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Réponse de KCBJ
09 mai 2012, 6 h 28

Hi everyone. You know, coping isn't all it's cut out to be. It's been a regular barage of attacks by my mother for the past few years - not days. You cope only to survive to fight another day, but it takes its toll on you. My concentration is toast. I'll hang in there, but I wonder sometimes what I'll be like after this is over.

But I take full responsibility cuz I let it happen. If I had this to do again, I'd run faster than the wind. :-)

My mother's health has been really going downhill that past couple of weeks. She still has me but, as our family doctor says, who will be there for you -- besides the dogs. (Will have to teach them how to get a job. :-))

To those of you who are mothers, Happy early Mother's Day!! I wish you all a happy happy day.
 
Réponse de NatR
09 mai 2012, 14 h 55

Dear KCBJ,

So glad you posted your thoughts.  When you are taking hits from someone who depends on you...it becomes a battering ram.  It begins to feel personal after awhile...even though...as many have mentioned here, dementia and the sometimes verbal and physical attacks that are directed at the front line person..in this case you....start to feel like they are penetrating!

First thing you did was write your thoughts.  Good girl.  Second thing you have to do is remind yourself that your mom needs you, and that you have decided this is what you need to do for her, to make sure she is getting the best care.

When you become a victim...then the purpose is lost.

I just returned from visiting my mom for a week.  I am still reeling from so many emotions.  I know that I couldnt do what you do.  I would have broken by now.
My mom bit at me when I tried to brush her teeth, wash her face or do anything minimal to assist her.  She got angry with me...and I was feeling so much guilt already...and pain...from not being at her side for the past two years plus.

She chose to stay in a locale that was familiar to her, regardless that if she needed care at the end...I would not be able to be there for her.

I KNOW that you are doing what you feel is right.  That in the end you will be able to look back and say...I did what was right, I did it for my mom, I did it for me...and I am a survivor.  Please be prepared for an overwhelming rush of emotions and a need for support after your caregiving duties are no longer needed.  I have a feeling that you will still be hard on yourself.

I want you to think seriously about the importance you are...as a person, as a daughter, as a friend, and just as a human being.

We often get lost in who we are...I am feeling that lately. I dont know where to fit in, and some days...its such a blur and I just want to get off the merry go round...but yet I dont...you know what I mean?

I am thinking about my Mom on Mothers day.  I left her a card, asked the staff to open it on the day.  My sister will send flowers...she is great at taking care of all the details as she has the POA and has done a fine job of keeping on top of special dates, calls to facility etc.

But..having just left my mom in an environment where workers are around the clock, not everyone seems to get the messages that I passed through the nurse....I KNOW that your committment to protect and give daily care...is going to be the one thing you gave her...that you know matters the most.  Personal caring care....is only done by the best of the best....and dont get me wrong...I know some amazing caregivers in my circle of life....I have a hard time letting go to those others..but I also feel my limits...and know my range cannot be 24/7

You will get through this.  It will add to you as a person.  The job you do now will come to an end...but afterward, you will have so much understanding, compassion and caring to add to the lives you effect.

I hope you will hold that thought tight to you today....and know you are honouring your Mom...the best way you can.  We all do what we can, we all do it differently but we all feel things..the same....deeply, to the heart...

My heart goes out to you today. 
Stay in touch....write when you feel the need...we see, we read, we all struggle with things too....and together...we are better...for those who need us.
Thank you for sharing..
Best wishes,
NatR 
 
Réponse de Cath1
10 mai 2012, 16 h 12

Hi KCBJ:

You are right when you say coping is not all it's cracked up to be and if you are constantly put in a circumstance where you feel powerless to change anything and instead only make do, it creates an enormous strain on you that should not be carried alone.

Sometimes when I read your messages I think you are being so valiant to continue making such sacrifices for your Mom's sake, but I also, like your doctor, wonder when you need someone who will that be? You need someone now and I hope even though our support is limited to online exchanges that you genuinely feel it and know we care.

Can you begin slowly to extricate yourself from the situation in small ways by allowing yourself and your needs to be a priority once a week? Could you afford to hire someone even for a couple of hours weekly on an evening to escape your Mom's demands and her verbal assaults so that you could go to a movie or visit a park with your dogs and just read a book in peace? Does music calm your Mom's moods? I know music really had a positive impact on my Mom when she was upset and it helped to distract her and improve her temperment on more than one occasion.

I hope you will consider these type of options to help you do more than cope, but to feel a little more hope and happiness than you now experience because the way you're living is so painful. Life is not meant to be an existence where we endure daily suffering without meaningful supports. 

Can you reach out regularly to someone and ask for help?

