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Trying to be supportive to recently-widowed mother while suffering from long-term depression myself
This is the first time I've blogged: I've hummed & hawed about it for days and hope it will be useful to me or even better to somebody else...
My (absolutely gorgeous) 3rd husband retired in 2008 and started voluntary work with the National Trust as well as doing masses of long-distance walking, a favourite hobby. He and I had been together since 2005, both veterans of 2 failed marriages each, both with 3 kids tho his are all grownup. I wanted to get married: he didn't. Not surprisingly!
So J was happy & free & enjoying retirement and was buying a new house big enough for us and my 3 kids, near trees & fields & with a garden for him to potter in. Then, after having a routine checkup, that little lump that had been in his neck for a while, causing no bother at all, was diagnosed as tonsil cancer. Actually, it took weeks of panic & stress & extreme angst before it WAS diagnosed but that was that. Surgery to remove the healthy tonsil happened (still not quite clear why) then a bigger operation on his neck: massive scar which still annoys me: I do a bit of sewing & I'm damn sure I could've done a neater job. Another annoyance is that he still has a droopy eye caused by some nerve damage during surgery but these are cosmetic grumbles. We thought he'd had a stroke when we first saw him after the operation so shouldn't complain. But I do anyway, to myself. My poor boy.
Radiotherapy with the horror movie face mask followed. At first it went suspiciously well despite warnings about burnt skin and so forth. Then overnight (it seemed) J was in excruciating pain. As the treatment went on the inside of his mouth and cheek was horribly burned and so painful. He couldn't really eat/drink/swallow and his taste buds & salivary glands were badly affected. His intake of morphine went up & up and many tinkerings with prescriptions for morphine patches went on. They did seem to work, eventually. Eventually. Our Mac nurse was great: a real godsend.
While this was going on J's elderly mum (with fast-developing dementia) was becoming physically frailer and was diagnosed with cancer of the liver (a secondary, never found the primary source). She spent a week in hospital then a week in a hospice (a tranquil & light & airy place) where she died peacefully in her sleep in the wee small hours with her daughter and other son at her side. This was August 2009.
J and I visited her every day: he was so morphed up he doesn't really remember much of that. I do: I used to look at her dying in the bed and look back at him slumped on the sofa in her room, skinny & exhausted from the pain and try to decide which looked worse...
We got married in October 2009: J proposed in his quirky way the week before his radiotherapy was to start. It was a lovely happy wedding and all 6 of our kids had parts to play. Apart from having to drink little & often for his dry mouth, J recovered remarkably fast. Now, his sense of taste (in food if not wives) has returned almost 100%. His saliva is still very sticky, which makes kissing him a bit weird but hey, we're just fortunate to be able to kiss at all. I am very very very grateful to have him fit & we hope healthy.
2010 brought my father's prostate cancer diagnosis: a big shock but we were reassured that it was slow growing and treatable with hormone tablets and injections and perhaps in a year or so, radiotherapy. No surgery, no chemo. Sounded do-able.
It wasn't. Bone scan showed it had spread to dad's hip. A 'spot' on his liver allegedly came & went but with hindsight was probably there all the time. But he attended appointments, took his meds, got about... Then in Sept/Oct 2011 he went downhill very very very fast: he could't sleep in bed all night because of his hip & leg pain so would stay in an armchair downstairs. Because of this, we thought, his legs became swollen and his mobility decreased. He had several falls in the house & my mother had to get neighbours to help him up. (I live nearly 200 miles away and didn't hear all of this till much later).
Dad got an infection (from where, nobody knew) and after a lLOT of delays with local gp's and their useless appointment/home visit system, he was at last admitted to hospital. By which time he was delirious and shouting and swearing, which was alarming & upsetting for my mother. (Actually, at his best he was not a sweet-tempered person & neither is she so it wasn't exactly out of character...Mean, but true).
After a scan, it was decided that palliative care was the only option and dad was transferred to a Macmillan centre adjoining the hospital. At this point I was summoned.
