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Help - I may lose my mind as the only caretaker for my 93 yr. old mother 
Started by Razz
23 Mar 2015, 12:20 AM

Without going into all that's gone on between mother and I; I'll just state that my our relationship while growing up was very one sided and demoralizing.  It wasn't until after a fall and they discovered the signs of multiple TIAs that her personality mellowed quite a bit.  I am truly grateful for that blessings as up until then I could never ever do anything right in her eyes.   You get the idea.  

Currently my mother lives in a "lodge" where the only services that she recieves are 3 meals a day and housekeeping one a week.  As long as they are capable of getting to their meals and do not show signs of needing more care they are happy to have her.  She and I are happy that she's there as she's allowed to smoke in her suite - and smoke she does.  She can easily smoke up to 2 pkgs. of cigarettes a day!!!     

She has some mobility issues because of a series of TIA's.  She has moderate COPD but the doctor is not putting her on oxygen and we're both concerned that she'd blow herself up.   Why ..... because she has dementia .... and since the death of my brother it's getting worse.   I keep a close watch for any signs that she may be being careless with her smoking but she is actually very paranoid that they will kick her out because of it and is very obsessive about making sure her smokes are out when she's finished.  She also only smokes by the air conditioning unit because in her mind it's sucking all the smoke out.  Which means she doesn't sit in comfy chair or lay in her bed while smoking.  So far.

My brother passed away this past Nov. which left me as the only family member available to take care of her and her needs.  People seem to forget that that does not mean a nice visit over coffee once a week but that I'm in charge of watching over ever aspect of her life. It means taking care of all her banking, seeing the doctor, seeing the dentist, making sure she is washing her hair and dressing properly.  It also means being in charge to make sure that her income tax is done.  

I do have Enduring Power of Attorney and am named in her Personal Directive.  This will be the 3rd year in a row that I have had to jump through all the government hoops to convince them that I am in charge of this.  I even paid a lawyer to "notorize" copies of the POA and sent them to the appropriate department. I thought I had it all sorted out last year but I was wrong as at this point we're missing a number of "T" slips that we've never missed before!!!  I know have to find a time where I can sit on the phone with a variety of different departments and an insurance company and go through all those actions again!!!  

In the meantime Mother doesn't understand what is going on and is convinced that we've already taken care of her taxes and that she talked to "James" her accountant and everything is fine.  "James retired 8 yrs. ago.  I have tried to explain things in the simplest terms possible that she doesn't have to worry about getting them done but I need to know if she got anything in the mail (even though it's all supposed to be sent to me).  On Thurs. it was a circle dance that we went around on this topic and now she is very "aggitated" because she doesn't understand what it all means.  

I feel so frustrated by all of this I could scream.  She is now so easily confused and refuses to listen to me when I try to explain.  She just keeps coming back to her original off the wall thought.  Not talking to her about it doesn't help either.   OH... it's all such a mess of confusion.     And what frustrates me the most is that the people who dropped the ball and once again put my in this position.  

I take care of my mother not so much because she is so near and dear to me but because my father loved her very much.  I'm doing this on his behalf and that is what motivates me.  

People keep telling me the same pat answers about how to treat her with dignity and love as she once did for me (she never did).  Accept that she is no longer in her right mind (I do).  Talk to her in the simplest terms and don't argue (done and done).  Allow her as much independence as possible ( yep got that one covered as well).  Don't have any expectations on how she'll behave towards me (I don't).  It's all common sense and I GET THAT she is no longer the mother I knew (which is good and bad).  I GET IT!  

But when ever I mention my frustrations people seem to think that I'm angry at her.  I'm not angry at her ..... she can't help herself.   I'm angry that it's all fallen on me and no one seems to have any viable suggestions as what to do about that.  I'm tired.  Very tired and the sad thing is I know it's not going to get any better but worse.  

How does one keep going on their own?   I'm not doing so well this week and am not looking forward to the coming weeks.  

Razz  
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Reply by oldbat
23 Mar 2015, 2:31 AM

Oh Razz, what a sad, sad story.  A mother who, from what you say, really wasn't.  A daughter who is resentful, with reason, exhasted and hurt. 

I truly empathize with you.  Am living something similar myself.  semi-paralyzed, aphasic and  brain-damaged husband whose daughters dumped him in long-term care and left me to it three years ago.It's a long, hard road we travel you and I, and you're dealling with your brother's recent death, too. 

