As is wont to happen, if you update your blog as regularly as I do, aspects of your personal life tends to seep out onto the pages. Although I am fully aware I have a tendency to perhaps over-share, I seem to find it impossible to resist, as this blog is in effect my web-diary as well as the place where I share all the music I’ve enjoyed over the years.
Likewise, I’ve almost stopped counting the number of times I’ve put up a warning I might be absent for a while, only for you loyal followers to find me back in action soon afterwards. Some of you will remember I did that recently, and then wrote a short post explaining why – Right at the start of September my 83-year-old mum had a bad fall, but after taking her to A&E to be checked over, she was proclaimed fit to go home. A very fraught week followed, when just at the time I was supposed to start my long-awaited college course, I had to pretty much provide round-the-clock care for her. It became apparent however that something was very far wrong and after a particularly bad night spent entirely in her living room chair (as she was unable to move), I bravely pulled her flat’s emergency cord to summon help.
It was such a relief to see an ambulance arrive soon after and the guys who piled into her little flat were just brilliant, dealing with my poor mum in a really professional and sensitive manner. It was decided to take her back to A&E where we both spent a long day waiting for the results of tests and X-rays. In fact it wasn’t until around 2pm that I realised I’d not had breakfast yet, but such is the lot of an accompanying relative. By mid afternoon we knew she had fractured her pelvis and it was decided to transfer her to the smaller community hospital which is fortunately situated quite near to where we live.
We are now nearly four weeks on from that momentous day and her physical recovery is going well. I visit daily, but on week one of her stay I suddenly became dog tired, as I think the adrenaline that had kept me going until then, suddenly left town. By week two however I was starting to feel like my old self again. I was able to return to blogging and managed to leave some comments on the various blogs I follow (I even managed to play Rol’s Saturday Snapshots!). As mentioned a few weeks ago, the college course was now a non-starter, but thankfully they let me reapply as a part-time student and that is going really well. Mr WIAA and I have also had a bit of a social life of late, visiting the theatre, the cinema and taking DD and her lovely boyfriend out for food. Even our little online store seems to be picking up lots of orders, as I’ve had the time to properly market it for the first time in quite a while. Life, as they say, is sweet. My mum is being well cared for, and I’ve got my life back on track.
So what’s the problem I hear you ask? Well as those of you who follow this blog know, I’ve spent most of this year struggling to cope with that most dreadful of non-physical ailments which affects so many older people – My mum’s dementia, or specifically in her case, Alzheimer’s Disease. I am reminded of something from Billy Connolly’s latest stand-up routine. “I’ve got Parkinson’s Disease”, he says. “But I wish he’d f**king kept it to himself”. Yes Billy, and I imagine all of those with Alzheimer’s feel exactly the same way, until the time comes when they are no longer even aware of their affliction.
I know there will be moves afoot in the very near future to send her home again. Beds are in short supply and that awful term “bed-blocker” gets applied to so many old souls, who by sheer accident, have found themselves with a fractured hip or pelvis after tripping over a kerb, or in my mum’s case, falling down some stairs. These are people who perhaps kept the home fires burning during the war, raised a family, carried out good deeds for their community, worked until retirement age, and paid taxes. At this stage in life however, they are called “bed blockers”, old folks who seem to be treated as if they are deliberately hogging a hospital bed through sheer ill-will.
Of late I have taken to sneaking in and out of my mum’s hospital room when the nurses are away from their work station, such is my fear of being told I can now take her home. The dementia has ramped up to a whole new level since being in hospital as the daily routine I used to organise for her is no more. I have been reassured by others who have been in a similar situation that she can’t be sent home without a discharge plan, but the worry is still there at the back of my mind. I’ve got my life back, and am reluctant to return to how things were.
