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KEEPING THE LID ON – 2 Sunday July 17, 2016

I wrote a blog with this title in March 2015. Over a year later, coping with a deteriorating situation, I'm still here – due very much to what I now term a 'watching' committee. They are the professionals, doctors, morning nurses. They are family, friends (so generous with e-mails) and the Moodscope 'world'.

'Opening up' in the morning, reading the day's blog and late comments from the day before, start my day. After three hours' solid abuse from 5am to 8 am and being called a terrible wife I've had a brainwave – I will get up and call my friends in Australia.

Over those 15 months I've lived with you all coping with depression of every severity – going through counselling, trying all sorts of drugs, weeping on shoulders, on cats; struggling with the work situation; struggling even to get up in the morning; risking alienating friends and family. But, with depression, a huge percentage (luckily), come out the other end. With Alzheimer's, you don't.

We've plumbed the absolute depths – and recoiled. Ironically I am glad that I worked 5 years with Samaritans, with Crisis at Christmas; that I have the experience of a daughter-in-law who spent 5 years working with Alzheimer's. If you've seen an 18-year-old girl 3 days from death from heroin addiction, the wrecks that alcoholism has driven to live under Hungerford Bridge, I think, I hope, spirit willing, that lessons can be learned. Now I am being advised that my own health is in danger; it's time to call it a day, which equals a home for my husband. But – I cannot yet.

As he cannot manage phones or radios he would very quickly become institutionalised; good though our hospital and staff are. I hunt congenial radio programmes, English and French, on line. Friends and family can phone anytime. People go by in the road, pop in. Despite spending most of his time wrapped up in a cocoon of coats, blankets and misery I can still provide him a life.

With a little help from my friends.

The Gardener
A Moodscope member.

Thoughts on the above? Please feel free to post a comment below.

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the room above the garage Sun, Jul 17th 2016 @ 12:45am

Hello darling girl, we are lucky to have you. And so is Mr TG. I enjoy hearing your life in words on my page. Consider yourself wrapped in a long hug from me. I expect you don't have that very often and it's more than your turn. Sending love to you from me, love ratg X.

Hopeful One Sun, Jul 17th 2016 @ 6:41am

Hi TG- thank you for sharing your journey with us in a bus called Alzheimers. As you probably know I am also a fellow passenger. The decision to commit one's nearest and dearest to a home is a heart searching and heart breaking one . It is ,however , inevitable given the nature of the condition. Just ask yourself this : have I given it my best try? If the answer is 'Yes' do not hesitate to take this step. It will be painful no doubt but believe me you will come out better in every way.

Your quote says do things with a smile- be a Samaritan to yourself. Here is something to get that smile going.

One day the family overslept and their six-year-old daughter missed her school bus. The father, though late for work himself,decided to drive her to school Since he did not know the way, he asked his daughter to direct him. They drove for a while before she told him to turn the first time. They did several more turns and t his went on for 20 minutes and they finally reached the school. The Dad realised it Was only a short distance from their home. The father rather annoyed, asked his daughter why she'd led him around in such a circle. The child explained, "That's the way the school bus goes, Daddy. It's the only way I know."

Sue Sun, Jul 17th 2016 @ 6:57am

Good Morning TG, Oh how my heart goes out to you...I too spent months looking for care options for my Mum in her last month's of life...although never diagnosed with dementia (there was no point having an additional label to add to the cancer and 101 other conditions?). Mum wanted to end her days with her little dog at home

Sue Sun, Jul 17th 2016 @ 7:09am

...oops! Too early in the day for technology .. I was making myself worse trying to be her nurse, taxi, cleaner, shopper..etc..etc. What gave me the strength to cheerfully love Mum into a gentle farewell was friends and family. This quote too ...Be determined and confident! Don't be afraid or discouraged for I am with you wherever you go. She passed away peacefully a few months ago and I have felt a spiritual support which stops me getting overwhelmed. consider what is best for you and trust doors will open. I don't often reply to blogs but this touched me as I understand. Take care. Sue