I am so sorry about all you have to cope with and that you have to deal with everything alone.  That's my situation, too, so I "get" the hell you're going through.

Couple of questions for you:  I know that friends get really "empathied out" when faced with ongoing situations like ours, but do you have at least a couple you can turn to?  Forget the false friends with their unbelievably ludicrous and callous "advice".  I'm talking of someone who just lets you vent.  Someone you can escape with for a few hours - take in a movie, go out for lunch or dinner, a walk or even just a coffee. Someone who will  give you a much-needed hug.  You desparately need that kind of respite and care.

Your mother seems to have minimal care now.  Maybe it's time to get social services involved.  Maybe even to move her to a long-term care home, where you'd at least know that she is secure and comfortable, as well as looked after.

It's also time to get yourself some help.  Social services can assist you, too.  But you really have to advocate for yourself.  Because the burden of your mother's care rests solely with you, you may find that you're eligible for some home help or some respite care yourself.  If you don't ask, you don't get.  Something I have really learned over the past three years.  You need to give yourself breaks, too.  Another thing I learned the hard way.  When Karl was first in long-term care I toiled up to see him every day.  Now he comes down here for several hours once a week and I spend a few hours another day of the week with him at his place.  That way we share "qualiity" time, instead of "pop in" visits.  He's much happier and life is a lot simpler for me.  Of course, like you, I'm also with him for medical, dental and other appointments, but our in-home time is devoted to just being together:  a meal, a game of cards, some music and a whole lot of hugging.

And, hopefully, now that you've discovered Canadian Virtual Hospice, maybe you won't feel so alone.  Everyone here has a similar yet different tale to tell.   We all care and share.  Tears, laughter, joy and pain. 

Please keep coming back, Razz.  You'll always find a ready ear here.  And probably more than one.

oldbat
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Reply by KCBJ
23 Mar 2015, 3:17 PM

Hi Razz. First, my condolences on the loss of your brother. Consider yourself blessed that at least you can go home after your visit with your mother. My mother was with me for over 20 years. I have no other family. Just me. She passed away in September at age 99. Besides many other ailments, she suffered from severe dementia which for me meant daily ugly verbal abuse. There was no escape for me except to go to work. That meant I dreaded weekends and vacations.


I don't know what province you're in, but these are some things that helped me:


1. income tax. My mother would have her income tax done at a senior's centre. Tax volunteers would do this for a small donation. But the gentleman we had suggested making my mother my dependent and doing our taxes jointly. This meant I received a return of about $4000 as her primary caregiver. He did all the paperwork for us. Once I was given this status, the taxes were redone for the past 7 years which was very financially beneficial.


2. care. Check out your provincial government website for caregiving. You can request a senior's guide that contains really great information for various assistance and programs you can apply for to help your mother out. For example, check out family-managed assistance. This program was a godsend to me. Your mother may be eligible for this. This provided me with 55 hours of homecare by a private homecare agency which included weekends. I specifically needed this because my mother needed more care and I have 4 dogs. It gave me a break that I hadn't had in years.


Your family and friends do not walk in your footsteps. They don't understand the frustration because they don't have to deal with it. Sometimes strangers are much easier to talk to you.


Take care and good luck. There is great support on this site with some people knowing exactly what you're experiencing. Read some of the other posts as well. You're not alone. My section was called 'stressed and depressed'.


Barbara

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Reply by Razz
24 Mar 2015, 1:04 AM

I just wanted to thank you both for taking the time to respond to my post - I really aprreciate it.  

I had just finished a rather long response to you both (which went "POOF" ... grrrrr cyber gremblins) outlining more of my mother's situation and also the various Home Care things I tried to access with no result (my mother refuses to comply and she still has enough cognisense (sp?) that I can't really force her.  Not yet anyway as she does not pose an immediate threat to herself or  others.  

The income tax  "saga" has been going on for 3 years. Up until that time; although 'banking procedures" would really confuse her she still had a grasp on what she needed to get her income taxes done.  Then 3 years ago it all went up you know what creek without a paddle and it was a a night mare for me to get it sorted out.  The last 2 years have not been any better because a break down of communication with various government agencies and insurance companies.  It's INFORMATION I need so that I can take it all to her accountant.  That information is once again missing and it's once again my job to round it up.  

