible things. Mother eventually decided to try turkey after a support worker told her it was similar to chicken. Of course, having a sweet tooth, she loved the desert which included traditional pavlova with strawberries and cream topping.

The day after Christmas, we decided to travel up the Coast to visit the kids and see how their camping was. It was a trial to see if we could take Mother camping. The trip took 40 minutes, which mother said was too long. The beach was beautiful, white sand and blue sky, with the peaceful rhythmic sound of waves crashing and rolling onto the shore. The kid’s camp was on an elevated grassy spot above the beach with a fantastic view. We had taken fresh bread, tomatoes, cucumber, lettuce and ham for lunch, which we all enjoyed. Afterwards  my husband and son walked off down the beach to go fishing, while mother and I stayed with my daughter-in-law, enjoying the 2yr old and almost 4 yr old grand-daughters, who excitedly kept us entertained. After a while mother looked sleepy, so we helped her onto the large double sized blow-up bed for a rest. It was difficult getting her back onto her feet afterwards, but we managed, and she managed the chemical toilet OK, but found the ground uneven for walking, even with her walker. It took a bit of effort in assisting mother in the different surroundings and we were ready to go home after a few hours. The trip home seemed longer for mother and she decided that it was too far to go again. Anything over 30minutes long seems to be to far for mother these days.

After a couple of days home, we were pleased to hear mother’s youngest son and his wife were coming to stay. Mother was excited. It was great to have them present and mother constantly smiled with pleasure. Mother announced that she always used to stay up with her mother to wait the New Year in. We decided to do the same with her, but at 8:30pm, mother suddenly announced she was off to bed and had lost interest in seeing the New Year in. “It was silly” were her words as I settled her for bed.

Our city always had a New Year’s Day fireworks display which I thought may be of more interest for mother the next day.  With the extra hands to assist, I suggested that we take mother for a walk up the path beside my home to see the New Year’s Day fire-works that were held in the evening nearby. Mother was wrapped up warm and we walked her to the spot, then she sat on her walker to watch the display, which happened just along the river, where two river’s meet. From where we were the reflection of the fireworks could be seen in the river, as well as above it, as our spot looked down the river towards the venue. Further down the river banks were crammed full of spectators and a band was keeping them entertained as we awaited the darkness required for a good display, which was later in the summer in NZ (9:30pm).

Mother loved the display and was excited like a child throughout. As soon as we assisted her walk home though, mother went straight to bed, exhausted but happy. The next morning mother was up ready to go somewhere, so we took her shopping for new shoes she wanted. I noticed mother beaming at everyone she came across as we escorted her into the shop. I think she felt special and proud having more family with her. That afternoon, we took mother to visit another son and his wife, who live locally.

It was later at dinner time I found mother changing her patterns.  A sign, I realised, her LBD symptoms were resurfacing. We‘d had almost a week free of the worst. This particular night Mother became unreasonable about a table knife  she decided was hers and insisted on taking it to her room, where she would hide it. I knew the routine, as we had been around this circuit before. I immediately wondered if mother had been drinking enough water in the hot 27-32^o C temperatures. Mother later, insisted on wearing PJ’s under her night gown, on a hot night! I went with the flow, and kept alert for more activity. Later, as expected, in the middle of the night I found Mother up sitting on the side of her bed, confused and talking about a bill a man said she had to pay. She had been hallucinating, so I guided her that nothing could be done about it till morning, and she let me resettle her in bed. Mother appeared OK the next morning, though tired and not quite herself. I guess all the excitement had it’s toll, but the pleasure mother gained from the week was worth it. Luckily the symptoms settled after a couple of days back in her normal routine.

Mother and her Cataract Surgery

Mother has been on the waiting list for surgery. She was quite impatient to have this done as her eyes had deteriorated to not being able to read the eye chart, only see three fingers held up in front of her, with the worst eye on her last examination. Well the day finally arrived.

I got Mother up and showered her early, as we had to be at the hospital by 07:30am. We went to the ward for day surgery and waited, as preparatory eye drops were intermittently inserted.  The risks had been discussed with her G.P., Mother and myself. (She was a general anaesthetic risk). It was important that she have surgery for quality of life as reading and watching TV were important past-times. At present seeing TV was even becoming blurred. Mother was last on the morning list, and became anxious about falling asleep on the table, as we waited. The surgery was to be performed under Local Anaesthetic and the decision to go ahead depended on Mother's ability to stay awake and very still as instructed. Mother was worried because she often fell asleep in the mornings, and if she did, would forget where she was and wake jumping and flailing about with fright!

