Saturday, 4 October 2014

Not Waving But Drowning.....

The world doesn't feel quite right if I don't write at least once a week. These last 17 days though since Pops died have gone by in a blur of emotions and stress and anxiety and guilt. One of the things I need more than anything is to sit down, on my own, and have a good cry. What worries me is the first time I might get to do that will be at the funeral.

I've never organised a funeral before. It's a really tough thing to do! And there is a lot to "do". Lots of decisions to make about things you just don't want to have to make decisions about and lots of second guessing what people might want and need at the service. I've had to choose flowers for everyone and try and make each arrangement personal to the giver, be it Nana or TCM or me and the children.  I'm disappointed by the lack of input from other immediate family members despite being asked to provide memories for the Eulogy. The tumbleweed has been very noticeable which makes me sad because there is much of Pop's life that will remain unacknowledged in the Eulogy. 

A funeral is definitely the strangest thing I've had to organise with some odd terminology that, if it were appropriate, I would want to giggle madly at. I can childishly barely contain myself at times when talking to our Funeral Director. He's a lovely man but he has that sort of calm and serious voice that people who work in areas of sensitivity have. I can do that voice when counselling so I hear it in other people. He also uses phrases that are designed not to offend but make me think of the Fast Show. He keeps referring to Pops as the "loved one" which I find amusing and slightly creepy in similar amounts.  There are decisions to be made about embalming and the curtains at the service. I think my need for humour is what is preventing me from falling apart though. It's definitely how I keep myself strong.

And I need to be strong at the moment. TCM needs to be able to rely on me but I am finding it hard to manage everything that is needed without dropping many of my marbles. I've organised the funeral pretty much single-handedly, other than chosing the music, which has been an emotional stress because I don't want anyone to feel I've taken over or to organise something that's not right for everyone. I've written before about Nana having Alzheimer's and Pops was her main carer so his passing leaves some big issues to resolve. Priorities such as care for Nana but also dealing with the fact that he left no Will and has therefore died intestate. Nana is unable to take over the financial responsibilities because she doesn't have the mental capacity so we will have to seek Power of Attorney. I have organised emergency Carers for Nana and a new care package is taking effect from Monday and have been trying to get over to her twice a day but it's proving impossible with Pip in tow. Nana's house isn't suitable for a crazy toddler and I have lots to organise when I get to her house as she's really unable to do much for herself. It's not fair on him to be strapped into the buggy sat in front of CBeebies all the time. I feel ridiculous amounts of guilt about Nana and her safety and I've had huge arguments with Social Services about this. 

Nana's Alzheimer's is progressing quite rapidly and her actions and behavior can be unpredictable. She understands her husband has died and is reacting appropriately with grief but her brain lacks the capacity to rationalise other things. She doesn't understand she has Alzheimer's and can't understand why the carers need to come in. She told me she is capable of "sorting herself out and can wash her face and hands and put her clothes on". Yes she can do that but feeding herself and putting the waste food in an appropriate place plus looking after the cats and the household affairs are beyond her now and she is unable to recognise that. She made a cup of tea by putting the tea bag in the kettle this week and we've just discovered her latest food hiding place...down the, now almost blocked, toilet.  She wants to stay at home long term and we'll help her do that for as long as possible but it's not really the right place for her. She's depressed and lonely and vulnerable, hence my guilt and worry. I totally understand her need to be in familiar surroundings and TCM and I worry a move could be permanently detrimental to her health but there's the safety issue to worry about and the progressiveness of her illness. Both routes lead to feelings of guilt and anxiety.  Nana doesn't want to attend the funeral which I understand.  How on earth can she go to an event where there are people she is supposed to know but is unable to remember?  How overwhelming at a time of grief might that be for her? She has been unable to participate in the arrangements although I did manage to help her think of some flowers for his arrangement.  I suspect I will have to write the card from her which makes me want to weep with overwhelming sadness.  How do I write what she would want to say if she were able?  Nana has no tangible memories of Pops other than the fact he was there and now he has died.  She was unable to remember how they met or what they used to do.  She has a few lingering memories of recent weeks probably but that's about it.  That is 48 years of his life unaccounted for other than TCM's memories, which is incredibly sad.  Those are her emotions and memories that have been eaten away by this horrible illness and even those few tangible memories will soon fade away possibly to the point when she doesn't remember him at all.  Can you imagine not remembering your husband, wife or partner or someone else you love?  I am unable to wrap my head around it all.

On top of all the funeral arrangements we are still full steam ahead with the house build. I joked that only I could speak to the Coroner on one phone call and then answer a call literally seconds later from the builders merchants about bricks. I'm trying to pop down to the house most days to check on the builders and progress but there are only so many hours in the day.