As someone who has no siblings, I have been feeling the burden of care acutely of late, and ironically, after waiting for eight months to get help from the social care system, I finally got the call a day after the admission to hospital. They always say there has to be a crisis in order to get help and it seems that is indeed the case. People of my mum’s generation are living longer due to advances in medicine, but sadly, family life has changed. Most of us live in relatively small houses compared to those of my grandparent’s generation, so often no scope for taking in our old folk. The state pension age is now 67, so often no-one at home to do the caring anyway. Also, in the case of dementia, 24 hour care will eventually be needed, so not something many of us would be able to offer anyway.
Big decisions are going to have to be made soon I suspect, and it’s at times like this I wish I could turn to my dad for advice. He was one of my best friends but died a full 15 years ago. By sheer chance I heard this song on the radio whilst coming home from a hospital visit the other week and it has stuck with me. I think the host of the show was Whispering Bob, who at the end of the song said it was by John Prine. Until I started writing this blog I had never heard of John Prine but he often pops up over at CC’s wonderful place and has featured in Jez’s Sunday Morning Coming Down series. Whatever, despite being a bit of a non-believer, I was taken by the lyrics to When I Get To Heaven, written for his new album “The Tree of Forgiveness”. I realise this song choice might appear insensitive for the theme of this particular post, but trust me, the reason I picked it was because of these lines of lyric:
And then I’m gonna go find my mom and dad, and good old brother Doug
Well I bet him and cousin Jackie are still cuttin’ up a rug
I wanna see all my mama’s sisters, ’cause that’s where all the love starts
I miss ’em all like crazy, bless their little hearts
Yes, there is nothing more I would like at the moment than to go find my dad, and ask for his advice (or is it perhaps “his permission” I wonder). Heck, listening to this song, I’m almost prepared to be converted, as there is a definite party atmosphere going on. John Prine has apparently been treated for cancer twice, and it was after his second bout that he wrote this song about some of the things he had to give up following his illness. Here is a quote: “I wrote that song because I figured there’s no cancer in heaven. So when I get up there, I’m going to have a cocktail and a cigarette that’s 9 miles long. That’s my idea of what heaven is like.” Way to go John.
When I Get To Heaven by John Prine:
I’m sorry if I’ve made anyone feel uncomfortable by mentioning such a personal family issue, but hey, our blogs sometimes feel like the most anonymous places we can turn to when a bit of writing therapy is required. From experience, our Facebook friends don’t want to hear of our woes, although if anyone ever does respond it is usually because they have been placed in similar situation. Likewise if anyone out there in the blogosphere has been in such a situation, I’d be very interested to hear your thoughts – Any advice gratefully received.
Until next time, I’m off to give John Prine another whirl. Now 71, and still with us thankfully. Heaven is going to have to wait a while yet.
When I Get To Heaven Lyrics
(Song by John Prine)
When I get to heaven, I’m gonna shake God’s hand
Thank him for more blessings than one man can stand
Then I’m gonna get a guitar and start a rock-n-roll band
Check into a swell hotel, ain’t the afterlife grand?
And then I’m gonna get a cocktail: vodka and ginger ale
Yeah, I’m gonna smoke a cigarette that’s nine miles long
I’m gonna kiss that pretty girl on the tilt-a-whirl
‘Cause this old man is goin’ to town
Then as God as my witness, I’m gettin’ back into show business
I’m gonna open up a nightclub called “The Tree of Forgiveness”
And forgive everybody ever done me any harm
Well, I might even invite a few choice critics, those syph’litic parasitics
Buy ’em a pint of Smithwick’s and smother ’em with my charm
‘Cause then I’m gonna get a cocktail: vodka and ginger ale
Yeah I’m gonna smoke a cigarette that’s nine miles long
I’m gonna kiss that pretty girl on the tilt-a-whirl
Yeah this old man is goin’ to town
Yeah when I get to heaven, I’m gonna take that wristwatch off my arm
What are you gonna do with time after you’ve bought the farm?