I became concerned as I saw mother beginning to doze off while sitting waiting in the Day Ward chair. "She hadn't slept much the night before", I remembered. After a while I asked one of the nurses if Mother could have a bed to lay down on. This was not the normal routine for the Cataract surgery patients. They usually sat in chairs, then were wheeled to surgery and back in a wheel chair. Fortunately the nurse was obliging and mother was put onto a bed, where she immediately went off into a deep sleep. Being last on the list was working out well because Mother was now spending her waiting time having her morning nap. 

I woke Mother as time to go approached. Made sure she toileted so Mother could relax without worrying about that. She had taken her usual medication early and I knew the diuretic would have acted as she slept. (Important so she wouldn't get heart failure laying flat for the procedure).  Mother was wheeled on her bed to the Operating Theatre and provision had already been made for me to attend, (dressed in a theatre gown). Praise God, I had two months previously been asked to do holiday relief in Theatre PACU (Recovery) and was working there at the time of Mother's Surgery (I did thankfully have her Surgery day off though)! My faith told me He had gone before us preparing the way for Mother.

The Theatre staff were wonderfully supportive. Mother was assisted onto the table and there was a place made for me to sit and hold her hand. Mother was draped with oxygen being feed under the drapes to assist her. The "handsome young surgeon" (Mother's description) spoke reassuringly to her throughout the procedure. The eye was anaesthetised. Mother kept very still and focused throughout. The procedure went well, with Mother's clouded lens scraped out under the microscope and a prosthetic lens implanted in it's place. The surgeon announced he had completed and the procedure went well. Mother's eye was dressed. The drapes were removed and I lent over to tell Mother we were finished. She beamed at everyone and I took her home to recover.

I don't know what zone Mother had entered during surgery because the next morning she told me that when I lent over and to tell her it was finished, Mother was thinking to herself "that's my daughter and she's all grown up. Old now . . like a mother"!!!! I'm just glad she didn't say it out loud before my colleagues.

Mother had her eye dressing removed and examination first thing the morning after surgery. Praise the Lord, instant improvement! Mother can now read three quarters of the eye chart without glasses with that eye. She is very pleased. Blessings to all those involved. 

Getting Ready for Respite care

Mother needs to go into respite care, or should I say I need mother to go into respite care, so I can have a break during my week of annual leave. Her only experience of being in a Rest-Home was when she was unwell and needed an emergency admission to the hospital wing. When I collected her and brought her home to live, mother felt she had escaped and never wanted to return. Needless to say, to mention respite care brought a negative, anxious response from mother.

I had leave coming up and the issue couldn’t be avoided. The issue of getting mother into respite care worried me. I sought advice and other carers told me they just announced it when it was happening, to lessen time for negative reactions. This did not sit well with me. Although I could understand that in some cases it was necessary, I didn’t want to sow seeds of mistrust in my relationship with mother.

My plan was to introduce mother slowly from an unexpected angle. I checked out a neighborhood Rest-Home and made arrangements to take mother to visit, booked for day-care that day. I told mother the evening before, that she was invited for lunch to meet some neighbors, so she could make some new friends in her age group. That it would be good to extend her social contacts. I also said it was an opportunity to check out the place to see if it would do for future respite care.

The day arrived and mother was curious about the place. She saw it daily, as we drove past. To my surprise, she decided to walk with her walking frame to the Home, instead of getting into the car. After arriving mother was introduced and said a quick goodbye before happily going off with a staff member, to explore the place. She knew I would be back to collect her around 2:30pm. I stood there before leaving, surprised to find I was feeling a familiar feeling, similar to when I left my child on their first day at school.

Later, when I arrived back at the Rest Home, I found mother was happily settled with a group. As soon as she saw me, she stood, turned to the others and invited them all to visit. I had a imagination flash of a raging geriatric house party in my absence, and suppressed the urge to laugh, as I suggested that it might be better for them if she visited them. We didn’t want anyone falling over in the uneven driveway.

Mother went off to her usual (Alzheimer’s) club the next day and told of her visit to the Rest Home. She enquired about it and other’s experiences, if anyone had been there. Mother came back with confirmed reports that the Rest Home was possibly a good place to stay. Some of her club attendees had stayed there.

