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Réponse de KCBJ
11 juin 2013, 3 h 45

Hi Nat. Just thought I'd see how you're doing.
 
07 févr. 2014, 19 h 53

Hello. You could try this: out loud, or in your mind, tell yourself in your mother's words and, if you can remember her voice, in her voice:

"It's okay honey. You'll be okay. I love you. We're together. Nothing can change that."

 
 
07 févr. 2014, 20 h 05

Hi Aphasia Sufferer's daughter,

That is a beautiful piece of advice. I will take it to heart. I bet Lilbear would like to hear this too. I'm going to point her to your message.

Welcome to Virtual Hospice! We're glad that you're here. Can you tell us a bit more about yourself? How did you find us?

Colleen
 
07 févr. 2014, 20 h 18

My mother just died of complications arising from Alzheimers. She had Aphasia too. I am devastated. When I was a younger adult (when my mother was alive oddly), I found this way of comforting myself. I told myself I was being my own mother. But I never stopped. So now it's a practice of mine when faced with something entirely traumatic. My mother's death wasn't peaceful. It was a marathon. I'm shocked and I found this site because, 16 hours before my mother died, when she was in distress, my sister, a doctor, found another doctor at the Temmy Letner centre who gave her advice over the phone. He came the next day to declare death. I am not a medical person. I had the decision about palliative care to make but  absolutely no prep about the last hours of dying. I have never seen a person die before. It was just me, my sister and once every three or so hours, a night nurse in my mother's senior retirement home. My father didn't come. He yelled at me the next day and rebuked me for crying when I spoke to a kind cousin on the phone. I visited my mother for long hours (never less than 12 hours, never less than twice a week). I had her to my home over Christmas without help for 8 days and nights. She kicked me and punched me and insulted me. I loved her anyway, but I was definitely in shock from having been assaulted. In the last couple of days, she called me by my father's name and my sister's name. I loved her anyway. Other people say: She wasn't herself. Not true. She was herself. it's just that what we call a "self" comes and goes - it isn't a fixed thing. we change. At the end of an 11 year battle with aphasia and alzheimers there wasn't a lot of self left. She knew who my sister was and in her last few moments, she put my hand aside and grasped my sister's necklace and pulled my sister to her. I am decimated. So I can hear her voice saying It's okay honey. And I know that it will be alright, just not for a long time and in the meantime, I'm in the wringer of griefl. 
 
Réponse de NatR
08 févr. 2014, 3 h 01

Dear Aphasia sufferers daughter,

my condolences to you on the deep loss of your mother.
the description you wrote about your moms behaviour is pretty much the way it is for dementia sufferers.  It was a good way to handle her, loving her, caring for her, despite the difficult behaviours and actions.

11years is a long time to caregive.  You have my sympathy as you now pick up up the pieces of your life.  I know very well how you are feeling...the loss is so painful, the shock of no longer having your mom there, what comes next, how to move forward

you loved your mom through it all.  You are a good daughter.  It's time for you to slowly but surely work through this time, and know that you did all you could.  Don't feel guilty  ( but you will) try not to worry ( but you will) and know that you have a group of caring friends here at the forum to listen and understand ;) as you work through this difficult loss.

right now it's really  tough, and I hope that you can be comforted by the thought that your mom is at peace,that she no longer struggles to be understood, or is lost or frightened, you did a great job looking after your mom.

my thoughts to you this evening,
sincereky,
NatR
 
 
08 févr. 2014, 5 h 21

ty
 
Réponse de KCBJ
08 févr. 2014, 6 h 36

Hi Aphasia Sufferer's Daughter. First, my sincerest condolences on your loss. I hope your father will eventually change from the anger of his wife's passing because I'm sure that's what it likely is and you will be able to comfort each other. And NatR and others are wonderous people who will be able help you thru this.


My mother will be 99 come July. She has been with me for a little over 20 yrs now and has had dementia for almost as long, among other illnesses. She has what I call the 'nasty side' of it. My mother is quite verbally abusive pretty much on a daily basis and has recently taken a couple of swings at me. Know that you were and are not alone.


I don't know what your mother was like prior to the onset of her difficulty. I'm sure she was loving and cared for you and your sister both deeply. Sometimes I guess the wires get crossed in a person's brain. They hear and see strange things, and worse, ugly things start sprouting out of their mouths. I like to think of it as the brain has separated from the mouth.


I know full well that the ugly things that came out were hurtful and you cried. But she is at rest now. The pain and confusion are gone. You will recover and remember the good things. The bad will slowly fade. And, you have family who will stand by you.


Take care.


Barb
 
08 févr. 2014, 13 h 20

Ty Barb
Not everyone has a loving family who will stand by them. I loved and stood by my mother. My kids are in universities in two different cities. They stood by me and my parents at Christmas, during my father's birthday a week before mymother died and at the funeral. They have to be at school plugging away in order to keep their own lives on track:  So I am quite alone with this. I went to church on Wednesday and will go again tomorrow. I was to take a course at university this winter but think I willl have to withdraw as I dont' hink I can handle an intensive indepdendent study and the loneliness of that while grieving. I will likely go to the doctor for five days of sleeping pills so that I can sleep through the nigh: I don't take medications because I am quite healthy, but this might help in the short run. t and will go to an art class on Wednesday night and try to walk my dog each day. next week I may drive to my mother's city and visit an old friend - so I will feel less crazed and anxious.  While all of this was happening with my mother, I had a new job which turned out to be highly pressured: so I just worked and visited my mom and drove 20,000 km's between home work and mymom's work - it was a short term contract and at the end of it I didn't every want to work there again and I am sure that they didn't want me. Heartbreaking as I had worked towards getting a job for two years - just terrible timing for me. I was living through a "perfect storm".