When at home Katie is obviously still her lovely challenging self and I have even less emotional and mental capacity to stay on top of it all although we appear to be having a modicum of success over bedtime....finally.  This is mostly because I've finally discovered something she really wants as an incentive. Katie wants a personalised t-shirt for her musical theatre after school club, as sold by her dance teacher. I've said I will buy it if, and only if, she gets 7 tokens from me for staying in bed at bedtime. They have to be consecutive tokens as well, so she has to go straight to bed and to sleep with no getting in and out of bed and no tantrums. I've been sitting outside her bedroom every night to keep an eye on the situation. So far she has managed 4 nights before it all goes wrong and we have to start again. She was even asleep by 8.44pm one evening, the earliest time since March. In the past it has generally taken her a week to form a new sleep habit and this is very much a work in progress still.  However, sitting outside her bedroom for an hour and a half each night is time I need to sort through paperwork and make plans with TCM so I feel quite stressed and frustrated about it all. I'm hoping some pressure will relieve after the funeral on Monday although I suspect it will just be one less thing to think about. 

One thing I'm finding really tough is the lack of practical and emotional support we have, which is really highlighted at a time of crisis like this.  Both Nana and Pops kept themselves to themselves so there aren't regular visitors to break up the loneliness for Nana.  I am unable to sustain seeing Nana every day long term but I'm anxious about her fragility and vulnerability. I've never been involved in organising carers before and have scare stories of thefts and mistreatment in my head. I'm going to have to trust that they will be kind to her. The manager seemed nice enough and reassuring but my instincts are all off at the moment so I'm not sure I even trust my own judgement. The lack of practical family support pushes my emotional buttons as well as my stress buttons. I'm stuck feeling like I need to put on my cape and Lycra shorts and take on the world but, coming off the back of my long term Vitamin D deficiency, I don't really have the energy or fitness to sustain that. Poor Pip isn't getting the exercise and stimulation he needs which concerns me. I'm trying to get them both down the park as much as possible for a run about but our routine is totally shot to pieces. TCM is trying to juggle work and the house build plus his own grief so I'm trying not to expect too much from him but I can't be a one woman band for the longer term. I'm already starting to feel grumpy and resentful and tired and fed up and tearful and quite angry and very, very selfish as a result. I've been lucky to ask some friends and a cousin to look after Pip during one or two key meetings for the funeral and another friend is looking after Pip during the funeral but that's just a few one off's. I need to wrap my head around the longer term because I've realized that life has now changed for the foreseeable future. I feel cheated really because I just want time to spend with the children we waited so long for and to invest time helping Katie with her difficulties at the current time. I also need some time for my own interests. Other family members may want to visit Nana but the difficulty is that she doesn't always remember people and she might not answer the door. I'm not going to give the key safe number to everyone because that is to keep Nana safe and the key is for the carers so it means I will have to be there to let people in and that's a) not practical and b) defeats the purpose of others checking up on her. 

I'm particularly angry with Pops at the moment for leaving everything in such a mess and that is over-riding the feelings of sadness and loss for the man who has been my lovely, surrogate father for 25 years. I am sad that he clearly had too much on his plate but I am angry that we offered help for many years and that I've been nagging him since February to help us with Power of Attorney so that we didn't end up in a mess if he died. So we've ended up with no Will and a beneficiary who doesn't have mental capacity to manage her affairs. It will take months to get through the Court of Protection and Nana has little money until that time which puts added financial pressure on us at a time when we're using all our money to rebuild our house and spending a fortune living in rented accommodation. His financial affairs will take a long time to sort out and we have so little time during the day to sit down and sort it all out once the day-to-day requirements of the children and Nana are taken care of. Due to Katie's bedtime antics we rarely eat dinner before 9pm which is making me feel physically uncomfortable in the mornings, not to mention playing even more havoc with my already expanding waistline. I'm also angry with myself for not coping effortlessly and for feeling whingy. 

On top of everything else there has been the dilemma of whether Katie attends the funeral or not. I've been to and for and every emotion in between thinking about it. Katie, quite simply, does. It have the emotional capacity to cope with the grief of others. She's only 6 and emotionally way younger than that. She laughs at me if she sees me crying so I'm not going to put her in a funeral situation. I think I am going to pick her up from school early to attend the Wake though and she will be the Chief Balloon Letter-Goer for the letting go of the balloons and messages. I'm trying to enable her to access and express her feelings about it all at a time when I don't even understand my own.

