Mission Possible & Mission Impossible?! - Success in one area, sadness in another

It is such a difficult time .. I get in this morning .. to find that my mother had refused her feed overnight .. but that no water had been given – I do not think that the Care Plan had been established for this potential scenario ..

The feed had been started in the new regime of 500 mls during the day & 500mls at night – but my poor mother was in a lot of pain in the stomach & said she felt so thirsty .. gosh – what a desperate situation .. I feel so terrible for her, that she’s having to endure this ..

I settled her and left her to sleep – I hoped – and was grateful that Janice, our Healer, would be visiting in the afternoon and would guide my mother to a calmer more peaceful place ... thank goodness.

I wait to see what the Nursing Management will do .. I don’t have much faith I’m afraid .. perhaps things will be different?

Mission Possible - Blog Readers do you notice the Change?!

As I expect you will have gathered we’ve had a roller coaster ride these last few weeks & I can’t believe what’s happened really .. & if it inspires anyone and opens minds to ideas = well & good.
We were back to mundanity this morning .. the dietician came .. to sort out the nausea, sickness, etc etc .. all challenges with a PEG feed – an intrusive mechanism .. but oh so valuable to my mother and I as she's still here. We’ve agreed that we’ll split the feed into two parts .. so Mum gets some overnight and some during the day .. lets hope it takes some of the nasty symptoms away.

My second visit .. she asked that I re read some of the letters .. and was amazed at the numbers – about 35 .. so I’m so chuffed that she’s so pleased: she said it was the best birthday she could have had – possibly the best ever! Then she just said that I was an amazing daughter and had done way more than she thought possible for her .. and ...

.. she just said she shouldn’t be here .. but we discussed the whys & wherefores .. I said I’d found it a really interesting journey, eye opening in so many ways, the people we’ve met along the way ...extremely emotional too. She said she was so pleased and had thoroughly enjoyed our conversations and how I’d made life fun for her and brought some interest into her situation.

We discussed masses of things .. her death, why she was still here, what to do with Hardwick her ‘TinTin’ terrier type dog, who is an amazing companion for her .. she can talk to him, keep him with her – we laughed at so many things .. and she seemed really happy.

Janice, our Healer, has really helped and a lot of the things stay in Mum’s mind .. and the fact that God will take her at the right time .. this seems to have settled her .. & the fact that the family got together to see her – solves one last puzzle for her. I reiterated again that Janice has said that she’ll be with us during my Mum’s last moments and I have to say that’s a mega relief to both of us: it will now be a lot easier. We can laugh together .. and see how long it is before God calls her: & I will now continue with my Mission Possible!

Mission Impossible - the journey cont ...(2nd post)

... as you might guess .. whatever I did as far as the family were concerned was wrong .. so as a family (only 5 of us) we convened to see my mother in the morning – my brother having decided over the weekend not to see his mother on her last birthday .. had to come down.

We tried to get my mother to talk .. to no avail ... and discussed a couple of minor issues .. not what she wanted to talk about I think ... but we were all twitching & so I just decided they had to go. I stayed and settled my mother ..

Our Healing Touch Therapist had come early to ‘do her magic’ with my Ma .. both spiritually and to make her comfortable. We’d had a long talk the night before & Janice is amazing & just said she’d be there for us both all along the way and at the end. I went back for my usual afternoon visit and my mother seemed content.

Mission Impossible - the journey cont ...

I have had an extremely difficult time .. with my mother saying goodbye to me, leave me in peace, I won’t need that done where I’m going to be next etc & telling me that I should get a life and don’t miss out .. & more particularly don’t let myself be the carer for my uncle, her brother-in-law! So she still knows what’s going on.

It was extremely emotionally traumatic .. as she was refusing her drugs .. and what next? It’s difficult finding oneself in that situation .. as I don’t get any assistance or support from our family. She also reconfirmed the crematorium and then a service in Cornwall with a final resting place in the churchyard. She said she’d wave at me as she went .. & I was to wave as I went past the churchyard every day ... difficult as I live 300 miles away! We laughed .. I have to .. – it takes the sting out, I guess?

