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Réponse de NatR
12 juil. 2015, 14 h 09

Dear Razz,

i saw saw your note yesterday but couldn't focus my thoughts to reply.
but here I am, sending you a note back

everything you said resonates with me as a caregiver, both for family and retired from working in the long term care scenario

the guilt, the feeling of never being able to do enough, or do it all.  The concern for your loved one, the knowledge that even though you can't fix everything - no one else seems to have it all wrapped up in a nice package with every need, every detail included.

that is the hard reality for caregivers..overwhelmed with fatigue, guilt and such exhaustion of the body and soul.

i know how you are feeling for many reasons,  I have seen it from the family side, from the facility side.
i know the ball gets dropped, the care isn't 120% like we want to see it done, or do it ourselves.

the reality is that waiting happens, there is nothing we can do about the small details.  

The big bonus you have is that you mom is cared for around the clock, 24/7, that she is never left alone ( people pass by or enter her room for various reasons....and that's the best we can hope for...those eyes and ears of all workers passing messages to each other.

so many times, the gal in laundry gave us persoral support workers  - a heads up that someone was sick, needed toileting, was sliding out of bed or attempting to leave bed Or wheelchair.

so you see, even for the staff who need more support, the same feeling happens for them.

 
 
Réponse de NatR
12 juil. 2015, 14 h 21

Part 2!

i posted the first part, fearful I would lose all my typing...lol

so Razz, I hear you, and I also feel the same pain. My am retired and not working, living on a pension, and no longer caregiving for my loved one....
but the thoughts are there 24/7.  
Who has her today?
Did she eat?
dI'd she rage ?
did anyone know she was frustrated?  
Did her worker call in sick, and did an unfamilitary worker get called in...?
That complicates things for my loved one. 

I no no longer care for her around the clock ( which I did for almost 5 yrs...sleeping near her, waking with her, addressing all her needs, speaking for her etc)

so, I just say all this as I want to encourage you that we - I - understand your stress.

i want to close by saying....rest when you need to.
try and do one thing each day that is Just for you! Watch a favourite show, read, walk, visit with friends, vent if you need to, but Know you are not alone, that your mom is in a place that is watching over her and try to let go of the worry....just for 1 hr a day.

no one should feel totally drained and empty because of caregiving but it happens all the time.

i even vent saw nursing students who came to work in nursing homes for summer jobs who quit, who went home crying, who were overwhelmed by the enormity of the job of caregiving.

sending you hugs and I hope you know I said all this to let you know you are surrounded by people who "get it" and understand.   

Your mom is lucky to have you.
you are being the best daughter.  Not everyone can or is close enough to do what you are doing.

I want you to feel comforted and supported.  I hope I helped in a small way.
once a caregiver, always a caregiver 

hugs from me to you.
(PS I am going to an air-conditioned theatre with a grandchild and his mom to see the second Minion movie - hoping the dark theatre will be cool, and the sound will be loud enough to drown out my ever present loop in my head - that keeps alerting me to make sure my loved one is safe ano happy).  We deserve moments that matter too;) 
natR xx
 
 
Réponse de JennJilks
12 juil. 2015, 14 h 34

Ah, Razz. What a time it is, isn't it?

You can only do what you can do. This is true for family members at home, too. 
You wrote: "There is also now concern about "pressure" sores and they are working to prevent them from developing but she now has one on her back bone.  Sigh.   All part of not being mobile and I know that there is not enough staff to cover everything. "

 I think pressure sores are inevitable. I don't know if it is any comfort, but my client, with ALS, who has a special mattress, was able to roll over a lot, still has pressure sores. I think some people are simply susceptible to them. 

Don't beat yourself up, or the staff, about finding fault or worrying about advocating.
Listen to Nat, she's a good person. All you hear in the media is the blaming, the 'what ifs' and the abuse that occurs.

Seldom do we hear of those, like yourself, who spend each day worrying, advocating and creating a circle of care.
My client's adult son is amazing -I think age 50s or early 60s). How many men could you find that would clean up and change their dad's Depends? All we read about is blaming and finding fault. He also manages his mom, who has dementia. 

You are very positive, and that is important for your mom. We've learned much about attitudes with people hwo are ill. It helps to be upbeat. I take silly iPad photos with my hubby at the doctor's appointments. 

You know mom is in the right place right now. You know you succeeded. This aging in place stuff can be such crap! Some of our failing seniors belong in hospital and/or long-term care. It's just the way it is. They get to the front of the LTC line, when in hospital. This is good for your mom.
Take it easy on yourself. You are just a human being. Death and dying is a natural part of life. There is little we can do to change this! If it helps, this is the PPS evaluation the pros use. It might give you an idea of what is 'normal', it helped me with my late father.