During the following weekend, I took mother shopping. We found an electronic clock-calendar and photo viewer with a radio. I loaded it with just under 476 photos. Photos ranged from ancestors, mother’s childhood, marriage, children, siblings & children, grand-children and families, especially the babies in the family. I also added some of the garden and familiar home environment. Mother loves it. She has it placed on her bedside table and can see the time, day and date on one half, while the photos slowly rotate on the other half. She feels it says who she is and finds it is comforting. I decided it was time to tell mother there was a vacancy coming up on Monday and I would be able to take a week’s holiday, starting that week. Mother immediately said she would like to take her electronic photos with her.

During the afternoon and evening mother would mention different things she needed to pack. I reassured her that I could do the labelling and packing while she was at club, that I would take her when the time came and get her settled. Mother was excited. I said to her “is it like going on a school camp?” Mother answered chuckling, “yes, it feels like going on a school camp”.

What happened at the hospital today?

Mother has been on the waiting list for cataract surgery and has been anxiously asking how long she will have to wait, as her eye-sight has been clouding over. Watching TV and reading her favourite magazines were very important to her and becoming increasingly difficult to do.

I was contacted yesterday and told that Mother was finally on the surgery list for ten days time. She was required to attend the hospital for eye measurements and a pre-admission clinic today. So I decided last night to tell mother the good news that she finally was booked for surgery, and to keep the news of the pre-admission appointment for just before she needed to go. I knew that if I told mother about her appointment, the night before, she would be up 4:30am worrying about ‘what time she was going’ and have ‘would she remember to be ready’ anxiety. My strategy was to allow a restful sleep thinking her next day would be the usual routine. I did tell her that she would be having a pre-admission appointment sometime soon.

The day started as usual and mother happily went off to day-care. I told her I would be dropping in for a meeting later, which was true as the monthly carers meeting was in the afternoon. I rang the centre to inform the staff that I would arrive to take mother to an appointment later that morning, and ensure she would be there and not on an outing. This gave me time to collect all the medical history and medication information etc and fill out the necessary pre-admission forms.

In plenty of time before mother’s appointment, I arrived at day-care and told mother the hospital had made a pre-admission appointment for today and I would take her over now. Mother excitedly went off with me. We didn’t need to go far, as the Alzheimer’s day-care is in one of the hospital buildings.

We saw the medical technician first, who happened to remember mother from when she had worked at the hospital. Mother had numbing eye drops inserted and her eye measurement tests done after a preparatory explaination. Mother asked questions and was very happy to talk about her eyesight deterioration.  

We then walked down the long corridor and took the lift to the second floor where the pre-admission interview took place. Mother keenly shuffled along at a fair pace (a gentle stroll for me), and I joked with her that she was getting some exercise, offering for her to sit and take a breather if she wanted. But there was no stopping as Mother was on a mission. At last something was happening about her eyes!

At the pre-admission clinic, appropriate forms were checked, more were completed and questions were asked. Information on the surgery and follow-up was given and then time and date for presentation at the Day ward for surgery was given. The interviewing male nurse talked fast and mother giggled intermittently. I wondered how much information, or actually what mother was hearing. Lewy Body Disease often affects processing information heard. It can often end up received as a totally different message.  I was thankful to be there to hear and reiterate later as required. Then we left for the Laboratory and a blood test. Mother was taken in a wheel-chair to relieve her from a long walk back in the direction we had come. After the blood test, we went back to mother’s day-care and she ate a late dinner that had been kept for her. I went to the care-giver meeting and mother stayed for the early afternoon, and then went home with her usual transport.

After I had been home a while, mother seriously said she wanted to talk to me. I sat down and waited. Mother asked what had happened at the hospital, as her eye-sight wasn’t any better and she looked disappointed. I slowly explained that she had eye measurements for the replacement lens to be ordered for surgery and then she was checked to see if she was fit enough for the surgery. “But what happened to my eye? My eye isn’t better!” mother exclaimed. I repeated the information, emphasising that she had eye drops for the measurement test, then a pre-admission check. “You haven’t had the surgery yet” I said “it’s in preparation for surgery in December”.  Mother finally got it. “So you mean I haven’t had the operation? I thought I had the operation.” “No mother”, I gently said “did you see an operating theatre, were you in one? It was just some eye tests and lots of forms.” Mother sighed with relief as her eye was no better and she had thought the ‘surgery’ had failed.

