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

[HoneyPooh]

to everyone dealing with this type of situation. I've been on both sides of it, as a caretaker and also as a sibling that lives to far away to be of as much help as I would have liked.

My father suffered his final and most damaging stroke while visiting my sister in Texas. She ended up doing just about everything because we all live in NJ. We did what we could from here, paperwork, packed up his apartment etc and we visited often that year before he passed away but we still felt bad that she did the day to day work. We made sure to let her know how much we appreciated what great care she took of dad in his last months and we are closer to her now than we ever were before.


Right now my husbands parents are in poor health but refuse to live in any other situation besides how they have always lived. Neither of them is capable of taking care of themself much less each other. My husbands brother passed away two years ago and he had one son (age 31) who is of no help whatsoever (but feels that he should inherit the house in it's entirety ) and my SIL is only of help when she is making a show of it. She does things like go out and buy FIL a $2,000 recliner (that will quickly smell like urin) or a $7,000 scooter (that he can't get on and off without help and guess who gets the call to help with that? NOT SIL). Between my DH and I and our oldest son we make about 20 trips to my in-laws house per day. We help FIL out of bed in the morning and help him with the bathroom. We take care of their dog, clean, go to the post office, go to the bank, mow the law, grocery shop, run them to doctors appointments and sometimes we just plain keep them company. My SIL complains to everyone that she does everything. My FIL will yell to anyone who can hear that we do absolutely nothing to help out. It's enough to make a person scream.

The time now is 9:51 a.m. and my FIL has called 4 times and my DH has been over there twice. The day is young................

 

[disneyaggie]

I work in healthcare and hear stories like this every day (sad, but true).

Forgive if some of this has already been posted, but at least I am trying to offer some advice:

1) See if your family member has any long term care insurance. Oftentimes the non-skilled portion of home health care is covered. The skilled is usually paid by Medicare and involves a nurse and/or therapist.

The non-skilled are the aides that can bathe, dress, groom, clean up after an incontinent issue, remind the patients to take their meds and cook for them.

The company I work for is awesome! We help so many families in this situation, especially when no one else in the family will assist.

2) Call your local Alzheimers Association. They may have respite vouchers that will pay for a non-skilled person (usually from an agency like ours) to come in and give you some respite care. Even if it is for a few hours a week, that is better than nothing.

3) Call a local agency (even ask a home health care company who they would recommend) to check on prices for a "sitter". Or even call someone from your Church or one of your neighbor's Churches.

I will continue to keep you in my thougths and prayers. If you are in the Dallas, Phoenix or California areas, PM me and I can get you connected.

 

[RadioFanatic]

I feel for all of you caregivers. I had to do this for my GM, and yes, all of her children, including my DM were alive - but b/c I have no children yet, I was the available one. My GM, however, also became my BF and I miss her dearly. She had her faculties until the day she passed and I will always remember my talks with her. And she knew I helped and she made sure I knew she appreciated it. It was also interesting to see how, even when her kids were around (not often), it was me she chose for help b/c she only trusted me.

What I don't understand though, and probably b/c I wasn't in this position, is why you let your parents criticize you and treat the others like gold? I would make darn sure to let them understand that I'm helping them and criticizing me and complaining about me when I'm the only one doing anything is not going to help their situation. Although GM exhausted me, I never minded it b/c she made sure I knew she was thankful. That alone goes a long way.

 

[PrincessKitty1]

What I don't understand though, and probably b/c I wasn't in this position, is why you let your parents criticize you and treat the others like gold? I would make darn sure to let them understand that I'm helping them and criticizing me and complaining about me when I'm the only one doing anything is not going to help their situation. Although GM exhausted me, I never minded it b/c she made sure I knew she was thankful. That alone goes a long way.

I didn't have the heart to tell my mother that nobody else wanted her. I probably should have, considering how she treated me, but I am a kind person. I most definitely did let her know that the way she treated me was unacceptable, and at one point I even told her that I could no longer have her in my house because of the way she treated me, and that I would help her find an apartment, but the next week she acted like nothing had happened. At that point I let my sibs know that somebody else would need to take mom and dad.

I kept my father out of a nursing home for a year, and I'm very glad of that.

 

[lisajl]

I went to see my mom in the nursing home this morning and she is not doing well. Her neighbor across the hall, someone she has know for quite a few years, passed away on Friday.
It took my mom about 1/2 hour to remember that her friend had passed away.
My sister and I knew about it.
Mom's memory is really going. She told us she is down to taking one pill a day. We don't know where that came from. She takes about 10 in the morning.
Man, it is hard. It is hard seeing her in a nursing home, hard seeing her mind go, hard seeing how difficult it is for her to get around.

