Yesterday I did my usual shift at Lifeline. Family holidays are difficult times for a lot of people so, with Easter looming, I was expecting it to be a busy shift. And it was. Busy, and bruising. Despite glibly thanking MS for making me forgetful, two of the calls will stay with me. In both cases I was in awe that the callers were still functioning. In their circumstances I suspect that I would be velcroed to the carpet under the bed and flatly refusing to come out. And there was nothing I could do for either caller except listen to and to some extent share their pain. It didn't feel like enough. It isn't enough.
So I came home, knackered and still bleeding for them and for other people I had spoken to that day.
I knew that I would have trouble sleeping. So I read some trash which should have sufficiently occupied my mind. It didn't. On line to check out some blogs. And joy, Elisabeth had a new post. Her work is an education and a joy, and her prose beautiful. But yesterday and still today it hammers on my buttons. She was writing about death and dying, specifically about her mother who is in very poor health and whose death may be imminent.
So I went back to bed, and tossed and turned. I remember looking at the clock a little after 3. At about 4.30 I woke myself, my partner and both cats shrieking as a particularly nasty cramp/muscle spasm locked my calf tight. It still feels bruised and walking on it is painful.
A few hours later I gave up and got up. Thinking, thinking, thinking. My mother died just after Easter 2004. Memories. She had a massive stroke nearly a year before and had spent much of the intervening time in hospital, before moving temporarily to a nursing home. While in hospital she played hospital staff against family and attempted to play family members off against each other. As one example I was very, very tired having visited her each day and told her that I was not coming in the next day - I was going to have a rest. Shortly after nine the next day the hospital rang to say that she was in tears because I had said I was never coming back and that they thought I should come in and reassure her. I went.
She was adamant that she wanted to go home, and despite the fact that she was going to need 24 hour a day care the hospital administrators helped her to achieve her aim. Significant household modifications had to be made and private nursing care arranged. And yes, I was responsible for arranging both.
She had been home for nearly two hours when she had her first fall. She had always sat on the floor and, when her carer left the room she tried to sit there again. The carer rang me and I went down and helped her back into the chair.
The next day the carer rang me again. Mama had rung up her local supermarket and arranged delivery of bottles of wine and cartons of cigarettes, despite being without either for over ten months. The pattern continued. The carers would ring me several times each day and often I would have to get to mama's home (two buses away) and sort out a compromise.
Ten days after she returned home the carer rang me to say that she was very far from well and refusing medical treatment. When I got there it was obvious that she needed treatment so I called the ambulance, who took her straight to hospital. She was very, very angry and told the ambulance officers and the carer that I was being selfish and just wanted her out of her own home. True, I did, but that wasn't why I had called them. The hospital rang me just before 1am that morning to say she was dying. I rang my youngest brother and my partner and I met him at the hospital. She died shortly after we got there without ever gaining consciousness. And in our last interaction we were both angry. And I wonder whether if I had known she was so close to dying I would have allowed her to die at home. I will never know.
I did a lot for my mother over the period from my father's death to her own, but I did not do it with a good grace. Her alcoholism and manipulation made her very, very difficult to like. She went from a woman I aspired to emulate to one I was afraid I might become. And I still feel guilty, despite knowing that guilt changes nothing.
So, why am I pouring all this out? I read a truly lovely post this morning from Marie reminding me that I don't need to appear to be invincible. Just as well because I am not. Both yesterday's calls and my mother are haunting me.
You don't need to feel guilty. You did what you could, the best way you knew how, no-one can ask more than that of themselves. If your mum didn't appreciate you, that was her problem, not yours.
ReplyDeleteGoodness. Like Elisabeth's post, this one resonated with me. I know what it is like to try and do your best, when you feel that either your loved one or the system is whiteanting behind the scenes. To try and get so-called health professionals to take your concerns seriously while they look at you as though you are a selfish, heartless cow trying to offload responsibility for your loved one. And to feel stuck in the middle of a tug-o-war of loyalties. It's draining, soul destroying and something I hope never to have to go through again.