I recognise that things will evolve and change and find their pattern and that we are currently operating in a crisis situation that is highly charged with emotion. I am currently running at beyond capacity and just feeling overwhelmed, hopefully that will change with time. My phone literally does not stop ringing with calls from the Carers and the Builder or the Funeral Director. I'm beginning to hate my ringtone. It's all heightened by the fact that we're rebuilding our house and not living at home or feeling settled. Hopefully we'll be home in Feb/March 2015 to our wonderful new home. Currently though I need most of my energy to manage Nana, TCM, the house build, the finances, homework, violin practice, swimming, gymnastics, carers, Social Services and the children, with one hand held behind my back, and am worried about how all this added instability and upset to the routine will impact on the children. Katie is already presenting with very challenging behavior. Her anger and aggressiveness is something I am struggling to manage therapeutically at the current time. TCM is suffering from hypertension and is withdrawing emotionally and practically as he struggles to deal with the death of his father and workload pressures (and added high blood pressure) plus the worry of his mum. Pip is very much a typical emotional toddler, melting down and lashing out at everything he perceives is unjust or out of his control.  His routine is all over the place and he is tired and grumpy.  I feel the same as Pip a lot of the time if I'm honest. In fact I may just change my name to Sylvia Plath, without the dramatic ending though...more of a "Not Waving But Drowning" sort of concept. 

I churlishly don't think people/family understand, or care, how stressed I am.  I put on Facebook recently that I was a woman on the edge and people (mostly) just clicked "like".  Did they think I was joking? I'm not good at asking for help, in fact I find it ridiculously difficult, and the reality is I have no idea how people can help.  A few close friends have been wonderful in offering to have Pip for meetings and one lovely friend brought us some dinner one night which was so kind.  I just don't have enough time to sit down and work out how someone else can help though but I do know I feel very isolated and really, really upset that it seems that no-one seems to care and I feel doubly disappointed for my husband who deserves better.  I find myself comparing my situation with others and wonder why others seem awash with offers of help and public displays of affection and emotion yet here I sit wondering what on earth we've done to warrant this lack of support. 

I am so sad that people haven't shared of their memories of Pops despite being asked. He was a lovely, if incredibly private man, who kept himself to himself and often separate from others.  He didn't always make it easy for people to feel close to him but I know he cared a lot about us and the children.  He tried hard to be Nana's carer and I am beginning to realise how tough that was for him.  We tried to help him with that but he wouldn't accept any help.  We often joke that he was so private that we wouldn't be at all surprised to discover he's been working for MI5 all these years.  I suspect that people close to him found it difficult to connect with him at times and this is why they've not been forthcoming in sharing memories but I'm sad that we can't fully reflect his younger years at the funeral. 


For what it is worth though Pops, I loved you very much and I thank you for all your kindness over the years and will miss you and your experimental cooking.  I'll think of you every time I make cauliflower cheese at Christmas because I used to make it for you and I will hope that you are free from the pain you felt physically since your double lung transplant and the heart problems and cancer that eventually took you from us.  Sadly we didn't know about the latter illness and we wish you hadn't soldiered on stoically, not seeing the GP, so you might have had a diagnosis and possibly treatment.  Be at peace dear man and know that we will work our way through all the mess and take care of Nana for you.

So back to it all then......


20 comments:

  1. So sorry for your loss.

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  2. You are one strong woman. Hang in there, everything will pass and get sorted out. Your family are lucky to have you at the helm even though it's extremely tough and lonely for you atm. Lots of love for an easier time soonest. xxx

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    1. Thank you my lovely. Thsts so kind. It will pass and a different reality will set in and become normal. Eventually the feelings of panic will fade, I hope lol xx

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  3. This is such a sad account of an impossible situation. I don't know you, so am unable to help in any way except to say that I admire you enormously and the great efforts you make to support everyone around you. One of my favourite quotes is "All shall be well, and all manner of things shall be well." Its hard to believe sometimes, but I truly hope it proves to be true for you.

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    1. Thank you and thank you for sharing the lovely quote. It will all be well. I'm not a negative person as a rule so I can see that. There are times, like now, when it's so,helpful for someone else to,highlight that xx

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  4. Sorry to hear you are having such a tough time. You are being very brave and it is your strength that will get you and everyone else through this. Keep on doing. And allow yourself some quiet time to cry. You will come through.