Assessment tools & palliative care clients 
 
Réponse de NatR
12 juil. 2015, 14 h 52

Jenn

thanks for adding your words of wisdom to Razz 
 I love that selfie you shared!
i know you are coping with the same stress of caregiving and worry. ~ and your words help
hugs and stay cool everyone 
NatR 
  
 
Réponse de Razz
24 juil. 2015, 22 h 09

Yesterday I cried.  In fact I cried most of the day.  Not about any thing specific really, just everything in general.  We now have a new kind of "reality" and I know that I need to grieve the smaller losses and make the best of what we have.  

Actually we were very blessed last week.  Mom wasn't "listed" for a bed until late Monday July 13th (all her information and requests are sent to what is called the "Bed Hub" and from there they match patients to the best facility option for them).   Tues. July 14th I had left a message with the Social Worker at one of the Long Term Centers we were hoping to be place in to arrange for a tour.  Late that afternoon she returned my call and said not only would she be happy to arrange a tour but that in fact they had just recieved Mom's information and it so happened that they had a bed open!!!  This type of thing just "doesn't happen"..... someone definitely heard my prayers.  I met with her early Wed. morning and voila' Mom was moved into her new space on Friday July 17th.   Basically she was placed within 24 hours!!!   

I should be doing the "Happy Dance" right?  This is exactly what we'd been hoping for and it exceeded out expectations in many ways.  And yet I cry.  

This is such a major move in terms of "life style" , indepedance and privacy.  When she was first brought in to her new room whe wanted to know why she was there (we'd already had a couple of conversations discussing a the move to a place that would make things so much easier for her and everyone).  When I told her "this is your new home Mom" she made a foul face and said "Oh... well it doesn't make any difference to me anyways".  I think that day she was able to add 2 and 2 together but she has since lost that understanding.  

Since she had been in a "room" of some kind of since June 10th I thought she might enjoy a bit of a tour of her surroundings.  Nope.  After 15 mins. she wanted to go back to her room.  Again she told me it didn't make any difference anyways.  Sad.  It really is a lovely newer facility with high ceilings and lots of natural lighting.   

This week I purposedly made a point of not visiting every day and the times of day that I visit varies as well.  I want her to settle into the routine of the place and I also don't want to create a situation where my presence is "assumed" by all.  Unfortunately during the last 2 visits I have made she's had a "bathroom mishap" and it's so hard to see her in that kind of situation.  She is urine incontement but until recently was bowel contenent.  That has now changed since the move.  The aides are doing all they can to change things promptly and are doing it with care and compassion (and place her on the toilet as soon as they can when she requests it).  But I cry .... it breaks my heart to see it all come down to this.  She did have to sit in a soiled diaper for about 1/2 hr. before they could get to her to change her and then put her down for her nap.  Is she aware of this?  Both times they took her into the bathroom to clean her up and had a heck of a time keeping her from pulling off her diaper like it was a pair of pants and wanting to squat on th toilet.   

The dietician has tried to expand the things she will eat and is adding protein powder to everything on the off chance that she may eat it.  It's a no go for the most part - she doesn't eat except for the odd bite now and then and only if it's sweet.  Talking with the aides yesterday and listening to what happens to her after she has had her Ensure we're beginning to think that that is the thing that is causing the bowel upset.  This did happen with her once before a couple of years ago when she was also not eating much.  She stopped drinking the Ensure because she said it gave her a tummy ache and sometimes the runs.  I had forgotten about that until yesterday.  

Yesterday I left her dozing off for her nap.  She seemed pefectly happy to be doing that and I can honestly say that so far she has not complained about anything.  The staff adore her as she's so agreeable and follows their requests without any fuss (except that toilet issue).  The staff that I have met so far have been very friendly and also quite open to suggestions I had on items that she may eat and drink (at this point can be found in the resident's fridge).  Yet I cried once I left. 

I guess it's partly because so much of what was her is no longer there.  So many time over the past couple of weeks I was sure she was on her way out and that we'd be getting a phone call in the middle of the night.  Yet she still hangs on ..... a tough ol'bird ..... she may just outlive all of us.  I try not to let the surroundings and the other residents effect me and I talk with them when I see them in the hall as well  (some don't make any sense at all but what the hey).  I'm trying to see the positives in this ... and I know intellectually there are many.  Emotionally ... right now.... it's really, really hard.  

And it makes me cry. 