J, 2 of my kids and I visited: it was obvious that we were visiting a dying man, not just a sick one. It was quite a shock. I had seen him in August with #1 daughter just before she went off to start uni and tho thinner and not very agile, he was mobile & cheerful & mentally alert. Now, he was an old man in a chair with terribly swollen legs and feet, jaundiced, and with his teeth out his speech was hard to understand. He was somebody else, a stranger.
We took the kids home and I came back up north to the hospice and stayed with mum til after the funeral. Those days had a dreamlike quality (not a happy dream): so tiring and such a starin on the nerves as he got weaker & weaker every day. He 'progressed' from sitting in a chair, to reclining in a chair, to sitting on top of his bed to lying in his bed never to get up again. He never walked again once in the hospice. The food tasted horrible, apparently (tho it was the foul taste in his mouth to blame. So he wouldn't eat. Everything he drank tasted bad too: many things were brought and tried to tempt him but nothing worked.
He had a cup of water, then a cup with a straw, then somebody had to hold the cup & straw for him, then he had hallucinations and was 'drinking' when there was nothing there. He saw things, felt things, swore, shouted, complained, tore at his pyjamas, tried to get out of bed, constantly complained that he was trapped and wanted to go home...said he felt he was in a nightmare & didn't know where he was... It was obviously very distressing for him and terribly frustrating. And not pleasant to witness.
Dad's last days once the morphine driver was working, were more peaceful but only because he was heavily medicated. He wasn't resigned to dying: he resisted it all the way. It was obvious that he wasn't ready or willing. He wasn't at peace and didn't want anything to do with the hospital chaplain.
My memories of his time in the hospice are of his bitterness and despair and distress. My mother and he very never demonstrative physically, either to each other or to me. (A bit more so with my children when they were little). But very very demonstrative with their succession of dogs. Bizarre or maybe not.
Anyway, he died at 3.40a.m. on November 8th 2011. I've written elsewhere on this site about that: it was a vile experience which I wish I hadn't had, but guess it was a necessary one....
And now, in April 2012, my lovely husband, J, is tending his 97 year old dad who has guess what, oh yes, prostate cancer. For the last fortnight (our school Easter holidays, by coincidence) he has been deteriorating on a daily basis. He has been in hospital to have a permanent catheter fitted but is adamant that he remainsat home. He has 4 carers per day and J or his sister or brother have been with him almost non-stop, including overnight. Today J is organising for another care agaency to send someone to call in during the night. I have lost count of the agencies involved. Mental health person was there yesterday: dad-in-law is depressed (no wonder) but nothing will be prescribed til after the much awaited scan next Tuesday. The scan that was meant to happen last week. The one where we find out if he is actually dying or if he has a blocked bile duct which they might be able to sort out.
So that's my Jolly Holiday blog.
My problem, if I can call it that, is that I am on the phone to my mother daily, trying to be supportive & positive & cheerful, while worrying about J who is wearing himself to a shadow for his beloved old dad. Dad-in-law IS a lovely old man, unfailingly kind & gentle & quite unlike either of my parents. J adores him & will be distraught when he finally dies. It's the not knowing: every time the phone rings we jump out of our skin fearing the worst. The dr says today she thinks dad-in-law has pancreatic cancer: that's a new one. What will it be tomorrow? It's not the label that matters, it's the treatment. At the moment, nothing at all.
What will be, will be.
I count my blessings (wonderful kids, husband, stepkids, stepgrandkids, home, HEALTH) and wonder why I still feel so depressed even on my good ole reliable Citalopram. I try not to be selfish and want more of J's company than he can spare. I try not to fret about going through the menopause or my daughter leaving home or my hours at work about to be cut or the fact that I wish I were retired and spent my days making baby quilts and scrapbooking... Or that there isn't anybody to confide in who hasn't got far worse to cope with. I feel so lonely and sorry for myself but I can't say it out loud because it seems so feeble!
So I've written it all down here instead.
Think I'll have a nice cold beer.........................................
Blimey!! That was a lot to go through and you wonder why you feel like you do? Hmmm.