You're right about memories. I am hoping that it is the shock of her death that has put the awful memories in the foreground and that memories of her smiling and saying nice things will replace them. I hope that happens fast.

If you're planning on having your mom pass at home, then you really really need to have your palliative doctor, nurse, meds, oxygen and PSW all ready to go. My mom was up and down so much in the last month that we couldn't figure out whether she was getting worse or better - we weren't ready with a team to support her and therefore us.  So the fall out is harm to me.
 
Réponse de KCBJ
08 févr. 2014, 16 h 36

Hi. You're absolutely right, not everyone has a supportive family. You see, I'm all alone. No family. But I do have my now 4 dogs. Without them I would have been...


You have the group here that know what you're going through and have been very helpful to me and my plight which to me is neverending. Use them! Talk to them! Talk to your sister. I'm sure she understands what you're going through since she was there with you. What about friends? Do you have the understanding supportive type? Don't overlook your dog either. They are fantastic listeners and know you're going through a rough patch.


Taking the dogs out to the dog park has been helpful - mentally. I enjoy watching them running around and it gives me a chance to clear my head and refocus.


I have a stressful job as well. At least one that requires me to write creatively, sometimes on short notice, and come up with wonderous solutions when all I want to do is escape. Grab the dogs and drive -- anywhere the car wants to go. Maybe take a weekend off and just go (with the dog of course). Get off the main highways and check out the countryside. Explore!


As for my situation, I have no intention whatsoever of her dying at home. That's all I need!I'm sort of between a rock and hard place. At her age, the change will definitely kill her. I don't need anymore guilt than I already have. Staying with me, the situation will probably kill me. But then, at least I'm insured. :-)


I don't know if you dad lives close by but maybe pay him a visit. His partner, your mother passed. I'm sure he's wondering what to do with himself as well. Maybe, together, you can each heal yourselves with the good memories.


Please remember to visit this site often and tell the group what you're feeling. Having that release can be very satisfying. Just let it out. They don't judge. Also read some of the other posts. Can't remember what mine is called, think it's something like 'stressed and distressed'.


Take care.


Barb
 
08 févr. 2014, 18 h 44

Hi Barb
Yes I do find that taking my dog out for long walks is very helpful and I do have a couple of good friends in other cities  - I plan to visit one this week.
I am very happy to have found this site as I am doing exactly what you say - reading other posts etc.

We also faced the issue of moving my mom back home with my dad as he wanted that and as she really stopped benefitting from the socialization at the seniors residence wtihin three months of arriving there. As well the PSW staff there were not consistently good enough; niether was nursing. We were also concerned that the move might kill her. 

My father was not capable of directing PSW staff- he hung around too much and he let all the helpers we had hired go - the cleaning lady (my mom had had her for years - so a big loss of socializiation), a PSW, two workers I hired to visit her (an occupational therapist new graduate and her teacher aunt). So he was my mother and his own worst enemy. As well their apartment was at the top of a flight of stairs so we knew that if she went back there, she would very soon not be able to get up and down the stairs or even work a chair lift successfullly if my dad had one put in. Just exasperating trying to keep her out of a nursing home where she would likely die of the shock of being there. If she had become completely demented we might have been able to handle it - that she wouldn't have known where she was... but that never happened.

4 dogs... wow   

My dog visited my mom with me - seniors' residences are homes so animals are allowed. He ministered to all the seniors there - and the staff. They loved him and looked forward to him coming as much as to my arrival. One night, my mom let him stay on her bed and he did (he never sleeps on beds - doesn't like it - likes the cool floor). She put her hand on his fur and left it there all night.She grabbed his eye, his nose and his upper lip with her sharp nails once when she was angrily striking out at everything. He sat perfectly still and looked at her until I had time to remove her hand gently. Forgiveness and  understanding from a dog.

Talking to my sister. Not going to happen. She's aggressive, dominant, competitive and the centre of her universe. Not kind. not gentle. Has a bullshit answer for everything.  Getting the oxygen and meds and admnistering them while my mom was dying was heroic and good and she fulfilled her calling doing that. She left things to the last minute and had the medical knowledge to know better.  I can be grateful for what she did at the last minute anyway. for my mum's sake. That's probably enough.

I have always said "I can't afford to want anything my sister or father have."  Their addiction to power and to competitive nasty behaviour costs me too much. I have a duty to my father that I will fulfill, but not the same duty that I had to my mother. It's not that I don't love him but there is a limit to the love an abusive person can claim or at least a limit to the love I will give.

My mother has passed away and I am free. I will be going away; possibly for a long time if I can find a way to rent my house and cover my expenses. i would like to have a little enjoyment and some challenges while I'm still competent enough to do that.


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