ReplyDeleteAll I try and keep in my mind when the doubts, the what-ifs and the I-should-haves or the I-shouldn't-haves crowd in is that I did my very best, I always thought of her needs first and that sustains me. Fortunately she died knowing we loved her, even if we never got to actually say goodbye.
However, I still smart when I think of the disbelieving looks from the nurses who were prepared to take the word of a confused, highly drugged, gravely ill woman with dementia who only ever wanted to please everyone and not be a nuisance, over the considered assertions of the family who lived with her and KNEW she wasn't eating, wasn't sleeping and was in constant pain. Eventually, they did discover that her assurances were not to be relied on, but by then it was too late and she died in a palliative care facility rather than at home where she wanted to be :(
I hope you find some kind of relief from the nagging doubts - and as you told me, those early morning hours are never the best to try and be logical, especially with something as emotionally loaded as your relationship with your mum.
Nuzzle those cats instead...
Thinking of you EC, with love and compassion.
ReplyDeleteMum died peacefully and quickly, Dad after nine fraught months as an unwilling nursing home resident... we had no choice, but I still feel guilty. I think this is human nature. I try not to dwell, we all do as best we can with the circumstances we are given. Life is messy, chaotic, sometimes there are no perfect outcomes. Be kind to yourself. xxx.
I can't recall ever, for even a few minutes, wanting to emulate either of my parents--wow.
ReplyDeleteI guess the best thing about her dying was that was only back home for ten days before it happened (not forgetting that she had been in the hospital for a year--almost NO ONE stays in an American hospital that long).. Peggy's poor mother lingered for several years, becoming every more miserable and demanding (her father was still alive). Like you, I was at least somewhat lucky in that regard--not you would necessarily agree that you were lucky--and I was also lucky in that I got to be with my parents when they died. Now, that they're long gone, I'm just relieved that I won't have to go through all that again.
River, Marie, Library Girl, Snowbrush: Thank you - your support means a lot.
ReplyDeleteWhile I was growing up my mother ran unofficial womens' refuges from spare rooms in the family home, taught English to migrants in her lunch hour, taught herself to make bobbin lace (and made the Speakers' collar and cuffs for the opening of the new Parliament house), read, gardened and cooked superbly.
And then she dived into the bottle. And became a manipulative liar. There was always a grain of truth in what she said, but it was often very, very small.
She stayed in hospital all that time because there was simply no where else she could go. She needed specialised equiptment and 24 hour care and there were no vacancies in the nursing homes until a temporary spot came up. I resented the hospital enabling her to go home. The household modifications cost nearly $20,000 and her ten days of care just over $11,000. Which wouldn't have been sustainable. Which the family said repeatedly. And when she died the neurologist said he was surprised that she had lasted ten days. He had expected her to die within a day or two of going home.
Rant finished.
i'm just going to offer you a sympathetic shoulder and a virtual hug from afar... and thank you for your supportive words. not gonna sleep much here in the trailer park annex tonight...
ReplyDelete"True, I did, but that wasn't why I had called them."
ReplyDeleteGosh, I do like you. Just wanted to tell you that, and that while I'm not commenting much, I'm reading you regularly.
Thanks daisyfae, Ms Duck. Lots.
ReplyDeletei'm lost for words. so i will just say that i've read the post and that i send sympathies and thoughts.
ReplyDeletei hope the rest of your easter weekend will be a restful one that leaves room for good thoughts and light in mind.
It was my mother's horror that she would end up in a nursing home which she has and she's blooming. Proper medication, pain control, good food and a comfy wheelchair not to mention company means she is happy although she still likes to see me at least two days a week. At home we knew it was only a matter of time before she fell and broke a hip and all the drama that would entail so we've avoided that. She's also back doing craft, bereavement cards for the other residents who seem to be dropping like autumn leaves.
ReplyDelete*Tearful hugs* I've started to comment a few times since reading your post, but have felt at a loss for words. You have no idea how much it resonates with me.
ReplyDeleteI suspect your mother likely would have died angry no matter what or when, whatever circumstances immediately preceded the event, for whatever reason, no matter what you'd done or not done.