Sue Sun, Jul 17th 2016 @ 7:09am

...oops! Too early in the day for technology .. I was making myself worse trying to be her nurse, taxi, cleaner, shopper..etc..etc. What gave me the strength to cheerfully love Mum into a gentle farewell was friends and family. This quote too ...Be determined and confident! Don't be afraid or discouraged for I am with you wherever you go. She passed away peacefully a few months ago and I have felt a spiritual support which stops me getting overwhelmed. consider what is best for you and trust doors will open. I don't often reply to blogs but this touched me as I understand. Take care. Sue

Belinda Sun, Jul 17th 2016 @ 8:27am

Dear Gardener,
I have read your blogs with interest. I feel so sad for your situation. My Mum had dementia, but fortunately we were able to have carers to take much of the load, & enable her to stay in her home. It must be different though, having a spouse, rather than a parent. It has probably been a shared life & a shared house.

I just want to encourage you that there will be a way;

I guess the decision having to branch out alone, and change the status quo is a very hard, unpleasant & an unwelcome one. May I gently enquire if it is meant to be a parting of the ways, or maybe just some other minor adjustment, to enable the continued care at home, but a bit less caring for your husband, on your part, & a bit more input for yourself?

Or, I wonder if things will just get harder & harder? Virtually forcing a more major decision upon you, even though it isn't what you want.

I went through this when I was presented with the need for a hospital bed for Mum & I didn't want her to loose her double bed.
Initially we used a slide sheet to move her, & one of the two carers would kneel on the bed; not so good for the carer's back, but I was satisfied.
Certainly a much smaller situation, but it represented a downward change. Then the situation got harder, which I was able to manage, but I was strong, & the carers were having to do more & it was unrealistic for their health.
In retrospect, the hospital bed was needed earlier, but I was emotionally reluctant to agree. The advising nurse was very gentle with me but it was so painful, & I was very resistant.
It was me not wanting to face Mum's decline. I chose to work harder & all it did was reduce my strength, thus having fewer reserves. Taking me lower in mood.

Dear gardener, I pray you will be enabled to be shown the best way. It will likely be the best for you both, just a change in thinking, & acceptance.

With much love, Belinda x

Jul Sun, Jul 17th 2016 @ 8:38am

Hello Gardener. Does Mr G ever apologise for his behaviour? Three hours of abuse is unbearable for you. I guess he is totally unaware of the effect his words have on you or that he is being unreasonable. That is the nature of the illness? Does he ever say anything nice to you? I have had no experience of Alzheimers and only know what I have read about it.Before Mr G fell ill with this terrible disease, do you think he would look upon what he says to you now as inexcusable? I am assuming that he is now so far gone into his Alzheimers world that he exists unaware of what he is saying. I thought people with severe Alzheimers didn't recognise their loved ones and retreated into a world which had lost all memory of the past. But that they were not necessarily verbally abusive in their attacks on their wives/husbands. It must take on different forms. I am wondering if he has always been difficult pre Alzheimers. As I say I am pretty ignorant of the disease. All I can say is that you are very brave and loving but you must call it a day soon. Hopeful One says it was so hard the decision to put his wife into a home but it was the right decision. Love and hugs Jul xxx

Orangeblossom Sun, Jul 17th 2016 @ 8:55am

Thinking of you as you reach this cross road in your life. Please be gentle with yourself & try not to give into your critical self or Frau should. Both are hard task masters. A big hug!

