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.