So although this response is much shorter than the one that disappeared it sort of covers some of the issures.  I currently have a major headache (gee, wonder why?) so I'll end here.  I just wanted to let you know that I really do appreciate you taking the time to respond.  

be good to you - Razz  
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Reply by KCBJ
24 Mar 2015, 1:20 AM

My i would suggest still trying to get your mother as your dependent and as primary caregiver. Wish i could have helped. 
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Reply by KathCull_admin
24 Mar 2015, 1:29 AM

Hi to you all
Razz I have found that if I write my post in a word document and then cut or copy and paste to the 'reply' box I am less likely to lose - only because I have lost more messages than I care to admit.
Katherine 
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Reply by Razz
24 Mar 2015, 1:44 AM

I'll look into that Barbara since I'll be talking to them on the phone tomorrow any way. 

Good point Katherine.  I usually do that when I expect that I'll be writing a longer response but today I just wasn't thinking about that.  I'll keep in mind for next time for sure.  

Thanks again - Razz 
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Reply by KCBJ
24 Mar 2015, 2:03 AM

Please don't forget to look into the tax benefits of doing a joint tax return since you are the primary caregiver. 
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Reply by Razz
26 Mar 2015, 7:45 PM

First at bit more background - My mother is "sitting on the fence" so to speak when it comes to needing more personal care.  I have had Home Care come in at various times to assess her and for the most part the services that they would offer her at this point aren't anything that she'd agree to.  For example for awhile there she was losing a lot of weight and not eating but she refused any kind of "meal assistance" and anything I brought in (her favorites) she wouldn't eat.  At that point if a client refuses services or won't be compliant they won't come in.  She must have gotten the "prod" however because she has since gained a wee bit of the weight back.  I've also had 2 mini "mental evaluations" done on her and naturally she was sharp as a new penny during those.  She did stumble over the questions I suggested that they ask her but neither "tester" felt that her dementia was an "issue" at this time.  I should have had them take her on her weekly "errands trip" - LOL 

Her "banking" is not an issue since we have a joint account as well as joint access to the safety deposit box.  The bank has been very good about contacting me in regards to her investments and such.  She has been very frugal with her money all her life and so she has no concerns where is comes to her financial status.  I did have to take her cheque book away from her however as she was sending our regular cheques to assorted "charity" organizations to the tune of $300.00 - $500.00/month and most of them were not ones she'd normally support.  Any charity sending her a letter would get a cheque and thuse some of them had her on a "regular" list that came monthly.  She equated them with bills almost and she was adamant that if they sent you anything you had to pay for it - such as a pen or address labels.  Sigh.  Well talking to her didn't help one bit, not even when I pointed out that we would have to cash in one of her investments because she didn't have the income to cover all these cheques.  Normally that would have stopped her cold but not now.  So I took the cheque book away but that created a great deal of distress for her (and me) even though I assured her I would write any cheques she felt she needed to write.  In the end I compromised and let her have a few at a time.  There was a huge fiasco at Christmas time when she sent out 3 different sets of cheques to a couple of the granddaughters and no cheques to other ones.  Thank goodness my neices kept me well informed on what was going on.  That took a few tries to get it sorted out - Tongue Out 

Income Tax - Spent almost 4 hrs. on the phone on Tues. We have a good accountant who does her taxes making sure that she/we get the best tax breaks we can.  Because she pays her own rent etc. and does not live with me she is still not considered a "dependant" nor I her caregiver.  No, the problem with the income tax comes because of her misplacing or not getting all of her "T" slips.  The bank sends theirs directly to me but I have yet been able to get the government or pension plan to send them directly to me.  Even with speaking with her on the phone and my sending in notarized copies of the POA it's still not sorted out.  They'll send copies to her but not to me which puts us back to square one in a sense.  They were able to give me the information I needed over the phone however ......... go figure Yell !  Revenue Canada would send the copies to me if I could answer a couple more "security" questions.  Sure - no problem.  HA!  They wanted her last 2 previous mailing addresses.  Well the first one was easy I thought since it was the family home that they lived in for over 40 yrs. and I grew up in.  From there she moved to an apartment for about 15 yrs. and then to the lodge.  So I gave my old home address and that was not one they had listed!  The apartment one I could only remember partially.  So in the end it was a no go.  Any adresses prior to when I was born are totally out of the question as they would be more than 62 yrs. old!  I understand the need for protection of this sensitive information but how many times must I jump through their hoops.  This will be the second year in a row I've mailed out copies of the notarized POA..... make me wonder what happened to the ones I sent out last year.    