I had to find out what was likely to happen, what the possibilities were etc – make decisions .. did I need to tell my brothers .. would she refuse her feed (which starts at 10.00 pm) ... in the event I felt I had to tell them, because if she had refused her feed ... and I had not told them .. it would have been terrible. As it happens .. if I did so .. I’d be wrong, if I didn’t .. I’d be wrong .. sometimes you can never win – but I covered the bases .. & she didn't refuse her feed .. but ..

Mission Impossible - the journey cont ...

She is now exhausted .. but so appreciative of my visits and attention to her needs .. something that only a near and dear can tap into .. & ‘know’ what is required or wanted. We had a peaceful time just being together, holding hands with the odd hug – so important to the elderly .. but so often forgotten.

Her first question, after the initial good mornings, how are you etc .. – my mother is always polite and thoughtful about others .. even in her last chapter, is when is Janice, the Healing Touch Therapist coming next? Janice helps so much spiritually and physically with some very soft gentle massage on stiff or hurting points.

Linda, a friend, whose father was with us at Kestrel House, and who works with the disabled and who spent time with Janice looking at the Healing Touch Therapy – tried it on one of her clients - & the father said he’d never known his daughter be so relaxed and at peace: it is an amazing treatment.

Mission Impossible - 88th Birthday

We have had a lovely birthday – my mother has been so pleased with all the cards, photographs and letters from friends and family. She had a lovely morning with a Healing Touch treatment, and some prayers and a blessing by the vicar; my brother and sister-in-law & their standard poodle dog visited.

We’d had an excellent afternoon opening the cards and I was able to read them to Mum and interact with her .. and we had lots of laughs and lots of happy memories: she said she was amazed so many people remembered and said she’d had a lovely day.

I’d been in the right place at the right time - purely fortuituous - and had found some anemones and some narcissi – desperately early as they are spring flowers .. but my mother is so pleased to have them – they’re her favourite flowers. The anemones – the jewels of Cornwall and the narcissi – so fragrant.

Mission Impossible - the journey cont ...

The past 5 days has been a roller coaster of meetings, letters, phone calls etc with various clergy, the Nursing Centre and the Hospice on the gritty subject of my mother thinking about converting to Catholicism .. in her mind it has all faded .. and she’s happy with her Church of England faith, which has been a cornerstone of her life.

At least I opened the door for her and we’ve explored it and will continue to mull through religious matters as and when she wishes. Our Healing Touch Therapist, I know, will continue to provide my mother with an inordinate amount of relief – spiritually, mentally and physically and we now we have the support of the St Wilfrid’s Hospice http://www.st-wilfrids.co.uk/ for our predicament, their Chaplain has been up to see my mother.

My understanding is that the Hospice will ‘research’ our case and my mother and I will be under their auspices and ‘on their books’ for the remainder of my mother’s time on earth - & they offer a support service for me, should I need it in due course.

Mission Impossible - the journey of hope (1) (the beginning)

Well – what a difference a day makes?! Our Healing Touch Therapist (daughter/sister!), Janice, has obviously been doing a fantastic job with my mother .. calming her tortured soul and helping her realise that God is where ever she wants him to be. So my mother has (finally I hope) decided she does not want to convert to Catholicism ... I guess it was her way of saying I need a change ....

The Palliative Care doctor came from the Hospice & I understand that the terminology has been amended to be for Limited Life, as my mother is in a Nursing centre for the terminally ill: &is now not just for cancer patients, as it was earlier in the year.

We discussed the situation & Jill, the doctor, took the holistic approach looking at all angles and made instant decisions ... why on earth the Health Authority can’t do this & save a lot of energy time, stress, anxiety etc for the family, the carers & the Hospice, let alone their charge - the terminally ill patient suffering more than is absolutely necessary ... I do not know – do you?

The Hospice doctor was absolutely brilliant with me, and also with my mother & I hope when I go and see my mother today – we’ll both being seeing things in a different light.

Spiritual Needs - Reason to change? Her thought Processes

Well once again .. my mother has thrown me a wobbly .. you’d think with three major strokes, she couldn’t string it all together (& obviously she can’t properly) .. but all the right connections come out as far as she is concerned regarding this desire to convert to Catholicism.

