Caring for elderly 86 mom....older sibs are not helping

[Ranatra]

chris2597, I'm glad you got to go on your trip and get away from the everyday stress and worry a bit.

My sis took my Mom home for 4 days (which happens about once a month) and I so look forward to these "free days" of doing whatever I want. This morning I am taking my DD and my 4 month old granddaugher to breakfast and this afternoon I will be a the pool with a good book.

I would also LOVE to see a Caregivers Support Thread Here where we could all come and talk and give support to each other.

 

[chris1gill]

Chris2597, I'm glad you've set the boundaries that you have... you have to stick by them, and you know she will try to make you feel guilty for not doing more... But don't give in... your health is at stake as well, you owe it to yourself and your family to set and keep those boundaries

 

[froglady]

I second (and maybe third) the need for a support group thread.

Only someone caring for the elderly can understand how a broken bedframe could lead to a hospital admission. DM's life is a house of cards...pull one out (in this case, her normal bed with small siderail) and the rest come tumbling down. Add in a level of bureaucracy which has rules against more than one delivery/move-in per day...which must be done between the hours of 9AM-11AM or 1PM-3PM and NEVER on the weekend...and you have one little old lady falling off of a cot in the middle of the night. No serious injury, but of course, she ALWAYS has underlying medical problems which might need addressing if recognized. And hitting the floor doesn't help her arthritis and bad hip. (broken in 2002)

Ah well, it's off to her room (to feed the cat and get her toiletries) then to the hospital (when last I saw her, she was still in the ER waiting to be admitted) then run a few errands, make a few calls, then wait for the new bed delivery at 1PM. Then back to the hospital to wait for discharge. Last time in (Nov), her doctor wanted to do all sorts of tests because of her heart (she has chronic heart problems) I refused, as the invasiveness would probably kill her, or make her quality of life even worse...that whole house of cards thing again. I just want to get her back to her former functioning level, if possible, so she doesn't have to move again.

At least she'll be going home to a real bed, with her siderail in place.

 

[Nancyg56]

to you and to others who are caring for their family members. I understand the aversion to placing a loved one in a nursing home or an assisted living facility. I wonder if there are respite services available in your area. We have some in our area and it is possible to hire a companion who is able to provide care and stay in your home. The service is pricy, but certainly less expensive that losing one's sanity. This may be a way to get a break and know that your family member is being cared for in a familiar environment.

 

[roseprincess]

I have begun to set some solid boundaries....I feel badly for my mom but she has done some of this to herself....I would stop by more if I could just run in and out, check on her, do whatever needs doing and leave....this would be possible since I work and shop near her home....problem is...she gets really ticked when I pop in, rush around and leave. I have told her over and over that I am working, have appts, whatever and just stopped for a quick hello and to make sure she is ok. I know she does this to others that come by and I wonder if this is why some of their visits have either stopped or declined.
I decided the first boundary I was setting concerned the above. I am going to schedule her dr. appts, hair, shopping, household chores, whatever for the 2nd and 4 th thurs of the month...she has me from 9-2. I am going to make no excuses for the times I can only run in and out on my way to or home from something. I will try to schedule a dinner/lunch with her once a week. My dd17 and dh stop in during the week so I know she will be getting other family member visits....she also has her helper 3x a week, her neighbor brings her mail to her daily, and has a lady from church bring communion once a week...so she is getting plenty of attention...maybe too much. Once I get this under control I am going to set a household chore boundary. I am either going to hire someone (she will pay) to help with housework or her helper will have to take on the task (she basically gets paid to make lunch and visit...that may have to stop...I need help).
Lately I have taken a look at my life and I am not good about setting boundaries with anyone...I dont like to say no, I want to be liked, the good girl.... but it is taking its toll....and I have to make some changes.

Glad to hear you are making some boundaries.
Just remember to stick with the boundaries, no matter if your dmom complains, gives guilt trips, etc. She is in good hands with the caregiver, you ,and your family, so she will be fine!


Rosemarie

 

[Chris2597]

It has been a bit of a ride this week with my mom....she is balking at the "boundaries".....but I am not budging..one incident...I took her to a drs appt yesterday morning, out to breakfast, picked up her hearing aide from the repair shop, took her home, did a couple things at her house and then went home. She called me this morning to ask....what I had done yesterday and why I didnt come back....I told her that I had things to do for me....and was there something she needed....She said no, I just thought you would come back....I had been with her for 4 hrs...I could tell she didnt like it...I had called her Thurs night to remind her that I would be at her house at 9am to pick her up for her drs appt...she scolded me for not coming over that evening...she said she needed her hair rolled...I told her that her helper was suppose to roll her hair after her shower and why didnt she let her do it...she said....well she doesnt like to roll hair....I told her well....she is being paid to do it and had assured me that she would do that for you....I am sure she told her helper not to bother as I would do it.... When I showed up for the appt she was sitting with a horrible turbin thing on her head...made her look even more frail and pitiful...I took a curling iron to it and in 5 min she looked fine...but reminded her that in the future that this was her helpers job....