We definately need a support group.

Lisa

 

[Chris2597]

I would love a support group thread or board concerning this. I just got back from my moms. She is having a good day today..thankgoodness!!..I have a paid caregiver set up for her for next week while we will be gone, PT coming 3 times, and friends that will be checking in on her daily....and of course us calling a couple times a day.... I have worried about this trip so much that I have convinced myself several times in the last couple of weeks to stay home, let dh take dd to FL and have fun, visit family...ect....Dh tells me that I am only an airline flight away if I need to come home....I really do need a break....and I know he wants me with him and dd....

 

[Ranatra]

Chris2597, I go thru the same exact thing when DH and I go away, and believe me, it's not often. I get so anxious and stress so much about leaving my Mom. AND my twin sis is taking care of her while I'm gone, so it's not like she's not in good hands. I just worry because she lives with me, we have a routine, and My sis doesn't know everything like I do. My mom is used to ME taking care of her and I'm always afraid she'll be upset about it and then I feel guilty for going away. We went to WDW in October for my birthday, before that, it was 3 years ago that we went away. I know I shouldn't feel guilty, but I can't help it. I imagine you are feeling some of these same things.
I hope you can relax and enjoy some time with your family. I usually start to calm down by day 2.

 

[disneychick05]

It was very interesting to see this post today. I am a research interviewer at a medical university and the project I am currently working on focuses on women caregivers. I have interviewed many women in this position and I am very aware of the difficult situation that caregivers are faced with everday. The outcome of the research wil be to present the information to public policy makers, scientists and health care professionals to possibly get some legislation made in order to accomodate caregivers. We also hope to incorporate some sort of respite care program into the outcome. Right now we are interviewing women caregivers between the ages of 50-64 who work for pay an average of 35 hours a week. The care must be unpaid help for someone who is 50 years or older and does not live in an assisted living or something of that nature. If anyone would like to contribute to our study please PM me and I will provide you with the toll free #.

 

[Chris2597]

I would love to participate in the study but I have 2 more yrs to go until I am 50.
Interestingly...woman not yet in the caregiver mode are often the worst to talk to about caring for an elderly/sick parent. I think we all plan on being Super Woman but soon find out when faced with caregiving that it is unrealistic. One of my bestfriends parents are the same age as my mom, mid 80's and were in great health up until a year ago...When I talked to her a few yrs ago telling her that I was stressed, resentful that I had to give so much or when I said that I didnt think I could have my mom live with me if her health failed more...she would say she would be there 24/7 if needed for her parents(of course she wasnt there yet), She said that they took care of her when she was a child, basically she would never feel the way I felt...of course i have been doing this to some degree since 1991. Well....in the last yr she has become the caregiver. The first month or so ....she was super woman, burning the candle at both ends. I told her she really needed to pace herself, set boundaries and not do too much or more than they needed, because whatever level of care she established would be expected. She wouldnt hear any of it and I left the conversation wondering if I was not doing enough, not sacrificing for all that my mom had done for me when I was a child..Well...now months out my friend has hired a helper for her parents, has established some boundaries and admitted that she had totally worn herself out physically and emotionally. She isnt so quick to say that she would move her parents into her home without hesitation to how it would effect her or her families life. It is so much more to deal with than most of us invision. I think her response was so normal....I did the same thing at first....I tried to be Super woman, wife, mom, daughter, sibling, employee, friend and caregiver to my elderly sick parents....I wore myself out....I did finally establish some boundaries, time limits, and a working schedule to make sure everything gets done..I stumble occasionally and feel totally overwhelmed, I still struggle with guilt, wondering if I am doing enough or the right thing and as i said in a previous post...vacation time is the worst, so stressful, especially the time leading up to leaving. In a way I wonder if it is worth the hassle.

 

[DVC Sadie]

With me being the only surviving child I took on the responsibility of taking care of my parents when they needed help. My dh and I moved from Maryland in 1998 and helped my mother take care of my dad until he died in 2002. My mother then required care for the last few years of her life so we took care of her until she too passed.

I feel blessed to have been able to care for my parents when they needed me. I never have to wonder if I could have, should have done more.