Yesterday she said that the reason she wants to convert .. is that it will give her a change of direction*!! Get her out of Kestrel House and on her way home. We laugh about how she’s going to walk along Penzance high street with the various tubes etc .. I have to laugh & brings a laugh to Mum too! She is convinced she’s ‘fine’ & getting better .. well positiveness is better than wallowing in self-pity = something I’m not sure I could cope with.

So - she has one of her bees in her bonnet & those are extremely difficult to shift ... been there, done that!! She is intractable .. so I have a few challenges ahead I’m so pleased the palliative care doctors reinstated their cancelled meeting with us .. so it’s today: I sincerely hope it helps me!! * I’m not sure that’s a good enough reason to change religions – what do you think?

Her thought processes & spiritual needs ...

Hurray .. Mum is back to her normal self ... it is good news! Janice, during her Healing Touch Therapy session said she was very chatty! Janice is brilliant & I would highly recommend everyone considering alternative ideas for those in need – Mum becomes at peace with the world, when she visits .. especially from the reassuring and wise words she offers my mother.

I, too, had a very good visit ... lots of laughs, lots of interest in new letters and cards from family & friends, and also discussion about the older ones: that are all over the walls – stimulating her and keeping her amused and interested.

I’ve mentioned to Mum that I’m starting to read and listen about the art of meditating .. & she remembers and is interested .. so I must carry on and learn more about the principles and practises, so I can update her: she’s always so interested in things. It is inspiring and sets standards that we could all follow – be interested in others ... there’s too much self interest in this world?

Her Interests & needs: Remember those..whatever they may be ... including care!

She was still very tired .. but I had two good visits .. and we discussed and mulled the religious aspects .. and she agreed that God is wherever Mum wants him to be .. and that perhaps it was best to leave it that way .. as she’d been absolutely exhausted by it all: she agreed & said ‘we could sweep the idea under the carpet’!!
Fortunately she was happier in her self and I told her I’d cancelled my week’s break and so would be around for her .. she was extremely grateful & again hugely relieved. She knows I’m extremely tired and is really concerned for me .. as a mother would be, but reassured that I’m ok .. & coping.
I must now follow the RC thing through, with the change of heart .. and update the clergy as well as my family. However .. I’ve instigated a meeting with the palliative care doctors as they said they’d come back & talk to Mum, and haven’t – because they’re cancer & pain palliative care specialists (& we don’t fall into that category) – but I feel after a year in Eastbourne, we need some guidance – as surely ‘brain agitation’ counts as pain?

Brain Process & Spiritual interests ...

The thought process of wanting to convert to a Catholic has completely exhausted her .. & she’s so tired and brain weary .. Janice’s Healing Touch massage and calmness relaxes Mum and she is able to drift off into a wonderful sleep.

However unfortunately her brain is working overtime ... so sad ... and really for the first time ever – she’s said she’s so frustrated at not being able to get back to Penzance. She was saying that if she gets to Penzance with all her tubes .. I needn’t own her as she goes into town?? We had a good laugh about it .. & the shock to other shoppers etc!! What else can you do??

Yesterday, I told Mum that I was starting to study Meditation .. & she asked me how it was going! So you see her brain is all there! All this adds to my brain load .. & I need to work out the best way forward for her, which encompasses other areas of life & I need to draw on as many personal development skills as I can.

Her Spiritual Interests .. Religion (cont 2)

I’ve contacted the relevant parties to start the ball rolling .. without going overboard .. & to test the waters. Janice will continue her approach – it’s wonderful to have such a great centred, calm person helping us through this ‘challenge’. Janice is definitely more qualified to help me with direction in this regard.

I bumped in to Barbara, the Catholic volunteer in the supermarket! – as you do when telepathy comes to the fore (quite often recently for me, in various things) .. so when she rang me we had a good discussion. I established that the conversion process is not quick. Father Jamie had said he’d go back and have another meeting with my Ma.

However .. this is my mother! .. when I had a chat with her about it .. & was telling her that I was establishing ideas etc on her behalf, and said we’d let her have time to work it through .. Mum then announces that she hasn’t made her mind up yet!! & to top it off – there’s no hurry??!! Brilliant – I just laugh and we laugh together .. as to me it’s all too funny. What an incredible journey!