Renatra....I am glad you enjoyed your respite....I did the same thing on Fri afternoon....DD and I went to the pool, lounged, swam and relaxed....It was great....

Froglady....I love your analogy about the house of cards....that is so true and my mom fits into that to a T....
How is your mom doing after her ER trip?

 

[Chris2597]

How is everyone doing? I havent seen any update posts about how things are going while caring for your family member...

 

[Nutsy]

Just want to add a little insight into "the other sibling" side of things.. This is from personal experience with my own mother and my brother being her carer.

Caring for my mother was not something I could do.. I know this about myself and I was glad my brother was able to do it when Mum got frail.

He lived at home.. but Mum still expected me to be there every weekend and come and do her housework for her.. my brother was getting a carers pension from the government for supposedly looking after her. Funny tho, he worked 5 days a week and when he was hiome spent 99.9% of his time down stairs on his comptuter or in front of his movie screen with the volume up so high we would never have heard Mum had she called out for assistance.

I visited as often as I was able.. when she was in hospital I was there every weekend, but I might add... I was expected to be there daily.. I don't live 5 mins away and I also have my own family to look after.. but none of this mattered to my mother.. it was all about her..

She would ring me at 7am to tell me she wanted me to call in home on the way to the hospital to pick up some cough lollies for her.. visiting hours start at 10, so what was so important about ringing at that hour of the morning.. other than to be very annoying.

See, my mother was a very demanding person... my brother was the golden haired child.. he could do no wrong in her eyes. She had a fall one day and knocked herself out (he was home, in front of his movie screen with the volume up).. when she came to, she rings me to tell me what happened.. doesn't call my brother up from downstairs or bang on the floor or anything to get his attention.. oh no.. she rings me.. like I can do anything when I live an hour away.

So, to those of you who are caring for your elderly parents.. good on you.. but do spare a thought for how your sibilings may feel about the prospect of doing it themselves.. it's not something we are all comfortable with doing..

My Mum passed away last October... she was determined she was "NOT" under any circumstances going to to into respite care or a nursing home or any such thing.. even though her doctor had advised it... oh no.. she was going to be a burden on her family and stay home..

I loved my mother, but I didn't love what she did or how she treated me and my family..

At least with my brother caring for her, she couldn't get her own way.. he took no nonsense from her,whereas with me she would walk all over me, would even insult my husband.

But that is my story... from one who has been there and been the "other" sibling... all I ask is that you not judge your "other" siblings.... some people are just no good at caring for the elderly. In my case because I was the daughter it was "expected" of me.. I've been tainted and outcast from certain family members because my mother told everyone her version of events.. she was as charming as anything to everyone else... everyone exept me that is.

ETA.. my mtoher had home help come once a fortnight and had meals on wheels 5 days a week. The home help was never good enough...she would stand over them to make sure things were done to her satisfaction.. like wash the back steps.. not that they needed washing.. but she was making sure "other" things were done.

Up to the day she died.. she still cooked the evening meal and hung the washing out on the line.. my brother.. generous guy he is... loaded the washing machine for her and put it on... she was 88 when she passed and very frail. Yet he got a carers pension?? Home help was a free service and meals on wheels cost her a few $$ but she was forever complaining about the food.. it was tasteless or it was cold.. she was the last on the list in her area to get their meal... I told her someone has to be last.. we can't all be first... another regular complaint was it often didn't arrive until 12.30pm.. I fail to see the problem with that one.. but that was her.. never happy unless she was complaining.

 

[Chris2597]

First, let me say I am sorry for the loss of your mum.... I think you are very hard on yourself...You lived an hour away from your mum, your brother was living in her house, being paid to care for her, she had help around the house, meals on wheels, and you visited and helped regularely. You knew she was being cared for.
I am one of the posters that had a few complaints about my siblings...Both live out of state so obvisously I know that my sibs could not and would not provide the level of care that I do, but they dont provide anything....they call a few times a month...have friendly chatter with mom, but have never once in 11+ years lifted a finger. They are both retired and could easily schedule some time to at least visit their mother...yes, on my part it would be great if they could be here so I could take a worry free week vacation, knowing they were here looking after her, but that has never happened. She is typically sweet and charming with everyone (except me when she gets in a mood or isnt feeling well)and would make their visit as enjoyable as possible.... My sister once said, but I cant come out and "waste" my vacation time....but she has assured me not to worry that "when the time comes, she will be here to help me clean things out"....we all know what that means...
I agree with you.... not all sibs can provide daily care for their elderly parent and it typically falls on one person..The care of a frail elderly parent can be a daunting task, one which at times can be thankless, tireing, and can lead to resentment..I admire that you were able to distinquish your limits, knowing that you could not take on the job 24/7, but it sounds like you helped in other ways..I only wish my sibs would do 1/4 as much as you did....
I dont think the threads about sibs that do nothing to help was anywhere near talking about people that are in a situation like you were in....it is about family members/sibs that only offer their opinions, criticsm, but never offer to step up to the plate on any level.

 

[Chris2597]

Anyone out there that had been contributing to this thread?? If so, how are things going?