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    1. Thank you for replying. We will come through and thank you for your support xx

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  5. Gem you are doing so well at the moment holding yourself and everyone else together. Funerals are never easy to arrange, and not particularly pleasant either - but I know what you mean about the language used and having to suppress the odd giggle. I know I felt alone and responsible for everyone and everything when I lost my dad, but in reality people didn't know what to say, how to help, and were worried about sharing their memories in case they upset me...it doesn't excuse it, but that's how it was...
    Just keep hanging in there, and try to give yourself some time to grieve and cry.
    Lots of love xx

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    1. Thank you Vicki. That really helps. It's so easy to feel overwhelmed and isolated. Thankfully now the Funeral is over I've a little more perspective although still cross at the lack of family support. Still you get on with these things don't you and try and fathom it all out. It will all settle down a bit soon, hopefully xxx

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  6. Dearest Gem,

    Gosh, you really have got far too much resting on your shoulders right now... Please, please know that it is okay to cry, to fall apart sometimes, to drop a ball or (date I say it) let someone down occasionally!! Nobody can do it all and you are doing remarkably to be coping with all of this right now. I know it must feel like your are downing and falling short in places (that is only natural when you have so many responsibilities) but it is also totally natural to feel this anger, exhaustion, frustration and everything else you're feeling so please don't bottle it up for too long to try and keep strong for others... You are string enough just by getting up and doing all you can each day!

    Life is truly unfair sometimes and it is at times like this you discover your "fairweather friends" and even those who will beat you when you're down... I think times like this stretch you beyond your limits and you find yourself making decisions in a totally different way to how you might normally... You become more aware of just how much you are giving and also how you deserve to be given to a well and that brings a while new perspective to things...

    This is a terribly sad situation without all this pressure on you to sort it all out, so go easy on yourself... You will not be as emotionally and mentally able to cope with situations at home at usual, especially as you are physically exhausted too.. But there is time ahead of you to get that back on track, for now focus on what you have to do right now and the rest will all still be there in a few weeks time.

    Thinking of you so much and sending his amounts of love and healing thoughts xxx

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    1. Thank you for understanding Amanda and for giving such a helpful reply. I'm. It so good at going easy on myself. I do tend to keep going way past my battery optimisation period. I have realised that I can't keep,this level of frenetic energy up long term though so am taking need. Xxx

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  7. Im so sorry for your loss and the chaos of organisng life after it happens. I totally understand the lack of advice planning a funeral. My husband suddenly died (last year) and I was left to do it all on my own - my in laws were around, but would not give an opinion as they wanted me to choose! Take care and remember it is a season in your life that like everything else will pass.

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    1. I'm so sad to hear about your husband. What a shock to deal with. I hope things ate improving for you now? Xxx

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  8. I am so sorry for your loss, Gem. I have to say I think you need help - practical help, a cup of tea, a cuddle and some sleep. I don't know where you live, but let me know if there is anything I can do. Even if it is just listening to you on the phone. I don't think this situation is tenable. And I am sorry to say things can get worse, as it sounds like they might, before they get better. Poor you. I'm thinking of you.
    Have you got anybody who can help out? Even in the short term?
    xS

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    1. Hi Sarah. You're right. We do need help. I feel like I am chasing my tail trying to keep all the balls in the air. Having very little family support is a problem at a time like this and I've realised that my Eco Map didn't really stand up practically. I do have a wonderful friend who I speak to most days who mops up some of my stress but I worry about leaning on her too much. I'm hoping we'll eventually get on an even keel with the care agency for Nana and am going to look at using a local nursery for some sessions for Pip. It all costs money though until our 2 year funding comes in in January. With the house build and covering the costs for our rented house plus now Nana's house, that will leave very little money to pay for the fees for the time being. Hopefully once the house is rebuilt around March-time that will be one less thing to worry about. I just have to chug along as best I can until then. It is untenable really but it is the way that it is so we have to get on with it. I've had a call (finally) today from the SW allocated to Nana so I'm ever hopeful she might have some ideas - I'm a cock-eyed optimist, what can I say? LOL! I would say I'm a woman who is just about barely coping. There are so many things not happening well though and I worry about Katie's homework getting done and the visits to Nana daily prevent Pip getting the fun he should be getting. I'll just keep hanging on in there and see where we end up. Thank you for your concern though. It's really appreciated that someone can see how tough it is because I feel like I'm whinging all the time xxx

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  9. I can only send you live and strength. I trust life will calm down to somethingyou can more easily swallow in the weeks after the funeral. Best x

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    1. Thank you Gettina. I don't think it will for the time being but one day it has to eh? ;) LOL xx

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  10. We are about to adopt and so I came across your blog. Having read this post, I didn't want to read and run! I'm so sorry to hear of your loss and how alone you feel :( You are being so strong and I agree with what someone above said, often it is not that people don't care it is just so difficult to know what to say or do to help. Know that all you are managing to do for your family is nothing short of miraculous and I am sure there are many of people thinking of you but just unsure how to show it. Be sure to take care of yourself!

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    1. Hi and welcome to my blog. I'm excited to hear that you are about to adopt. Have you been approved and matched? I'd love to hear more. Thank you for your message. I do appreciate it. Good luck with everything happening for you xxx

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