Her Spiritual Interests .. Religion ..

Well .. that was a surprise .. and a shell shock to us all .. Father Jamie must have been very surprised .. I’m afraid I had a fit of the giggles when I talked to FJ & to Janice (what else do you do?!) – my mother is full of surprises and completely unseated all of us!

Mum is direct to say the least and announced to Father Jamie that she wanted to convert to Catholicism!! Poor chap .. his first reply obviously: well I’m not the right person here and said he’d send Father Seamus to see her. Not at all what we had assumed – a lesson: never assume anything?! ....that the discussion would follow the sort of things normally occurring when someone is in their last months?!

However – things settled down after that .. & they had lots of philosophical discussion regarding the C of E church and its direction – bless Father Jamie for adjusting so quickly to the situation; he stayed an hour & it’s completely exhausted my mother! – let alone FJ & me!!

Janice, our Healing Touch Therapist, was wonderful in talking Mum through her discussion with Father Jamie and help her mull through some of the religious ideas arising. Mum’s brain was clearly agitated at the amount of energy she’d had to put into this process .. Janice managed to calm her and bring a centering back to her being.

When I got up .. and chatted to Mum about it all .. I said Father Jamie must have been very surprised by her request .. and started laughing .. she giggled too .. – so I said I’d put the wheels in motion, so she could think about it a bit longer and I’d talk to FJ, to Janice & to a Catholic volunteer, who visits us .. aged 92?!

Her Interests & Needs - spiritual

Yesterday .. I’d made arrangements for my mother to have a peaceful morning .. in time for the vicar in the afternoon. She was grateful that the time had come, though knew that I’d organised the day to go smoothly for her .. so that she’d be physically ready, and have time to prepare. So when I arrived she smiled benevolently and said she knew .. and that, after a hug, I should go so she could gather her thoughts!!

The vicar arrived safely .. and today I will find out – how things went. Janice, who is a Healing Touch Therapist, is visiting my mother this morning and will be able to spend time with her; Janice has been amazing .. we have been so lucky in finding her - & the three of us treat each other as another daughter, sister, mother .. it’s fantastic to establish that kind of relationship with someone who offers both my mother and I so much sanctuary.

Today is Older Persons Day ...?!

One of our recurring themes .. is that whenever I sit down with Mum .. inevitably my body ‘collapses’ .. & I start yawning .. & she’ll count!! Then we both laugh .. I can’t explain to Mum, as she can’t take it in .... she just says at your age she wasn’t that tired .. then one day .. out came the words you’re a “pathetic pensioner!”

So now .. this pathetic pensioner has to combat her comparisons to what she was doing at my tender Older Persons age of 60! When she was converting a hotel to a Care Home and preparing to double the size by extending it ... oh well such is an interesting life! I think I’ll have another yawn!! – no .. there’s so much to do – it’s an exciting life ahead .. but for now my mother is number one, until she decides it is time.

Remember to say thank you with a smile ...

Today is not so good .. it’s a developing symptom with strokes .. – but she knew I was with her and had a hard squeeze of my hand, and was thanking me for being there & for letting her rest, knowing that I’d return this afternoon; & also just gently reminding her that the vicar is coming tomorrow for a private appointment that she made with him, when he said prayers with her last time.

A couple of the other things that have set my mother apart with all who have met her since she’s been ill .. is that at all times .. she says thank you, and is so grateful for all that is done for her = it’s a constant: she doesn’t forget the power of a thank you: & a sunshine smile!

Remember to say thank you with a smile = it’ll take you a million miles.

Her Interests & needs: Remember those..whatever they may be ...

My mother has been really amazing .. you’re going to hear this often .. – when she was really ill & hooked up right at the beginning (May 07) she was saying don’t give me choices .. one or two are enough; fortunately I seemed to be able to slot into the mode of asking which she’d prefer to do or have ...

It’s terribly important to have eye contact, to talk clearly, slowly and succinctly .. not saying a lot in other words, but conveying what you want to say & making sure that she understands ... bringing memories (again brief) to guide her & allow her brain to take in what you’re saying: then you’ll get the response you expect (probably!). Time is critical in communication skills .. my mother says to me .. let it sink in – don’t know yet .. the words take time to be unscrambled and to be assessed, and then to be thought about & then perhaps to reply ..