 

[Chris2597]

I went on the Fl trip....I had a very restful and stressfree week, for the most part. My moms helper called several times to give me updates..Some of the calls were legitimate and others were un-necessary and only served to worry me as there was really nothing I could do 1200 miles away....I also called daily to see how things were going. Mom did ok, but of course had to give me the guilt trip that she was not feeling well, not eating, and having a hard time sleeping.
I went to see her the day we arrived home and she was fine....smiling, having lunch and was not the pitiful little old lady I talked to on the phone the day before....

 

[froglady]

I attended a "Caring for Elderly Parents" class a few years ago, and two things keep coming back to me.

1. In some cases, you cannot possibly fulfull your parents' every want and need. What they REALLY want is to be young, healthy, and independent again. So you have to decide what are truly needs...food, shelter, health care, safety...and what are wants...lunches/dinners out, company, etc. Arrange for all of their needs to be provided for, either by yourself or by a third party. Then decide how much of your life you can comfortably give without having a negative effect on YOUR health and family.

2. One of the other participants (married with children), who had lunch daily with his elderly mother, took care of all of her needs and wants, etc died of a massive heart attack two years ago. His mother is still going strong.

That's when I decided that when the time came, I WOULD put her in assisted living, a nursing home, etc. I have to keep reminding myself that I cannot possibly make her totally happy, but old habits die hard.

Of course, dealing with an assisted living facility has it's own challenges. For instance, my mother's bed broke yesterday(due to terrible movers...she's been there for only a month...that's a whole different vent) so I went out and purchased a new one. The store couldn't deliver today. The facility doesn't allow anything to be delivered/brought in on the weekend. Monday they already have moves/deliveries scheduled for the ONLY hours when they are allowed, so I have to wait until Tuesday. In the meantime, my mother is sleeping on a cot. I had to schedule the elevators so my neighbor and I could bring in her reupholstered loveseat(check with shops...they have some wonderful vinyl fabrics that look EXACTLY like real fabric!) and it took us all of 10 minutes. No one else could deliver/move in that time frame.

 

[roseprincess]

I went on the Fl trip....I had a very restful and stressfree week, for the most part. My moms helper called several times to give me updates..Some of the calls were legitimate and others were un-necessary and only served to worry me as there was really nothing I could do 1200 miles away....I also called daily to see how things were going. Mom did ok, but of course had to give me the guilt trip that she was not feeling well, not eating, and having a hard time sleeping.
I went to see her the day we arrived home and she was fine....smiling, having lunch and was not the pitiful little old lady I talked to on the phone the day before....

Good for you that you went on your trip!!
See, your mom did fine with the caregiver's help.
To be honest, when I worked at this one nursing home as an RN, this nursing supervisor told me that elderly people regress back to children, ie. they want attention, give guilt trips when they don't get what they want, etc. Not saying this to get you upset, but this is what I learned from this one nursing supervisor. And for the most part, this is so true what I have seen working at nursing homes and with my own grandma, who is 90. My own mother is going thru this now with my grandma( my mom's mom). My grandma lives in a nursing home, about 10 miles from us. She is demanding about her clorox wipes, bathroom sprays. My mom buys all this stuff for her every week to make grandma happy. My grandma was a very huge "clean freak" when she was younger, and she still is, with all these wipes she asks for on a weekly basis. My grandma gets emotional on the phone sometimes and says no one visits her. My mom goes every Sat. to visit. I go with my dh and my kids once every 3 weeks(I have small kids). Grandma's brother(he is 85) and his wife go every week to visit. Other family members go occasionally to visit her.

Regressing when getting older is a fact of life, just part of life and the aging process. Whether regressing physically and/or emotionally (acting as a child,etc).
I had to chuckle when you said you visited your mom just when you got back home from your trip and you said she was fine, eating, smiling,etc. My grandma is the same way when she complains she doesn't feel well, doesn't want to eat,etc. As soon as someone from the family visits her, she's fine ie. eats ,smiling, etc.


Rosemarie

 

[VistaLeigh'smommy]

I think that the best thing for siblings to do for the caregiver sibling is to send along some money. I know it doesn't make up for not being there, but it sure helps the caregiver!


I can't tell you the amount of money my father spends on my grandfather who lives with us. Everyday it's a new thing. Co-pays, bandaids, denture strips... you name it! My grandfather doesn't have the money to pay for all of these things so my dad is always paying for everything.

Sending some money along to the caregiver to use on the parent, or even just a giftcard for a nice dinner out can go a long way!

 

[roseprincess]

I attended a "Caring for Elderly Parents" class a few years ago, and two things keep coming back to me.