Mother said later when settling for the night “I still don’t know what happened today. I thought I must have dozed off and didn’t remember having the surgery.” “No mother, you didn’t have the surgery” I said. “What were those drops for?” she asked again, “Just to numb you eye for the measurement tests” I said. She then chuckled “and it was just pre-admission” she finished.

Adjusting to Change Stage 1

Life has changed dramatically since Mother came to live. My dreams for this stage of life were to work and make the most of the latter years of my working life, spend time with the extended (now adult) family, develop relationships with my increasing numbers of grand-children and have a life that involved more leisure and time for me (autonomously & free of dependents)! Well, all I can say is that has not happened yet...

All the while Mother and I were on a learning curve. We did not know exactly what we were dealing with or what to expect. This meant that to enable me to support her, I needed to become more informed regarding Mother's condition. Liaising with the Ministry of Health NASC assessor, the Clinical Staff (while Mother was in Respite care), along with relevant websites were very helpful for this.

Routine was the first priority when Mother came to live. Establishing a routine met Mother's basic daily needs and kept her safe. It is important for aiding memory, establishing a sense of being cared for, building security, and lessening confusion.

An Agency supplied care-giver support-worker to assist with showering & dressing, give breakfast, and supervise taking morning medication was the most practical assistance I could get that freed me to go to work or have a break if rostered off. At least I could rest assured that Mother would be up, dressed, fed and ready for her day. This was planned to happen in time for Mother to go to Day-care.

Weekly Doctors visits were required and thankfully I found a Doctor for Mother that had a special interest in Dementia. He was  involved in establishing our local Alzheimer's Day-care. All Mother's medication required careful review. I knew from my nursing experience that the elderly become very sensitive to medication and often as a result do not require the 'normal' doses they were commenced on years earlier. This was the case with Mother. Some of her symptoms were impacted upon by her sensitivity to  medication. Her medication was selectively with-held or decreased, due to her dehydration and low blood-pressure initially and needed to be carefully re-introduced, at reduced doses, as the reasons for needing them were prioritized.

I was through Mother's Doctor, that we were introduced to Alzheimer's Day-care. What a lovely supportive place. Mother and I had explored other interest groups that Mother could go to, but she was very reluctant. Absolutely refusing them to be truthful. I now realize that the people attending these groups often did not have the same struggles or understanding of what a Dementia sufferer had to deal with. The Alzheimer's Day-care, in contrast, made it immediately safe and relaxing for Mother, with no pressure or expectations put on her (to remember names for example). It was a haven to socialize with others, have therapy and feel supported, not alone in their often similar daily fluctuating struggles. Mother loves going and it has become a 'family' to her.

That was the basic plan of adjusting to a life of being responsible for Mother.

Mother came to Live

I hadn't seen Mother for some months as I had been diagnosed with a melanoma on my face and underwent surgery.
It was a scary time, wondering if I might be disfigured, or possibly going to die if not contained in time. My future had a shadow of the unknown over it, I felt. I have three married sons, lovely daughters-in-law and six wonderful grand-children. Would I be around for their 21st',s or weddings I wondered? The grandchildren are still  young, one is eight, the others are all between one and four yrs old. Just the delight of seeing them was great therapy.

During my time off work, post surgery, I thought it was time to visit Mother. She always told me she was fine when I rang. My sister lived in the same area & assured me she was keeping an eye on Mother.  I thought I would give Mother a surprise visit. I did informed my sister that I was coming though.

What I found was shocking. Mother was in her bathroom, naked & disorientated, not knowing where her clothes were. It was obvious she had a urinary infection which had caused her sudden mental deterioration. Mother had also lost a lot of weight, while her fridge and pantry were full of food. I investigated what had lead to this...

Mother, it turned out had early dementia, and was very good at unintentionally covering up. After I had Mother assessed, I then had the sad task of putting her into a respite hospital bed, in a home for the elderly, to give her the twenty-four hour nursing care she needed to get over her infection. It also gave me time to assess how she would recover as Neighbours reported they were worried about Mother being left alone, saying they didn't think she was coping. It appeared my sister was caught up in her own life business, and had been ringing instead of visiting. Mother, it seemed, always put on a bright response, so happy, in the moment, to hear from one of her children.