.... however if you want sharp wit .. just come & visit my mother .. it comes straight out!! More often than I expect sometimes. It is mind boggling .. how the brain works .. then we have a good old laugh .. she belly laughs often –which is so excellent.

Curious About Life?

Something missing . . . ?
friends . . . . fun . . . games . . . . health . . . . help . . . . hugs . . . .
humour . . . . inspiration . . . . inspire . . . . laughter. . . . Flowers . .
love . . . marriage . . . travel . . . . freedom . . . .life
On the journey of becoming someone?

http://www.brightcove.tv/title.jsp?title=716119040


Enjoy ...!

Why am I doing this .. cont

Understanding the capabilities of my mother and adjusting to those each day and being aware of those things a stroked patient can tolerate ... I wonder if carers – both professional and personal – know what these are?

My mother cannot take too much noise at any time; nor does she like tv – perhaps that’s indicative of our upbringing .. it simply wasn’t on much; the radio is a definite no no = she can only absorb small amounts of information at any one time.

My next post will highlight how she can stay engaged and not switch off – ie the approaches that best serve her interests ... something that most of us will need at some stage in our life: mine came late ... but I believe will help me with other aspects of my life.

Why am I doing this ...? cont

I don’t know if the same thing happens in other countries as happens here? – ie the nursing is done almost without consultation with us – which I find really difficult to deal with .. again isn’t it common sense that my mother’s nearest & dearest should be consulted at the same time? To me it’s politeness .. as surely I know my mother the best & therefore will be the person to help her through those changes?

Also here different National Health Trusts offer different products .. so my mother, having survived the trauma of the strokes, then has to adapt to a different feed product on transfer to Sussex. &&& .. I won’t go on .. negatives don’t help! But it’s good to get it off my chest ..

It’s a year today, 28th September, that my mother was brought down from London to Eastbourne .. so I can celebrate her year of life with us down here .. & the enjoyment she’s brought me.

Why am I doing this ...? cont

Understanding comes in various forms .. understanding the condition, especially at the beginning – when you don’t know the journey to get to the final outcome ... if I’d known how we’d be today, I’d probably have been happier last year! It’d have been easier to comprehend.

Understanding the possibilities – rather understanding that you’re not going to find those out ... it’s like guess work .. it drives me nutty!! I ask and ask .. & really don’t get much help or suggestions .. all I wanted to know .. was how was it going to develop – because then I can be prepared & be one step ahead – it’s hard work & emotionally draining working all this out.

This withholding of information, in case of incrimination .. really does not help those that genuinely want to know .. for an extremely valid reason: to facilitate my mother’s life (and perhaps more importantly my own) during her last months.

Why am I doing this ...?

To help myself record some of the interesting interludes that we’ve had along the way .. yes it has been traumatic, but I’ve seen my mother’s character blossom with many an amusing tale to tell .. she laughs a lot and we have had some interesting discussions on various topics.

The trick, I’ve found is to be ahead of the game .. ie be thinking in advance of topics that she would be interested in ..they have to be snippets, as she cannot concentrate for too long .. so when you see something amusing or stimulating .. make a note, cut it out – then the next trick is to remember what it was of interest that you wanted to discuss ... !! My own brain gets tired too .. I’m not used of thinking for two .....

The learning curve ..

My mother has always been aware of others .. and we discuss their needs, their challenges and she’s always reminding me to keep our standards up .. to do what is right, to give the right expectations ..

It is uplifting and has made me think that I should reassess my life, be considerate to others, learn to be grateful at all times and for all things – a great many readjustments ... gratitude journals, gentle wisdom ...

The positives of life ...

So I’d like this blog to contain the positives of life .. – yes we have to deal with the negatives, but why brood on them? bring out the light .. be flexible, learn to work round the challenges – so difficult in these situations .. especially when one needs support – the emotional and the practical ... not always forthcoming.

I’d like to tell short stories, bring out the memories, remind ourselves of our shortcomings and how we can overcome them, offer positive ideas, positive thoughts, topics to amuse or interest ..
Let me know what you think ...