Say ot out loud and don't feel feeble! We all have days when we feel lonely and feeble and miserable and we pick eachother up then and give eachother a hug, that's the way it works...
I don't really have any advice but wanted to send you a big hug alongside your beer.
I got an 'free' early menopause coutesy of the NHS. I have to say I was quite happy with it. No more periods, saving on the heating bills with the hot flushes...
As a teacher I know that feeling about not wanting to go back to school, but once you get back, you will forget and enjoy it and be glad to be there and if your hours are cut, then more time to spend making baby blankets????
I suspect the new coming grandson will give you a lift... babies have a habit of doing that.
So much for the no advice eh? haha I don't think putting a positive spin on things will help you much, so just giving you a big big hug
Little My xxx
No advice - wouldn't it be great if there was a magic wand we could wave and make all this awful stuff go away - or words of wisdom (not something I'm good at under any circumstances) but lots of hugs. You and your husband have been through way more than your fair share (which is a given, since a fair share of cancer would be NONE), it sounds as if you've weathered it way better than most of us would, and if you get a bit depressed - well, who can be surprised?
It's great that you and your husband found one another, and better yet that you still have one another. Long may it last.
I'm sorry about your father in law, though. He sounds like a lovely old man. Getting bloody cancer at his age is totally unfair, and if I knew who was in charge they would get a good hard kick from me.
Have a beer for me, my cancer is in my tummy and I don't dare drink. Dammit!
Thank you, Little My and Hilary B for 'giving me permission' to feel crap! I do feel a fraud since unlike you ladies I haven't (yet) been attacked by cancer. I am SO GLAD I came on this site. It's wonderfully liberating to have you to talk to and MUCH more importantly, to get a response from.
loads of love and hugs,
We'll do anything for a hug... ;) Thanks :)
And don't feel a fraud as this site is for anyone affected by cancer... and you certainly fit that bill!
Sometimes I think it is harder for the family and carers than us... cos we know how we feel and can be silly if we feel like it etc whereas you are always wondering and worrying and if we say we are fine, you are thinking, oh are they just saying that when they aren't really etc...
Basically, cancer is crap from all angles... so permission granted anytime!
I'm so sorry that you and yours are going - and have been going - through such pain and difficult times. It is so very difficult and frustrating watching people you love going through this and feeling helpless to do more....though sometimes I think it's easy to underestimate just what you are doing as it often feels to "never be enough". You have certainly been surrounded by this awful illness on all sides for some time and I admire you for the courageous way you have kept going and being there for everyone in any way you can. Of course there is often 'no choice' in this....but even so some people manage to find an excuse to walk away and not be there....emotionally or practically if not physically. As you know, I can certainly identify with some of what you have experienced....and can certainly nod in agreement at similar memories of some of the darker moments of your Father's illness. But you went and 'stayed the distance' and I think that is what counts. I had no idea of how horrific your poor husband's experience was and how terrifying that must have been for both of you.....the vast 'unknown' that this illness often brings with it is I find one of the hardest things to learn to live with. Thankfully, as you said, he is now "fit and healthy" which is great. I am so sorry to hear of you father-in-laws illness....I remember well that jumpiness when the phone rings.....awful. I do hope that Tuesday brings better news than you are perhaps expecting.
I know very well that feeling of being alone or lonely and not feeling able to talk about these things. I am by nature quite a loner though have perhaps lots of acquaintances....rather than real friends. But it would make no difference if I had a million friends as I find it so much easier to write down than say. I am glad you have written here and hope that a blog will also help you to let things out that do no good being buried inside. Also - as you mentioned - it can be helpful for other people to read of your experiences. When you wrote on my blog about your Dad's passing it was a great relief for me to know that some of my experiences with my Dad were not so rare as I thought....having nothing to compare them to I had no idea.
I do hope that you also manage to find some time to have for yourself and looking after you....it can be so easy to get so caught up in meeting everyone else's needs that you end up with no time to consider your own.
Take care xxx
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