And then I’m gonna go find my mom and dad, and good old brother Doug
Well I bet him and cousin Jackie are still cuttin’ up a rug
I wanna see all my mama’s sisters, ’cause that’s where all the love starts
I miss ’em all like crazy, bless their little hearts
And I always will remember these words my daddy said
He said, “Buddy, when you’re dead, you’re a dead pecker-head”
I hope to prove him wrong… that is, when I get to heaven
‘Cause I’m gonna have a cocktail: vodka and ginger ale
Yeah I’m gonna smoke a cigarette that’s nine miles long
I’m gonna kiss that pretty girl on the tilt-a-whirl
Yeah this old man is goin’ to town
Yeah this old man is goin’ to town
What's It All About? 
Oh my
As a 58 year old with “Summer’s End “ just been playing on the iPod and having visited the aged parents a couple of days ago; hell thank you
Music and love is the best way forward
Jules
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Hi – Thanks for dropping by. Yes, you’ve mentioned before that you are one of several in this little community who is the same age as myself. That means of course we will probably share similar family experiences. Hope I wasn’t too whingy here with my story because I truly feel so sorry for older people with health issues, it’s just that of course it ends up affecting everyone in the family. Wish there were more resources to help with care.
Anyway, wasn’t really that familiar with John Prine until I discovered him via some of the other blogs but now I have quite a few of his songs in my library. (Just listened to Summer’s End as well – thanks for pointing it out.)
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Hi Alyson,
I’m so sorry that I’ve been absent from these pages. My family chaos has been going on now since 5 minutes after we arrived back from our vacation on July 9th. In the ensuing 3 months, I’ve lost 10 pounds from worrying and constantly obsessing about finding a solution. I read your post very carefully and it’s so beautifully written, despite what you’ve been going through. (Writing doesn’t offer the same sort of release for me, unfortunately.) If only I could offer some words of wisdom or advice, but all I can say is that many in our little community are empathizing with you.
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Oh Marie, I’m really sorry you’ve been having your own worries and don’t seem to be finding a solution it seems. Losing 10 pounds in three months is not good though – Something needs to be done. I did lose some weight when I was really busy with my mum but over the last few weeks, since she’s been in hospital it seems to have gone on again – Being relieved of the worry I suppose.
Yes I have decided to take to these pages and bare my soul BUT not for everyone I know and I respect that you don’t really want to share in that way. I have no doubt there are lots of us in a similar position and will indeed be empathising. Comes to us all at some point. Thanks for your kind words and for dropping by. Take care.
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Your mum needs to be somewhere where she can be cared for. Around the clock. And that’s precisely where she is right now. No one in their right mind, let alone some weasly hospital bean counter, should be able to throw a vulnerable pensioner out of bed and onto the street.
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As someone who was an NHS “bean counter” until this time last year, there is a certain irony to the situation. I was not however weaselly, and was never at the sharp end, making such big decisions that affect patients and families so much. Even the managers who do have to make the decisions though are of course not doing so out of malice, but because of the system we have found ourselves in – We are not currently a society who seems to champion dignity in old age.
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Ah Alyson, I’m glad you’re comfortable enough to share this – it’s life and it’s you and it’s real – we may not be able to offer solutions but we can listen and I hope very much that knowing you have a safe outlet here (even if you change your mind further on) is helpful in some small way. There’s a lovely blog I follow (you can find it in my sidebar) called Bug Woman – Adventure In London – and I love reading it because it’s right up my street as it has a nature theme as well as being absolutely beautifully and warmly written, but if you pop over and have a look at the latest posts you may find some solace in similar experiences being expressed there too.
In the meantime, yes – music and love as Julian Badenoch says! You can only do what you can do, and you have to hold on to yourself, for everyone’s sakes. I’m also a bit of a believer in “asking the universe” – maybe it’s just the psychological process of doing so that acts as a comfort, whatever one’s beliefs or lack of them.
Interesting lyrics here too – and as a completely non-religious person, I still like to think that perhaps there is some kind of parallel plane that we can’t even begin to imagine – where our souls (or whatever that indefinable thing is that we refer to as a soul) may well ‘meet’ again. There are so many things in this world that we just can’t explain.