Her will to live ...

She has always been positive in her outlook since her strokes (though oddly she had a period of insecurity and depression, despite owning a successful business – a Care Home - until she was 80+, in her last few years before her strokes: this was always something I found difficult to understand).

Everyone in the wards thinks my mother is wonderful – it is so heart warming .. she’s always thankful for everything that is done for her & always wanted to cheer others, particularly those in a worse situation to her .. they were younger, with a future, or with younger families = it makes you think!!

Balancing Life ...

My mother after the initial realisation in her mind that her life had changed dramatically, as she had had two of her major strokes on transferral to ABIU, seemed to relax into her situation, though never did she lose the will to live or to continue to do things and still hasn’t – 19 months later. (just a note.. she has had an adominal tube feeding mechanism in since June 07 & has had nothing to eat for a year, and since Christmas 07 has had nil by mouth either .... - another dimension to her care & her strength of mind)

We’ve had to adjust to her situation and as a daughter I’ve worked my way mentally through the challenges of brain injury, the personal emotions, the family challenges, and maintain a positive outlook as our impossible journey continues ...

Mission Impossible - in Personal Development

We had such wonderful people with us in the Acute Brain Injury Unit – the doctors, the nurses, and in particular the other patients, together with their families, in our small ward of 5 usually, (one bed was kept free for emergencies & there were some) – we were a global mix.

So much to learn and to educate myself about .. strokes, brain injuries, other cultures, different languages – mission impossible to do it all .. but an experience in personal development if ever there was one ...

Power of a Mission ..

The realisation that life balances have changed and the mother daughter relationship is still there, but it’s also turned on its head .. I have to be as much of a mother as I can to my mother in her hour of need: this leads to personal changes, career adjustments, and suddenly realising that there are now two of us ... in my one life – a few major adjustments will have to occur over time!

When a major disaster affects each of us at different times - how do we react? How have you adapted, what have you experienced? – I’d love to hear.

Life Balance gets kicked out ..

I had to adjust to travelling up to London to see her three or four times a week, though occasionally more & then after 8 ½ months finally down here, when I visit twice a day, unless my London brother & his wife come down.

We have much to be grateful for: Mum is looked after and we don’t have the terribly sad time that others have with their elderly or really ill family members – when the enormous difficulties of home nursing and care come into play, with its emotional stress and physical strains taking their toll. I had plenty of that too, but in the main I consider myself lucky .. the incredible journey continues ...

An Impossible Journey ..?

The shock and realisation that suddenly my mother’s life is at an end .. but is it? The care and concern of all .. the move to the Acute Brain Injury Unit (ABIU) .. the medication to bring the strokes under control – all carried on while we as children adjusted to the situation at hand.

Then the "shock horror" that my mother would live on & we really would need to adjust to a different life .. for how long? None of us knew & no-one can predict: It is her life and her decision - something I was told early on.

Then we started looking at her character ... the strength, her tenacity and resilience .. her faith & her belief that she most certainly did not want to die .. she still had plenty to do ..

Mission Impossible? - your views ...

I have learnt so much over the 19+ months since my mother first went in to University College Hospital London (UCLH), and as this blog develops I will start to bring out categories relative to your thoughts that you pass on to me .. the emotional elements, the positives, the ways to adapt, uplifting ideas, and lots lots more.

Is this a Mission Impossible? I don’t think so .. my main aim is to BeHappy .. so that this Mother Daughter Balance of Life Blog can bring hope and comfort to all, who have to go through similar difficulties. What do you think? Please let me have your views – I’d be very grateful.

Mission Impossible? Daughter's Life Skill Change ..

My mother had three major strokes 19+ months ago, but miraculously, is able to communicate – despite being bedridden.. how can a daughter adapt her life, while at the same time maintaining a balance of life, when she too is reaching her pension years? What are the life skills required? What can we learn from this situation?

I’d like to get a dialogue going with all of you who’ve been kind enough to read this site Mother Daughter Balance of Life Blog - & I’d love to have all mothers, daughters, grandmothers to record their ideas on the life balances we must all make. I’m sure comments will be forthcoming too from men with a desire to learn, professionals, healers and carers – I look forward to all of these!