This Mother's Day I will be thinking of you and hoping you know how very much you have given to your Mom and I hope you will soon have a chance to be on the receiving end of kindness and care!:)

Cath1 (formerly VHcath)

 
 
Réponse de KCBJ
11 mai 2012, 5 h 29

Thank you NatR and Cath1. As I read your messages, I'm a flood of tears. Escape Cath1? Which is what it would be! There is no escape. I sneak away every couple of months in the afternoon for a couple of hours to go to a movie with another coworker. After the movie, I'm back in the office.

Friends have tried to take me out for dinner just for a couple of hours, but something always happens. Once a year, I'm allowed to go on the Winnipeg Humane Society Paws in Motion Walk. She has it timed enough that by the time we just hit the finish, my cell phone is ringing that something has happened. Besides going to work and grocery shopping, that's it. And she's got that timed as well.

I'm just feeling down these past few weeks and can't seem to shake it. I hate like heck having to tell people my constant horror stories, but as I tell people, sometimes calm comes from talking to people you don't really know. But I feel so selfish.

I truly and utterly appreciate being able to 'talk' to you. If nothing else, some of you may feel you don't have it so bad afterall. :-) My mother's pain is increasing and she can barely walk now, though she does. The medication puts her out, but she wakes in pain. Phone conversations when I'm at work are always the same -- I can't walk, I'm in pain, I wish I was dead, Only the dogs care. So I don't really escape at work either except to get out of the house.

NatR -- I'm so sorry about your recent visit with your mother, but at least you get to go home and you have siblings and likely a family to ease some of the pain you feel after your visits. I do totally understand what you're saying. Next time, if you're feeling down after one of your visits, think of me. You'll feel much better. :-)

I was reading a story about the Deer Lodge personal care facility this morning. The story talked abou the neglect in one of the wings, but now the manager is no longer there. But, they have other workers that apparently went along with whatever was happening. So, that being said, how can I put her in a hospital environment? Besides, she'd be calling every 1/2 hour on the hour (as she did for 2 years before she moved in with me) and that's every single day.

No matter. I have my dogs and my gazzebo. The dogs keep me grounded and the gazzebo lets me sit outside for a while -- so does my smoking (otherwise there would be no reason for me to go outside). Thank goodness I don't drink anymore. Oy!!

Thank you guys!! You may be hearing from me a bit more for a little while, at least until I can shake this depression off. Every so often it sneaks up on me.

You have no idea of how much I appreciate reading your messages of support and I hug you both (virtually though it is).

OK, I'm in full crying mode now. I'll say goodnight and will write soon. Take care and thank you again!!
 
Réponse de Cath1
11 mai 2012, 11 h 37

Hey KCBJ: 

I'm so happy you wrote to us again, not happy of course to hear that you're feeling depressed, but so very proud of you for breaking out of your prison of isolation to reach out - even virtually! Please don't feel selfish because that is totally unwarranted, unlike your tears. I would fill oceans if I were in your position, and again, I'm glad that you can cry which is a very healthy release of emotions!

I know there are issues with care in some long term care homes, and the problems extends beyond Ontario. Quality care is not always the reality in some places, but there are many people and groups trying hard to raise awareness of the inadequacies and working to change them and to bring accountability to bear. Some good facilities are out there and if things don't improve in your home life with your Mom you may have to accept that you have no other choice but to consider long term care for your Mom. Your involvement with staff at the Home, good communication and your presence during frequent visits would help ensure that your Mom receives good care. Family involvement can make that difference.

Your own mental health and well-being may not leave you any other alternative. Think about it, and please tell your doctor the truth of how you are feeling because I bet s/he has no idea of how much stress you are dealing with daily. The doctor could at the very least ensure that you get some home care help for your Mom. You really need to take charge of the situation and not allow your Mom to direct the course of action you take.
If you think about it, your Mom is not the rational person in the circumstance, so you must remember that she does not have the control over you that you think. You must try to separate her illness and her behaviour from your perception of her as your Mom, the woman who was once different with you before illness held hostage much of her pleasant personality and replaced it with emotional disturbance. It is not your fault. You cannot change your Mom's illness no matter how much time you invest in caring for your Mom.

These issues will not resolve by themselves, but you are actively making a change by connecting with us here which to me is a very positive and hopeful sign for you and your future! Please write back more often over this dark and depressing time you are experiencing and no we do care about you and what is happening in your life!

I am off to work this morning, but I will check in later today and over the weekend. I'm only as far away as an email alert!:-) I'll be keeping you in my heart KCJB, and I'm sending you many virtual hugs to comfort you until the next time we talk. 

Cath1 Hugs x many:) xo 
 
Réponse de NatR
11 mai 2012, 17 h 33

Dear KCBJ,

Cath1 has given you some amazing suggestions...I do hope you try one or two.
I am sorry I didnt read this earlier today.  I am sad you are crying, but also glad that the tears show we have made a connection and that you do hear us responding to you.