Health Issues - her moderate COPD does give her shortness of breath however her doctor (a wonderful man who really takes time with her but doesn't send her for unesseary tests) and I agreed that putting her on supplemental oxygen at this point would be asking for disaster.  With her shsort term memory problems and her heavy smoking habit she more than likely to blow herself up.  Since the "smoking" is her only pleasure in life and so far she has had no concerning events with it (she's extremely paranoid about setting things on fire and has quite a routine she goes through when she does smoke) he wants to just leave things as they are now.  At 93 shotness of breath and fatigue are pretty common.  Yes she would benefit on the one hand and could create a tragedy on the other so it is as it is at this point.   A move to a "care" center would take that smoking away from you since in Alberta they are not even allowed to smoke on the property.  Knowing my mother she can be very resourceful when she wants to be and I can see her doing her best to get around any "no smoking" policy.  I used to work at an assisted living facility and I saw first hand what the dedicated smokers would do.  One poor soul (at 101) snuck out in the middle of the night (in the dead of winter) in her night gown to have a smoke and it was just pure luck that someone saw her out of the corner of their eye and brought her in before she froze to death.  

Still on the topic of "health"; when I phoned my mother on Wed. I found out that she had FALLEN on Mon. and bruised her hip.  She didn't want any fuss over it as she was just sore.  My immediate reaction was to take to the hospital for x-rays and maybe an MRI to see if it was the result of another "mini stroke".  She wasn't having any of that since Tylenol did the trick for the pain.  So once again I'm in between a rock and a hard place.  It sounds like it was a minor fall since she has been able to get around and go to meals but on the other hand - well falls are a concern.  This is another reason why I really hate being the sole caretaker as I have to make the best decisions for her safety but I also have to be careful not to over react.  Bahhhhhhhh.   I won't be able to actuallly see  her until Sat. so I'm hoping I made the right "call" this time.   Frown 

I know that I am not telling anyone here anything new.  It's those who are not "living it" that see all the nuiances and extra duties I have to carry out.   My husband trys to support me as best he can as do a couple of friends.  But as you know .. they totally don't "get it".  My youngest daughter (34) has even accused me to over reacting to her Gramma's condition and feels like I'm trying to push her into a care facility.  She hasn't seen her Gramma in over a year since she lives a fair distance away.  In other words she has yet to see her on a regular basis in order to grasp the full reality of the situation. She can't understand why I'm "making such a big deal" out of everything.  I long ago quit sharing my frustrations with her as I don't need her critizm or the need to justify the things I have had to do.

Bless you all who have read this far.  It does feel better just getting it "out there" and knowing that anyone reading at least understands what I'm talking about.  There are so many days when I just want to sit and cry .....

Razz  

 
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Reply by JennJilks
29 Mar 2015, 4:26 PM

Razz,
You are quite the woman. You are trying to do the right thing, no one believes you (except those of us who have been through it), and it is so frustrating.
My dad was similar, in that he appeared to be functionning with a brain tumour (and dementia and delirium later on), and my POA was silent on when it would kick in. The banks are terrible with this.

For what it is worth, if your POA is silent on when you can take over, you should just have it be enforced.  This is something I dealt with. [Deep sigh!] My dad's bank manager wanted dad to sign the papers turning over control to me. He refused. She ended up taking his bills into her bank (she was a friend, a neighbour and an enabler)  and payin g them herself. I understand frustrating.
But I vent. And venting is VERY healthy, trust me!
 
At this time, it seems that it's time to let go the things you cannot change, and deal with the things you can change. You are doing everything right, and yet you get frief from people! Yikes. Been there, done that. I got grief from dad's bank manager, too. It was awful. We moved into dad's house and it was so uncomfortable we had to move away.

Smoking at age 93 isn't going to kill her! The oxygen will. You know that. Good for you!
 The simple thing is you can either argue with mother over an 8-year dead accountant, or simply buy in and agree with her. It will save you grief!
Coudl you put in a change of address and have your mother's mail go to your house? 2 cents worth of advice!!! sigh.
My friend is is the same position as you, and her banker lets her know when strange things go out. Bottom line is, is she want to send money to everyone, you may not be able to control it! Can you switch out her cheques? Give her dummy/pretend cheques?  
You know the ones the banks give you before you have ones printed. If there isn't an account number on it, charities cannot cash them.
Just a thought!!!
Anyway, vent away. We all understand how awful the situation and how much people simply do not understand. Take care! 
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