The Gardener Sun, Jul 17th 2016 @ 9:11am

Oh my fur and whiskers! (Eccentric Professor Fen in Edmund Crispin detective novels) how on earth do I reply to all the love and wisdom coming through? Hopeful one, you've 'been through the mill' and I respect and admire your most practical advice. I AM approaching the ultimate decision objectively and as unemotionally as possible. Two major obstacles - first, mundane, money, all in an unsaleable house - second, humanity. RATG, I do not lack love - if I put my face out of the door nearly everybody who knows me, even near strangers who have only visited the garden or heard me read in church arrive with hugs, kisses, just a pat on the shoulder from a near stranger - and, always 'bon courage'. This morning has underlined that my decision is, at the moment, the right one. Weather brilliant. Flowers everywhere - my terrace (cat currently in sun up there) my two gardens - church square, town square. Bakers shop brilliant - young assistant beautifully done hair, lovely silver/grey eyes. Lovely service from St Martin in the Fields for Nice, French ambassador present, on Radio 4. And Jul, Mr G, pre Alzheimer and eye problems DID have a very pessimistic side, was highly critical of others - directors of company he worked for, his children, me (his brother and mother were also highly critical of me). BUT, we had such a full and interesting life that these things were 'foibles' of character (we all have them, its called being human) but they are now the only feelings he has. Kindness gets one nowhere - Mr G COULD (less now) be contrite when he had reduced me to a quivering wreck at the verbal abuse and swearing - but despite his avowal to hate rows he never remembers them - so cannot do better. And to Belinda - I am aware of my own weaknesses - and that keeping well and positive are vital to our life. Mr G presumes I am superhuman, and often treats me like a dog or slave (2 years ago the head of the hospital where Mr G goes for respite said this would happen) - she assessed Mr G's inherent character very quickly - but I would not believe her. Would any of you who have been down this thorny path have believed such words?

Eva Sun, Jul 17th 2016 @ 9:35am

Hi Gardner, I feel so upset for you. A few thoughts...

You mention other people's hardships which you witnessed during your work with the Samaritans and Crisis. Are you comparing your pain with theirs, and in doing so diminishing what you are going through? I only say this because I used this as a technique to get through my father's death, and although it is helpful to have perspective, I am not the only person, in that moment even, who lost a loved one, what it also did was push the pain aside to a degree and as a result it has come through physically and I am now quite ill. You have to take care of yourself first and foremost, I have learned that pain like water finds its own way if you block it.

If Mr TG were to go into a home, would it be close by, could you pop in and out? Could you organise play lists, we did this for my dad via a tablet, and also through cds, he could ask the nurses to put them on or off as we had them all queued up, they didn't have to bother with selection. My dad listened to a lot of Sci fi audio books which he enjoyed reading initially as a young man. I think podcasts might also be an option as you could download them and then just set them going and as such have constant radio that included programmes of interest, rather than just leaving a radio on which might not be suitable. Again carers could just swith on or off. Maybe you could ask friends to phone or Skype during your visits and make an event of the visit?

I think what I am trying to say is look at the obstacles you are putting in place and understand that there may be acceptable ways around these that can be incorporated in to a new schedule.

I hope these suggestions help, during a recent first aiders course we had it drummed into us that we are the most important person in our lives, you have to take care of yourself and protect yourself first and then give aid.

Jul Sun, Jul 17th 2016 @ 9:44am

I too like Eva, feel upset for you Gardener. Glad you have support in France. Our French neighbour whose mother had a stroke and is currently living with her was telling me that the children (who are the grandchildren of the mother) are obliged to contribute to the costs of a care home for my neighbour Veronique's mother and for this reason she feels obliged to keep her mother living with her so that her three children are spared any costs. But having her mother live with her with daily carers and the disruption it causes to their every day life is taking its toll on them especially Veronique. Jul xx

The Gardener Sun, Jul 17th 2016 @ 9:48am

Thanks Eva - plenty of people would sort the technology, realise not really an impediment to going into a home, money is. Mr G grumbles that I'm never near him - working upstairs, prepared lovely terrace in great comfort, suggests he goes up - how (on you stair lift) their might be sun in his eyes (I've thought of that). I have the words of 'There's a hole in my bucket, dear LIsa, dear Lisa' printed in my diary - Mr G does this all the time - and it's NOT funny!

The Gardener Sun, Jul 17th 2016 @ 9:51am

To Jul, again - we have super back-up BUT like your friend, if I don't keep well and able the authorities would go straight to the family, and none of them are in a position to help, with time or money. After all, WE made the decision to b****r off to France!

Antonella Sun, Jul 17th 2016 @ 10:24am

In Italy we have a proverb: “tra moglie e marito non mettere il dito”. The literal translation into english is “between husband and wife, do not put a finger”, but I searched the internet if a similar proverb is present in english, and the english translation for “tra moglie e marito non mettere il dito” appears to be “Don't go between the tree and the bark”.
What a coincidence, that your post made me think of that proverb, and that an expression of popular wisdom that in italian is referred to marriage, in english seems to refer to some gardener’s wisdom...