Mother was assessed as needing Nursing Home care. She was not initiating, forgetful, not eating, had faulty reasoning, had frequent falls and was vulnerable. She also has a medical history of diagnosed severe Aortic Stenosis, HTN, IHD, CHF, Arthritis, Gout and is on Warfarin for Atrial Fibrillation. Mother was dehydrated from her hot Unit and lack of fluids (it was Summer). On top of this, Mother was still taking her antihypertensive medication! Luckily not every day, as I could see missed days in her blister pack, due to her forgetfulness or confusion over what day it was. The Pharmacist assistant confirmed this was not a recent development. She had observed mother disorientated weekly when leaving her blister pack medication and often medication was not taken.

I initiated Power of Attorney over her health & Welfare following the doctor and Home's advice. Mother, fortunately had set it up years ago, for such a time as this. She chose me because I was her eldest daughter and a Registered Nurse. The assessor informed me Mother was no-longer able to cope living alone. Sadly she could have been having support services three times a day to keep her in her unit, but could not be left alone at night now. Mother told the nurse in the Home (in my presence) that what was worse about being confused was that sometimes she woke not even knowing who she was! Sometimes she found herself on the floor not knowing where she was at night. I was shocked and saddened to hear how Mother had been silently suffering, while all the time putting on a bright smile and pretending she was OK. How many others with early dementia struggle this way?

While Mother was in the Home, I sorted out a place for her at my house. I gave her the largest double bedroom so she could have her bedroom furniture on one side, and sitting-room furniture in area by the window, similar to her lounge in her RSA Unit. I hoped this would be familiar and assist Mother to settle in.

I then collected Mother from the Home and had the task of informing Mother and packing up the Unit. Mother was just grateful to be being cared for, relieved from the responsibilities that go with living alone and glad she didn't have to go into a Home. The rest of my siblings (four brothers and sister) were slower coming to terms with Mother needing care. They were not so supportive as they needed time to adjust. It was a very  stressful time.

I knew I needed to get Mother home and settled into a stable routine as soon as possible to prevent further deterioration and maintain her health. She had to be my priority. I couldn't bear to think of putting her into a home. Ideally, I want to be there for Mother for the latter years of her life. So Mother came to stay :)

Introducing Mother

Mother is a sweet unassuming 86yr old and now lives with me. She used to be a nurse herself, worked until retirement, then went to the sea-side to live. She loves the sea, her Father & brothers came from a line of sea-farers. She has famous ancesters, first whalers & great chieftans who met & intermarried when NZ was being discovered. This was before European colonization & westernization. She is of Te Atiawa, English & Irish origins. Some of her Tipuna were famous carvers & their works remain to this day.

Getting back to Mother. . . she grew up by the sea...Island Bay, Wellington in fact. Mother also once owned her own fishing boat, with her companion Bob. They brought the boat up from Wellington to Gisborne years ago, through the worst storm imaginable. Mother said her & Bob were able to find some shelter along the East Coast, but she was so afraid of the huge swell & towering waves that she cryed out to God to save them & has faith that He heard her since.

Mother has fine features, big brown eyes, olive skin that shows her Maori ancestry and a strong will. She is caring and kindly, looking for the good in everyone and does have a tendency to worry. Mother spent her child-hood as her own mother's right-hand cook & care-giver to her three siblings, being the eldest of four. Mother didn't enjoy the chores and child-care responsibilities assigned to her, which had the later effect that caused Mother to avoid her grand-children when young, fearing being caught up in child-care again.


As a teenager, Mother went through WWII. She was the youngest in her battalion, and has many fond memories of her time in the WAACs where Mother made many friends, most have died now. Mother endured the Depression, becoming engaged & married during those years. After Mother's first love & fiancee was killed, Mother said she met and eventually married my father to get away from home. It was against her parent's wishes, but Mother can be stubborn when her mind is made up.

She paid for it though. Six kids later & 25 years of misery, Mother decided to do her nursing training so she could support herself. That was when she met Bob, an old friend of her brother's. Bob gave mother the courage to leave Father, who was obsessive-compulsive & very controlling. Bob was drowned years later in a fishing boat accident.


Mother carried on with her nursing and then care-giving after retiring from nursing at 65yrs old. She remained single even though there were offers of marriage. Mother moved to a RSA retirement village and loved it there. She was very social and hospitable. Mother also remained friends with Father, whom she said felt more like a relative/brother. He had remarried twice and is now no longer alive. Unlike me, Mother is an extrovert & loves being around people. She follows the lives of people she meets with avid interest. Mother lives very much in the present, moving from moment to moment.