Sending love and best wishes x
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Oh you know me C, every now and again I pop up with a “heavy” post like this as it feels cathartic to get the story down on the page somehow. Also I know you had a situation yourself earlier on this year that consumed your daily thoughts, so you will know where I am coming from. I will definitely check out Bug Woman – sounds as if we have a lot in common.
As for “asking the universe”, yes I’m with you there. Perhaps it was all this delving into the old religions for my Wheel Of The Year series last year, where nature was the predominant force in guiding people (also my Moon posts have been life-changing!), but yes I also think at some point we will move to a parallel plane where we meet our family and friends who have gone before. That was what tickled me about the John Prine song – I so want to meet up with my dad again as I know he would guide and advice me on what to do. Who knows – Maybe our dreams are actual reality and this physical world we live in is the parallel, unreal one. Just so much we still don’t know. Thanks for the best wishes.
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It’s a rough road you’re on. And rougher for your mother. It’s very troubling to watch our parents decline. I hope that the situation will be manageable. I send you my best.
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I really hope I didn’t come across as callous here, as I know just how rough it has been for my mum this year. She is definitely declining but somehow because of her particular type of illness she is largely unaware of the decline, which is a good thing. As for the fall, it was painful and traumatic at the time but you know what, I can tell she is quite enjoying being cared for in the little hospital. She is sharing a room with another lady so they have been great company for each other and always something going on. So much better than the loneliness of living on your own. Not going to last much longer though – I don’t know how it works in the US Neil but her weekly state pension would only pay for one day in residential care, the rest having to come from savings and the proceeds from the sale of your house. We are so lucky that we have our NHS but dementia is the one illness where care is not free at the point of delivery. A bit of a worry as once the savings run out, a move to a bargain basement facility might be on the cards and who would want that for their old folk.
Thanks for the best wishes.
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Hey there. Health care is complicated in the USA too. I’m not sure how extensively your mother’s condition would be covered here.
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I suspected so.
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I hope you get the help you all need soon, Alyson. The way elderly people – and their caring offspring – are treated in this country is scandalous.
That John Prine album is one of my records of the year.
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I am sorry to keep returning to this theme in my blog but as you know it’s been at the forefront of my mind all year. How our society has evolved of late (not just the fault of government either – part of something so much bigger), has in effect conspired against quality care for the elderly and dignity in old age. We’re all going to be there one day, if we’re lucky, so it really is time to start getting it right.
As for the John Prine song, I didn’t actually realise it was from an album just released this year – Look at me picking up on something from one of your records of the year without even being prompted. I must be learning something from you guys. Don’t think we’re really supposed to post stuff this recent in audio link form, but hopefully it will slip through the radar.
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I am sorry to hear about the trials both you and your mum are facing. It is difficult to accept the decline of the older generation. We went through a similar situation a few years back and the phase you are going through at the minute is the one we found to be the worst. At the minute you don’t have the answers to so many questions but we found that once the various agencies got their act together then things improved. It took a bit of push and the correct people putting on pressure but once they accepted the problem could not be solved by keeping her in her own home then things improved dramatically. In our case it wasn’t instant as a temporary stay in the equivalent of the cottage hospital was needed until a place in care could be found…but it did happen. What the care agencies did stress at the time is that you should not feel guilty about letting her be cared by others as (in our case) with dementia you could burn yourself out trying to do the impossible. In other words they stressed that we needed to take care of ourselves first to ensure we were able to do the best we could for our relative. Take care Alyson.
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Hi Ken – As a new follower you won’t have probably seen the many other posts I’ve written since the start of the year on this same subject (although to be fair some now have been heavily edited) – I try and stick to the music but not easy to avoid mentioning what is going on in the real world sometimes.