You have support from your “watching committee”, you have your experience, the professional help, you do not complain, you feel you have no right to complain, as you receive all the support one adult wise and strong person could desire, even the kindness of strangers. And still, you feel depressed, tired, you feel it is hard. And it is hard. It’s hard to hear the abuse, even if the abuse is a symptom, or a consequence, of Alzheimer. Even if you have been warned two years in advance, that this would happen. Living it is painful, and emotionally draining. There will be a time when making all this effort will not be worth it any more. And nobody can tell you when is the right time to move to the next step. You need to trust yourself. It is your marriage, your husband, and your life. A particularly difficult moment of your marriage. I would be full of rage, if this was happening to me, if my husband had Alzheimer.
Well, all I wanted to say is, I have read your post. A big hug from a stranger.

Lou Sun, Jul 17th 2016 @ 10:42am

Dear TG, Thank you for your blogs and just to let you know you are not alone. Sending hugs, thoughts and an ear is always here, if needed.
Lou & P (the cat)

The Gardener Sun, Jul 17th 2016 @ 11:52am

An extraordinary morning, all these replies. Just finished Bill Bryson's latest book - a revisit of UK after 20 years, loves the countryside even more, but biting criticism of what has gone 'downhill'. Book published in 2015, he cites David Cameron's promise to 'reduce' immigration. Taken to its logical conclusion, out go neuro-surgeons, scientists and 'spongers', all to be counted as a 'gain' in the effort to rid this Sceptered Isle of 'foreigners'. Going to start Miles Kinston's 'How will I tell the dog', letters written during his battle with terminal cancer. This is what I inflict on you, blow by blow account of dealing with another malady. I seldom look at horoscopes - but you above could have written the Madame Figaro on for Cancer, my sign. 'Be selfish, enjoy the rest of summer'. And, on the 18th, Neptune is going to 'widen my horizons' on the 18th. In fact, watch this space, probably up the town to Lidl.

Leah Sun, Jul 17th 2016 @ 12:01pm

What a moving and honest blog. I am always moved by ypur wisdom and patience and your treasury of anecdotes. Hugs Leah

Chris Sun, Jul 17th 2016 @ 1:33pm

I have been using the moodscope scoring and reading the blog posts for a few months. I have not ventured into these threads despite finding the posts helpful at times. Today is a first. Your situation touched me. I am sure that is simply as it should be for anyone reading, and I have a slightly different caring situation with my mother which increases my understanding and empathy. So...there are kind and hopefully helpful words in abundance above and I have no further wisdom to share. I just felt compelled to offer my resonance and presence in the hope that in mine and that of others you experience our love and support.

Jul Sun, Jul 17th 2016 @ 5:10pm

Hi Chris. Lovely to see your first(of many maybe)comment. Caring for ones parents brings on a different set of problems; I have been there.I think if we love our mothers and they have always loved us as children, then although the caring in later life can be frustrating and very time consuming for offspring, it's worth it in the long run. When relationships are not so good, then that's not the case. Julxx

The Gardener Sun, Jul 17th 2016 @ 5:34pm

Antonella - welcome to 'Moodscope' think it's your first? When I went to get the bread, across the square, with all the flowers and in the sun I just felt 'Che bella giornata'. I learned Italian before French, and absolutely adore Italy. Thanks for your so thoughtful reply - as you say, my life, my marriage my husband. I've never raged against Alzheimer - despair - even horror - watching the deterioration of the mind while the physical person remains in good health. What does make me rage (which is, really, the illness) is the self pity. Problems, minor or grave, are to be attacked - with brain, energy and money if you've got them - and your saying about the tree and the bark is a good one - the self-pity is destroying all companionship - if you sympathise it just gets worse, if you shout to shut up and put up with it you get sworn at. Utterly destructive - really clinging to vestiges of humanity and the christian spirit. I think your saying might translate 'Interfere between husband and wife at your peril'. Bouna sera.