1. In some cases, you cannot possibly fulfull your parents' every want and need. What they REALLY want is to be young, healthy, and independent again. So you have to decide what are truly needs...food, shelter, health care, safety...and what are wants...lunches/dinners out, company, etc. Arrange for all of their needs to be provided for, either by yourself or by a third party. Then decide how much of your life you can comfortably give without having a negative effect on YOUR health and family.

2. One of the other participants (married with children), who had lunch daily with his elderly mother, took care of all of her needs and wants, etc died of a massive heart attack two years ago. His mother is still going strong.

This is so true, that as a daughter or son to our elderly parent/parents, you cannot fullfill everything for your elderly parent. Concentrate on their basic needs, but not to overly do it, like statement #2 . Poor guy died from the stress of taking care of his own mother plus providing for his own family and children. My mom and I joke that my grandma is going to out-live all of us!! With all the stress and worry grandma does to our family, my mom and I truly believe this, that grandma will out-live us all.

Rosemarie

 

[sugarpie]

My mom spent years caring for my grandmother, in my grandmothers home, along with another sibling. All to keep a promise to my 95 year old grandmother to not put her in a nursing home.

When my parents finally got all their children out of the house they should have been enjoying themselves & traveling. But they couldn't. Mom had to care for Grandma. There would be plenty of time for that, they thought. But then my dad was diagnosed with cancer, and he died a few months later.

Everyone caring for an elderly parent needs to know that they are not doing themselves any favors by putting themselves last. You are not guaranteed anything in life & sometimes you have to put yourself first.

My grandmother lived to be 100. My dad died at 50.

 

[Snowysmom]

I am glad that you went on your trip. You definately need some "down" time. My elderly father is in a nursing home after several health issues, the last being severe GI bleeding and intestinal surgery which he was not supposed to have survived. He surprised everyone. He begged us years ago not to put him in a nursing home but there is no way we could care for him with the competance and knowledge necessary for his health issues. He can't walk any more and is in frail health. But, he'll probably outlive us all he is so stubborn. He is in a good nursing home and the head nurse is very caring and really makes sure the patients are well taken care of. When we asked if he would have a problem staying at the nursing home long term, he said not at all. He said, everyone is taking good care of me. I have had to do alot of running around to get all his finances in order and that has been very taxing, believe it or not. Pre planning his funeral was not easy. My brother is supposed to do a few things but so far, nothing. I cannot continue with what I need to do until he does what he is supposed to do. He is single, lives in my father's house, and has no responsibilities other than helping to care for my father and his job. I have a house, family, and a part time job. Siblings are fun!

Elderly parents do like to use guilt trips on their kids but you just have to look past it. It sounds like your mother was well taken care of while you were gone so now you know you can take care of yourself and care for your mother. Take care.

 

[Chris2597]

You all are so right about the guilt trips....The funny thing is my mom does not play the guilt card with my two sibs.... at all...just me.
I have come to realize the intense amount of stress I have been under..I have been getting stress headaches, racing pulse, tense neck and back and I couldnt sleep.. my dr prescribed Ambien awhile back to help the sleep issues...I would be exhausted, falling asleep watching TV, but as soon as my head hit the pillow....I was wide awake thinking about everything I had to do the next day, appts, is mom ok....ect....and up until 2-3 am, then up at 7am....While on vacation I only had to take it once...the night my moms caregiver called and said my mom was not feeling well, hadnt eaten and was very distressed..I tossed and turned, worried, played out scenarios in my head.... The other nights I hit the pillow and didnt move all night. I didnt have one headache, racing pulse, and my back/neck were not tense, except for that one night. DH and I stopped by a few hours after we got back and I started getting the tense feeling on the way over and it has pretty much been that way since I got back....It was such a relief to feel like myself again while on vacation....

 

[chris1gill]

Well Chris2597, with that new information about your sleeping, what are you going to do differently NOW so that you don't fall back to the same rut of not sleeping?

As I posted earlier, we have FIL @ 87 with alzheimer's with us... my DH's family (ie. he and his mother) will not hear of putting him in a home, doesn't matter what the emotional toll on us is... it's an unfair situation to say the least... but I've learned to deal with it & believe me, I don't lose sleep over it anymore.... For the most part I ignore everything but the healthcare issues. FIL will outlive me, I've already come to realize that fact... how sad is that?



Yeh, I second a support group on the Dis!

 

[Chris2597]

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.