 

[RNMOM]

Chris,

I have several friends and coworkers over the years who have had the same situation. I don't understand how families can feel this way but as a parent, I can tell you each of your children is different from their siblings in so many ways. It sounds like you are burned out and need a break. If you are able to compensate your sister, how about hiring a 24 hour care giver to give you a week off instead? I know here in our area there are a few assisted living and nursing homes who have programs for short term care. You might also speak with some homecare facilities or her doctor's office nurses. I know having a non family member is a whole different issue but if you speak with your mom and get to know the person before hand, it might work for you. I might also suggest having a neighbor, friend, pastor check in on her daily while you are away just in case.

Your mom understands what is going on and the love she has from you and for you is immeasurable. I do believe our rewards in life are as much what we can do for others as what we get back. You are a blessed and a special person who loves and cares for your mom. She is very lucky indeed.

 

[froglady]

My mother survived her hospital/nursing home stay, but it took a lot of intervention on my part. She was hospitalized for UTI and dehydration.

Basically, she was exposed to a whole batch of new (to her) doctors who had no insight into the "house of cards" that is her health. While waiting for medicare to approve a nursing home stay(for rehab- three days of rehab for each 24 hours of bedrest is the norm for her), some gung-ho doctor decided it was a good time to treat both her 15+ year cardiac problem, and her 30+ year borderline diabetes...without talking to me first, and all within a 24 hour period! So she received 3 new meds in a 12 hour period, and went from a tired, alert, little old lady just waiting for a rehab nursing home transfer to a feces covered, raving lunatic having breathing difficulty who was inches from falling out of bed as I walked in the door. The worst thing was, no one thought it was alarming, and I should be notified! I had been told that she had vomited, and her transfer was being held because of it. Not one word about her losing her BP after a beta-blocker, or her confusion, or that she was being given insulin! This despite the fact that her chart clearly stated that I was her POA/health care surrogate, and she was unable to give informed consent.

To make a long story short, I spent the next few days convincing a bunch of strangers that I did have a bit more insight into my mother's health than it would appear. Had they asked me first, I would have told them that trying to "cure" her had almost killed her 15 years ago, so THAT was why her cardiac condition was not being treated aggressively. I also would have told them that previous doctors had tried to treat her diabetes but that she was non-compliant, and the effects of her disregarding orders had created more problems than her diabetes. Also, if she had to be on insulin, she would have to move out of her assisted living facility (which she had just moved into a month earlier) and into a nursing home.

Why is it so hard for some doctors to understand that just because you CAN treat a problem doesn't mean that you SHOULD? I know that not treating these problems may shorten her life, but so could treating them. She's almost 85!!! At this point, quality of life should be the only consideration. What's the point in keeping her alive longer if she'll end her days in 1/2 of a room in a nursing home not being able to eat her favorite foods ? She wants to die in her own little "home" with her cuddly cat by her side, and an empty box of chocolates on the bedside table.

So, I will continue to bring her to the hospital (if needed) for easily treatable conditions (no reason for her to die from an untreated infection) but will tend to ignore things that would require invasive procedures.

Her PCP and I are on the same page...just maintain the status quo, only introduce new meds if absolutely needed, and DNR if things go bad.

 

[Chris2597]

Froglady....oh my...what a horrible ordeal...but sadly we have experienced some of the same....I think it is a common problem with overmedicating. the elderly. My mom sounds very much like your mom....she wants to be in her own home, watching her fav TV shows eating her fav foods...even if they are not the best for her health...but at almost 87 ....so what. Her PCP is really good and agrees that quality of life is the most important thing at this point. The problems we have encountered have been primarily while in skilled nursing after a health crisis ...not every time....a couple of times the skilled nursing drs helped....she had one dr that was a geriotolgist...he tweeked her meds, explained it to me...her pcp agreed when we saw him and things have improved ....
I was able to go away for 2 ---1 week vacations this summer without the help of my sibs...I hired someone to come in and help everyday, which was enough to ensure her safety....of course I got grief from mom over it....but I have set some boundaries which I am going to stick to . I dont even let my sibs know when I am going....just hired someone, they called her during my trip and found out I was gone....They wanted to know why I didnt let them know....WHY?? would they do anything.....NOT!!
My mom also has a DNR. We have a copy, her dr has one, and there is a copy with her med lists posted on her fridge...just in case EMS is called and I am not there. Now get this....my sister was very upset that our mom got a DNR and told me that I should hide it....I was like WHAT!! I explained that without it she would be "jump started", kept alive by machine if something happened...she still was not comfortable with it...but she is comfortable not visiting her mother in 11 yrs....

RNmom....Thank you for your words....In most instances I look at my caregiving in a positive way but sometimes it is overwhelming. Just last night my moms attitude was very hurtful....My ds20 had an accident and we need a place to store his car while deciding what to do with it...I asked if I could put it in her empty garage....that she never goes in for a couple of months....She got very controlling....sarcastic....I finally told her not to worry about it...that I would just pay to store....not worth the hassle with her....These are the times that I get resentful of the time, energy, worry, time away from my family that I have given over the yrs. She is always asking how she can ever repay me....well this would have been a small way...but she has to pull the power card....