Antonella Mon, Jul 18th 2016 @ 9:52am

Thanks for welcoming me! I have been using moodscope since the beginning of may, but this was the first time for me to post a comment. In these 3 months I have only read the blogs a couple of times, maybe I was kind of scared to learn of other people's problems and then yesterday morning I read your blog and I decided to reply. It is nice to hear that the sun was shining when you went to buy bread. Una bella giornata is made of these little moments of joy, the colours of the flowers, the sun…the bread… Also here it was sunny yesterday, with beautiful little white clouds in the blue sky. I lived in Britain for a few years, several years ago, as part of my training as a scientist. I expected a rainy country, but I found that almost every day there were many hours of sunshine. I also learned about the positive aspects of rain. The green grass. The juicy and sweet carrots. I hypothesized that women had a beautiful skin because of the moisturizing effect of the rain. You blog touched me because you seem to be a strong person, you have energy, you believe problems need to be attacked. I use moodscope because... I am not happy of my mood. No serious mood problem, no serious problem in my life whatsoever, but, on a bad day, a lot of self-pity. And we all know that self-pity is bad. So I am always looking for sources of energy, that can help me be strong, and act, and attack and solve problems. Truth is, on some days, when I am tired, sad, probably crying a little is the right thing for me to do. Moments of sadness happen. This cannot be solved once and forever. And sometimes you just wait, and then there will be some sunshine after the rain. I have children, I try to be a good mum. I am at work, most of the day, but I prepare the dinner for my family, and then after dinner I spend time with my two children, listen to them, play with them, help them relax when it is time to go to bed. But on some evenings, maybe I am a little bit more tired, or the children are, and so, when it is time to part after the goodnight kiss, one or the other child starts to ask for more. Can I have a glass of water? Could you massage my back? Can we watch another music video on Youtube? Please please please! So on some evenings the perfect evening ends with me, the perfect mum, shouting "Enough! I am tired! I want to go to sleep!" And once, it happened that, after I had told them that I was tired and I wanted to go to sleep myself, my son "caught" me eating ice cream and watching tv, on the sofa with his dad. "Oh, so this is how badly you needed to go to sleep yourself!" Boundaries. Very complicated to set. But today I am in a good mood. Lots of energy. I think I will do good things. Good morning gardener!

Tutti Frutti Sun, Jul 17th 2016 @ 5:58pm

Dear Gardener
Your situation sounds very difficult. I don't have any great knowledge or wisdom but I am just worried you are trying to push yourself too hard. Are you sure your children want you to keep battling on rather than ask them for help? Anyway love and hugs TF x

Otir Sun, Jul 17th 2016 @ 7:26pm

Gardener darling,

Just popping in here - as I had promised some time ago to do even though I am not so often keeping my promise - just to say that your blog touched me and I simply want to be able to virtually hug you. Thank you for sharing your journey. Sending as much love and light as I can. ~ Otir

The Gardener Sun, Jul 17th 2016 @ 8:54pm

Utterly overwhelmed. One of my local 'watching committee' popped in to 'check'. Her mother is further on the journey than Mr G. We chatted in the sun in my lovely presbytery garden, then listened/watched Haydn's Mass in time of War - what singing. The Proms, of course - going back with another glass of wine to Faure's Requiem - Mr G in bed - thank you all - much strengthened,and in Joyce Grenfell's rather old-fashioned term, 'nourished'. And Tutti Frutti - on a sad note three out of our five children are 'in denial' not worried about us as long as they don't have any responsibility. One feels sad, naturally, but it seems many families just can't face the overwhelming demands of dealing with any handicapping or debilitating illness.

caring Mon, Jul 18th 2016 @ 8:13am

Dear Gardener

facing up to life's difficulties is something that unfortunately I know only too well. Being caught between trying to do the right thing when inside is screaming 'run away' tears a person's soul into pieces. The only way I found to deal with it is to give myself over to the care of others as much as possible - to open up and say how much I feel the hurt. Then I can allow others to help - and commit to them to give them agency. Only in this way have I been able to benefit from others' knowledge, compassion, and where appropriate professionalism.

Caring is about caring for ourselves as much as it is for caring about others.

Mary Wednesday Mon, Jul 18th 2016 @ 11:11am

Just to say, once more, how much you give us, when you share so openly and courageously. Thank you. We here cannot give more than a touch of virtual support (a real hug from a person physically there is so much more sustaining) but please have a virtual hug (late) from me.

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