I have cried those same tears when a friend, like Cath1 or someone else has heard my cry of pain or fear...and has answered me.

We arent perfect, we dont have all the answers, but somewhere in there, we are just like you...have experienced the demands of caregiving.

You mentioned the outing that you manage to get on..to escape from the house.  That your cell phone rings if you are two minutes late returning.  That sounds like a very controlling person ...not just dementia, but your mom is being very abusive to you as I know Cath1 has said before...

Like Cath1 I am concerned for your mental health.  Even tho I have allergies to animals I know how much they can calm and bring comfort.  Glad you have your dogs.

Keep on writing...keep on reaching out .. your voice is heard, my heart goes out to you.  Caregiving at its best is exhausting, and at its worst can bring you down emotionally and physically.  

The conversation we have going about the concern for care in LTC placement....whether short term or long term...(and have you considered trying that? just a weekend placement???)

The time has come....and even though your mom is diminishing in her abilities and has more pain and discomfort is only going to complicate the relationship you have...which is already pretty tough on you.

As much as I hated to leave my mom last week in a distant province, I have no choice.  I cannot bring her home and have her rant and rail at me in her dementia.  I already have a full time caregiving job within the family.

I have cried my tears of sadness and regret.  I have given all I can.  I remember my mom and the times she extended herself to me...financially, with offers to help, clean, bake, look after the kids...wash my clothes...with added bleach..(not good)...but her heart was in the right place.

You have decided that you need to bite the bullet and that your mom deserves no less than your continued care as her "shackled nurse".  That isnt healthy...and I am sure others might say the same.

There are many stories out there...and we are all different...I guess what I really want to say...is that you are AS important as your Mom is...no more, no less.

You are her child, but you are not her 24 hour slave and servant to take abuse and be controlled.

I strongly suggest that you find a counsellor, talk to your doctor, your moms dr. or whomever you can find....to gain support and understand what is really going on here.

You and I are close in age.  I am afraid I couldnt do it...not even with dogs to comfort me...You are entitled to time for you..time to refresh, time to feel human, to feel friendship...to live!

Keep in touch...know we care...and if we are delayed in writing, know we did read your msg and we will respond.

Thinking of you today....and hoping you take care of you....it is now time...for you.
Best wishes,
NatR 
 
Réponse de KCBJ
14 mai 2012, 5 h 49

Hi. I'm still around and kicking. :-) What keeps me going is the strength my mother passed on to me. I do get down every so often but now I have you to get me thru it and that wonderful. That's more than I had before. You don't know how much that means to me. I've given my head a shake and I'm ready to dig in again.

I am wondering how you both are doing. 
 
Réponse de NatR
14 mai 2012, 10 h 59

Good morning KCBJ,
Thank you for your note...glad you are still around...and kicking.  I think of you at least once each day..and its nice to have you "check in".  The strong ethics you have to care for your mom - despite all odds..is admirable.

I am reading a book right now...that you may find inspiring also...Dignifying Dementia by Elizabeth Tierney.  She cared for her husband for many years, and her story is one we can all identify with.

I am coping okay..it was Mother's Day this weekend.  I though of my mom, I know I have done all that I could when I visited, I know that she cannot understand now if we are with her or not...but I hope she knows I think of her daily and wish I was closer.  

I have enough to keep me busy..I care for a family member at home..not a full time job, but its part time and I am on call...so it sometimes feels like I am attached to the job even when I am away...but like you...its a call from my heart that I cannot let go of.

I do wish you a great day.  I have been awake most of the night...my family member was awake most of the night, therefore so was I...but I had to write you first, before I even got to the coffee pot...and allow my family member to sleep now that she finally got there....

I certainly identify with you...and I admire you ....your job is not easy...but it will always be something you can remember doing...with heart.

Keep writing notes...on your good days and your bad....and we will all carry each other along.
Sending wishes to Cath1 as well, and the moderator of this website who also give of themselves wholeheartedly.
NatR 
 
Réponse de NatR
24 mai 2012, 13 h 51

Good Morning KCBJ,

How are things going with you and your mom?
Are you still managing to get a bit of personal time with your dogs?  

How is your mom doing this week?

Just wanted to say that you are being thought of.

Drop a line when you have time...and take care of you...
Remember, when they drop the oxygen masks in a plane you have to put Yours on first before assisting another...so put yourself first...at least for an hour today:)
Best wishes,
NatR 
 
Réponse de KCBJ
26 mai 2012, 4 h 14

Hi Nat. Haven't been online much but it is so kind of you to think of me. My mother took a fall last thurs eve, so ended up staying at home on the friday. Otherwise, everything is the same.

Did you have a good long weekend. It's darn well chilly here and I hear it will continue chilly and wet until next week.


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