Razz  
 
Réponse de Razz
25 juil. 2015, 20 h 15

LAXATIVES!!  Laxatives!!  Yell .... during my visit to day we once again had a "bowel problem" and I had to summon the nurses to come and help me.  Poor Mom.... it was such a mess.   We got her cleaned up and I did her hair so she was feeling better and it was time for lunch.  They have been taking her to the dinning room so that's where I took her.  On our way we pass the nursing station so I asked the nurse there if anyone had mentioned that Mom was still having trouble with her bowels and I was wondering if anything had been given her to help slow that down.  Well the nurse wanted to know if Mom was on a laxative to which I told her I didn't think so since she wasn't eating any real solids. She checked to make sure and guess what .... there was a standing order for her to have a laxative twice a day ... one in the morning and one at night!!  I know that seniors often have the opposite problem because they don't move around much and they don't eat properly - I get that.  But to have it as "standard procedure" is just plain nuts!!  Yell    I can't believe that no one checked on that up until now since the problem has been ongoing for a few days now.  I'm not even sure if it's the doctor I need to talk to or just the Head Nurse.  Common sense would have been to wait and see if she was having a problem in the first place.  Now she (and to some degree I) have had to go through this rather uncomfortable situation for what may have been no reason.  

I took a "me" day yesterday and now today I'm left feeling a bit guilty because if I'd have gone yesterday I might have saved us at least one day of grief..... or not.  

The day before yesterday I cried.  Today I'm frustrated and grinding my back teeth.  This is definitely going to be a challenging period in my life and one that I feel totally unprepared for.  I must not give in to these, at time overwhelming, feelings as I need to learn to "deal" with what is and let go of what I wish it was.  

Mom always used to say that "getting old is the pits" ...... she was close ..... "getting old is the sh#ts!".    

Razz 

 
 
Réponse de NatR
25 juil. 2015, 20 h 35

oh dear Razz,

It is Murphy's law that if anything is going to go wrong it will...and especially when you tried to take a day off...for you.
Dont hold that guilt to you.  I am just glad to hear that you did find out the problem.  Sometimes it is interesting just how these problems get aired or unearthed.  I would say that the Nurse for sure you need to talk to  - and maybe to the Dr. as well.  I dont know for sure and perhaps someone else can tell you that.

Your poor Mom.
If they do that to me I will definitely be squawking.
I think it is cruel and unusual punishment to give her laxatives twice a day?  In my  work experience it was a 5 day rule.  If you had gone 5 days without a movement, you got the laxative.  Or if it was your bathday you got laxative a few hrs before your bath.  Which makes sense - if your body cooperates.  We all know that it is an iffy thing - expecting the body to do what we think it should.

I had not read your earlier note about your mom getting a bed in a nursing home.  I hear you - I know how painful it is to deal with that fact, and yet, so many people need that kind of support and need the family member in a safe place.  It isnt easy at all to deal with.

I also struggle daily with my worries, my concerns and my wishes for my loved one.  I dont think it will ever change.  I have to fight with myself all day long, not to phone the number and ask how things are...because if i do I inevitably end up going in to visit - just because of what I hear on the other end.  Its not a guilt trip but it is just the way things are said.  If you want to come - I know  she will be happy to see you...she is always happy to see you.

So I could camp under my loved ones bed - and always be there for her - but that wouldnt be good for me.

I know a bit how you feel Razz.

All I can say is you write everything out so we can "get it"  And you wonder why the people who are on the scene arent getting it!   This is crazy, giving laxatives like chocolate bars...and I understand about the waiting in soiled clotrhing and briefs.  Oh how I know.

Keep writing, it helps.
Keep taking care of you...rest when you feel the need, close off the communication if you need a few hours of silence.  You will be no good to anyone and not even yourself - if you dont take small breaks.

I admire everything you are doing.  You are a strong and caring and loving person.
Carry on - and thanks for sharing your story.
Best wishes,
NatR 
 
Réponse de Nouce
25 juil. 2015, 21 h 00

Love to all of us who are struggling with the laxative thing. A jewel in our crown for each round.

I don't mean to be funny. This is a regular issue with my partner.

Nouce 
 
Réponse de Razz
25 juil. 2015, 23 h 56

OH (((Nouce))) .... I didn't think for a minute you were trying to be funny.  I know that those with limited mobility often end up constipated and a laxative is certainly appropriate.  For Mom at this point is isn't what she needs.  That could always change.  

So sad when you think about it ....... that your quality of life can be determined by this single thing.  

Having young children in diapers is part of the their journey of life.  How cruel it feels to have that come to be at the end of someones's journey as well.  I know today that my mother felt ashamed and unhappy with herself when I had to say "yes" when she asked if she'd soiled herself.  This is a situation that no one ever wants to be in.  The elderly loose so many things as they age ...... and to have their bodies betray them as well must be so disheartening.  

Razz  
 
Réponse de KathCull_admin
31 juil. 2015, 18 h 33

Hello everyone,
My mother used to say, 'the golden years are not always so golden'.  It can be so hard to put away those overwhelming feelings Razz. You can think they are subdued and under control and then unexpectedly they jump out - kind of like:  

Have things improved in any way for your mother - and you?  Nouce I agree with your 'love all around' for those supporting people with bowel concerns - something we so take for granted when well can be overwhelming when trying to keep things in balance.
NatR you too are a strong, caring person - just remember that:)

Take care all
Katherine 


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