Thanks for recounting your similar experience – It definitely helps to hear of “the journey” others have been on. I think you are right, the stage we are at just now is the most difficult for all parties as my mum is not really capable of living on her own any more but not really quite far enough down the line (if you know what I mean) for a care home. As you say, now that there has been a crisis, the various care agencies will have to get involved so my worries about her suddenly being sent home with no warning should not come to pass. We’ll see. I think the key phrase in your comment above however is “a few years back” – Yes, a few years back our local authority still had Care at Home workers on the payroll but that service has now been entirely farmed out to the private sector. Care homes are closing at an alarming rate (at £1250/week/per resident, how can they not survive?) and Social Work Services is stretched to the max. I can totally see how people burn out trying to do all the care within the family, through guilt as you say, but so far I’ve not had much in the way of reassurance that I shouldn’t feel that way. The best I’ve had so far, is an application form for a few hours of care so that we can have an evening off (?!) and a card for my purse to alert the authorities that I am the sole carer for another adult should I be in an accident and killed or rendered unconscious. Sorry I’ve gone on a bit but you can probably see how I am quite enjoying her stay in hospital.
Again thanks for dropping by with your story – It all helps. The awful thing is that our children will no doubt be writing similar tales about us down the line on whatever medium is around in the future. Can’t imagine things are going to get any easier either.
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Alison,
Your mum’s situation is a bit similar to my mum’s
She had Parkinsons and had carers visiting the house daily. She then had a fall, broke her hip and ended up in hospital. After a while they decided she no longer needed hospital based clinical care and she was required to move.
The options were back home or a care home. Her moblity was such that going home was not an option and she went into a care home where she was well looked after for 15 months before she died.
If a person has capital of over 13.5K in Scotland they are expected to contribute financially to their care until their funds are exhausted. (Social work may make a small monthly contribution). This usually involves selling your home if you own it. It is quite galling that someone who has worked and saved for years finds themselves in this situation where others don’t
Has your mum been assessed by Social Work and by an OT?
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I suspected from following your blog over the last few years that you’d been through a similar scenario – Yes, it seems that once the falls become more regular, going home is not an option. Also with dementia, it is not really safe to be left with appliances etc. In the short term I have a feeling she will have to go back home however, and despite the fact she has always been adamant she didn’t want “anyone coming in”, I don’t think she’s in a position to refuse them any more. We’ll see. As for the care home, if that situation arises yes I know, you are just left with enough to bury yourself. It does sadden me that my mum has always been so proud of being good with money, thrifty, and saved hard over the years. Would have been better perhaps to have treated herself a bit more. Oh well, ’tis the world we live in.
No we were just at the stage of waiting for an official assessment when this accident happened but it will come soon I expect. Don’t worry I didn’t have any issue with your last sentence! I knew perfectly well what you meant but will do a quick edit if you prefer.
Thanks for sharing – It does seem wrong for us to talk about our old folk on an open forum like this but my mum is totally anonymous here and I am speaking generally really about the issues. It seems many of us are/have been in the same situation.
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It’s good that you find strength from music. Will it work for you mum too, I wonder? My dad is in a home (after a similar journey to several described above – fall, dementia, not able to cope alone) not too far from my brother. He used to play the piano before he lost his sight, and he still remembers the tunes!
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Hello Graeme – Thanks for sharing your experience. Similar to many of us then, the falls, the dementia, not being able to live alone.
Interesting what you say about the music. Yes, people with dementia have little short term memory but old songs and pieces of music can be recalled no problem. My daughter is quite good at showing my mum clips on YouTube of the singers she loved when she was younger – Jim Reeves et al!! Sadly, when you have been so busy organising the practical side of life, the shopping, meals, washing, finances… , when you get some free time it’s hard to then muster up the energy for memory boards etc. Luckily they do a lot of that in care homes though so if that is an option for down the line, she will be entertained I’m sure.
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Great post, Alyson. There is such a crisis of care in this country. Is your Mum still in hospital? I doubt they would release her without there being suitable care in place, but what that might be is open to debate of course. Wishing you luck, and strength, and the chance to get your life back…
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Thanks for dropping by – Yes she is still in hospital but no-one advises that she should go home so onto new challenges in terms of care. I have seen one quite nice newish place but of course really expensive. Couldn’t contemplate any of the others. As you say, strength and luck is needed. Good luck with your ongoing situation too.
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