Don't beat yourself up....
Dear Allylee,
You have my utmost sympathy at this time. Everyone on TP who has placed a beloved parent in a Nursing Home will absolutely identify with how you are feeling right now.
Making the decision to put your mother in a Nursing Home is an utterly emotionally devestating step. Actually DOING IT on the day takes incredible courage and is without doubt one of the hardest things you will ever have to do in your life, as you say.
I felt like I was putting my parents in jail/abdicating responsibility/deserting them/admitting failure to cope, etc, etc, ad naseum. I can only tell you how it was for me. You may find some striking similarities in the grieving process of my letting go of caring on one level and setting up new parameters of care later on. I'm sure we are all shocked beyond belief at this stage at the horrible feeling of unreality of it all.
After the 'act', I went home alone loaded with pain and misery - to what? An empty house filled with the memories of happier times and the resonating echoes of yesterday's caring duties....... and then the 'what-if's' and guilt started.
I went through the 'What if AD never happened?' trip and how life would be so wonderful and controlled and so predictably normal - and that lasted for a few hours until I had thoroughly exhausted that tape.
After that, it was 'What if I'd been a better carer/more organised/able to stay up 36 hrs a day/had more day care sorted out/researched better medication/ taken Mum to the bathroom more often/organised more projects for Dad to try and sustain his basic skills' . [All this goes round and round in your head as you sit there alone and you know that you would DO just about anything to turn the clock back 24 hours!] At this point caring 24/7 seems like a heaven sent option......
So while I was barrelling along on the guilt roller coaster, suddenly panic set in with a vengeance..... and I had this awful 'WHAT HAVE I DONE'' feeling. Effectively WITHIN ONE DAY, I had reduced my parents' lives from a full on family home to a couple of suitcases filled with name-tagged clothes, half a dozen framed wall prints and a drawer full of photo albums - AND THIS WAS IRREVOCABLE...!!
This is one of the heart-stopping and paralysing moments when you suddenly realise that life has forever changed and that NOTHING but NOTHING will ever be the same again.
Ally - this is the 'new leg of the journey' which you have identified and which is causing you so much grief - on top of letting go of caring for your Mother on a daily basis. It's the gradual but inexorable removal of daily things like newspapers and discussing TV programmes - of the loss of the ability to go on walks together, hold lucid conversations, eating meals together.
It's an incredibly excrutiating process to slowly dismantle a parent's life piece by piece by removing once familiar objects when they are no longer recognisable - and it can personally tear you apart in the process. It feels like you are personally anihilating them bit by bit until their sum worth is a suitcase of clothes which you give to your best friend to take to a jumble sale because you cannot possibly bear to do it yourself!
I think it helps to adapt your role as a carer and to re-evaluate the ways in which you can care as time goes by - by holding hands and stroking arms when conversation skills fail; brushing hair seems to work wonders as well as gentle physical hugging. It replaces our normal modes of communication and gives great comfort to both the sufferer and the carer.
Altzheimer's is a whole new language by itself and it's one that takes time and dedication to learn, especially the new speech patterns. As your Mother's language ability diminishes you will need to try and understand her steadily diminishing vocabularly. I guess it's like having a child grow up in reverse, as the older the dementia becomes, the less articulate she will become.
You say that you 'stupidly arranged a lunch' for your Mother on the day that she was going into the Nursing Home. Hey, on reflection, all of our rites of passage are marked by ceremonies - birth, christening, engagements, marriage, funerals - and although we may be physically present for all of those, we probably aren't entirely mentally with it for all of them, - BUT they are all celebrations of life in its various forms. In at least 3 of these cases the ceremonies are really for our family and friends to get together and have a great party.
Ally - You gave your Mother the most amazing interim farewell! You gathered together all of your oldest family friends to say goodbye to her from her home to the Nursing Home. OK, your Mother may have been confused, but her friends had a chance to spend some last precious moments with her and to remember her 'at home'. Right now you probably don't realise how utterly brilliant of you it was to think of organising such a wonderful send off. It was a truly grand tribute indeed -
[and not in the way that you are feeling right now]! I wish I'd though of doing this on the day that I took my parents to their Nursing Home.
Losing somebody we love to AD is a double death trip in my opinion. We lose them when they are diagnosed with AD and start to fall prey to this awful memory loss until they haven't a clue who we are or what year it is. And then we lose them when they finally die.
As I've said before, when your loved ones start to lose the ability to make memories on a daily basis for themselves, then we need to step in and make and keep those memories alive on their behalf. Let's celebrate their lives and make every day count. I'm sure it will register somewhere and somehow in their memories too.
Jude