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.