You say you "did not do it with a good grace," but I read this and marvel at what a superhuman feat you endured, and at such a great cost, no doubt, to your own health and well-being. No mortal could have done more, and certainly not with a smile and saintly calm. To me, it seems the guilt is the manipulation that still has you in a chokehold from beyond the grave. You are one of the kindest, most obviously caring people I've met in this amazing blog world.
JahTeh: It sounds as if your mother is safe which is wanted I wanted (so much) for mine. But she wasn't having a bar of it. And I am so glad to your mother is not only safe, but finding enjoyment in life.
ReplyDeletePaper Chipmunk: Blood, sweat and tears. Tears of rage and grief for the mother I lost long before she died. And she was sad and lonely and I knew that too, but I couldn't/wouldn't accept the ways she addressed her loneliness. So when I got the call(s) I did what needed to be done, but I was frequently ballistic with rage that it needed doing at all. I remember going with her to her doctor and her telling the doctor that she was depressed and unable to look after herself because her daughter had MS. The daughter she leaned heavily upon. Grr. Thank you so much for your words of support. They mean a huge amount.
EC, you should go back 3 years on my blog and see how much I hoped she would go in her sleep before I shoved a pillow over her head. When she goes now, there'll be no regrets on my part, I might even shed a small tear but unlikely.
ReplyDeleteJahTeh: How I know about that one. After several years of increasingly off behaviour I worked out that if I soaped the shower recess heavily she would fall and be unable to get up and that broken bones (or even just shock) followed by hypothermia would take her out. And then had to tell people of my plan so temptation wouldn't get the better of me. And then she stopped washing so it was no longer a possibility. And I did my grieving a long time before she died.
ReplyDeleteI have a lot of respect for you, EC. What an incredible post.
ReplyDeletePearl
EC, let me add my respect and sympathy to the general chorus above. You are one tough cookie and a deeply sensitive soul at the same time! There is very little I can think of that is as hard as finding yourself angry with or hating someone who is ill or impaired. You can't help but feel you should have handled things with good grace, but we are only human. An unlikable or hurtful person, however much they are in control of the harm they do, sometimes inspires both the worst and best in us - but no one can be 100 percent selfless in such circumstances. Sounds like you did an admirable job in an impossible situation. I hope you can make peace with that. All the best to you, my friend.
ReplyDeletePearl, Two Tigers: Thank you. Respect for herself was one of the things that mum abandoned. And logically I know I did as much as I could, but I am a hard task master and wanted to do more. And Two Tigers I am glad that the ugliness of this post doesn't inspire you to abandon ship.
ReplyDeleteEC, I feel so sad and happy you survived such a hurtful parent! Alcoholism is definitely an awful disease as it sours not only the breath but the temperament. It takes courage to state the truth, that some people make life difficult for themselves and others, and are cruel, which is sadly the last self-defense mechanism of people fighting their weakness and physical helplessness. I challenge anyone to take care of a patient like your late mother with good grace. I prescribe you some listening to Mavis Staples who sings "you are not alone, I want to get through to you" - Lifeline should make that song their hold music.
ReplyDeletethanks for reminding me that I'm not the only one-
ReplyDeleteWarm Aloha from Honolulu
Comfort Spiral
><}}(°>
><}}(°>
<°)}}><
I can barely imagine how hard it's been for you, my mum and dad are still alive and have been nothing but the best. You really are pretty special to go through what you have and still come out the lovely kind thoughtful person that you are. I have to remind myself I'm not invincible too, though through other trials. Sometimes you just want someone else to do the catching and fall yourself, and that's a good thing. And you have some good friends to do just that it seems. x
ReplyDeleteThanks heaps Mitzi, Cloudia and All Consuming. And I chased up Mavis Staples Mitzi - you are right. Wonderful.
ReplyDeleteThanks, EC - that was beautiful, doubts and all. Glorious title! But your mama was rather determinedly evil in her last years, wasn't she? (Won't even discuss the medical system.) The person who could have dealt with her each day with a good grace would be a walking miracle. It sounds like you tried - very hard. And you remember the woman she used to be. That's what makes my eyes leak.
ReplyDeleteNicoS xx