An end to the Mother-daughter Journey

Mother had been in Residential care three and a half months when I began to get regular phone calls from the staff regarding Mother. Mother was distressed, saying she couldn't breath! Mother was crying, saying she was dying. Each time I went in and stayed with Mother till she was settled and comfortable again. Sometimes she seemed vague, not very with it, and rambling. She had also taken to singing when she couldn't find words to talk. How clever of her to find a way, I thought.  Staff said Mother sometimes sang all night!  

Mother would rally after about 20 minutes, saying "I don't know where I have been or what I was saying, but I'm back now!" being her usual bright self again.  In retrospect "I'm back now" was a common statement after her mind returned from what I can only describe as 'dementia wanderings/vacancy'. They became more frequent. Often she didn't quiet remember who I was, but knew she knew me. Her long term memory was fine, just in the wrong time zone often! Mother would be so surprised to hear she was 90 and I was her daughter. Once I showed her her pure white hair in the mirror, then she believed me and was so amazed.

The disease is a whole body disease, which I lost sight of until Mother entered her final terminal stage. She had precious lucid moments which became fewer in time each day. Mother slept more, rambled more and regressed to little-girl more. Her great grand-daughters (5 & 7 years old) came and played their ukuleles to her while they sat on the floor by her bed and sang to her. Mother stopped her rambling to listen, then went peacefully to sleep. The girls felt proud they had sang to Great-grandma to comfort her enough to sleep. Other times when she cried out "mummy", I would gently respond "mummy's here" and she would settle.

It was a precious irreplaceable time; just to sit with her and hold her hand, feeling her presence even though she was past communicating. She still was Mother, her presence was part of my experience from birth, and so comforting. We would sing to her and pray with her.   Finally after ten days Mother passed peacefully in her sleep. My youngest brother had spent all afternoon sitting with her and I sat with her all evening, expecting to stay overnight again, when she quietly went. We had been expecting it for so long, it finally was a shock when it actually happened. I remembered when Mother told me she would be dancing when she turned 100, so at her funeral we had the song "we will dance"; a song about dancing in the streets of gold in heaven. It is reassuring that Mother had faith in Jesus as her Saviour. We expect to meet her again, as with faith in Jesus, death has lost its sting and there is hope.  May God Bless you Mother.

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.

"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.