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After 3 1/2 years of being a f/t care-giver to both my parents (less my Father the last 8 months) - I finally decided that 1) I needed a break and 2)had to find employment outside the home as my job at home is coming to an end.

I was searching for a companion since the week before Christmas as my last one - stole money. FINALLY last week - the agency sent me a care-giver (I am working w/ 4 and nobody can find me one). I decided that I cannot only leave the home for 3-6 hours a week - and have requested a live in care-giver from 8:00 am Thursday to 8:00 am Sunday.

Thursday is my out of the house for work day - Friday is catch up on ALL my Doctors appointments that I've missed or postponed over the years - and Saturdays are MY DAY - whether its cleaning my side of the house - sitting on the couch and watching a movie - visiting a friend - attending a party - going to the mall or dinner or a movie - its is MY DAY.

Last week they sent her Friday/Saturday (cause she couldn't do Thursdays - so I missed my 1st "real" day of work". Friday I hung around all day - cause my Mother needs to get "used" to them before I can leave her alone. She seemed ok - I guess I have never been overly impressed with anyone except the "thief" - so there shows you my judgment. My Mother fires most people - over 20 in the last 3 1/2 years.

Last Friday was the get acclumated day. The care-giver was tired as she woke up at 4:00am and needed a nap. So she took a 2 hour nap in bed while I "hung out" with my Mother. She also provided me with a LIST of groceries that she would like for this week as I need to "feed" her. Last week I ordered out for her (cause she didn't like what we had in the frige for dinner) - which was chicken breasts, hot dogs, spagetti, soup etc. The list consistsed mostly of "frozen dinners" - lunch meat, bread and fruit (I only had bannanas) -

So Saturday evening - I ventured out and ran errand (this is last week) - went to the pharmacy - caught a quick bit to eat, the pet store, Walmart & Acme. Keep in mind whenever my napped (which was A LOT last weekend) - she would just sit and watch TV and talk on the phone.

So when I went out I told her I wouldn't be home until 10:00 - well I stopped in @ home at 7:00 - to drop off my Mother's medicine - and there the care-giver is in MY family room with her feet up on the coffee table watching an "on demand" movie and she had put my Mother to bed for the evening and gave her her bedtime pills (bedtime is at 9:00) in writing and verbally told. I told her this wasn't acceptable - and she said my Mother was tired - -and begged to go to bed. It's rare for my Mother to go to bed or even nap between 4:00 pm and 9:00 pm - but I will never say never - but usually its only a nap.

Ok - moving forward to this weekend. I kept her - cause really nobody can find me anyone else - and off to work I went on Thursday an hour after she arrived. I had a friend stop in at 11:30 am to make sure my Mother was up and eating lunch. My Mother was "resting" in the chair and the care-giver was no where to be found. My friend found her in the bathroom as she was taking out her hair weave. She even said to me when I got that she spent 4 hours taking out her weave.

Then my Mother was crying hysterically (after I came home of course) - cause she washed her hair in the sink (kitchen) - Now keep in mind when I came home Thursday at 4:30 - she said - oh I have been going CRAZY all day w/out tv - since you are home I'm going in the other room to watch it. So after I calmed my Mother down and gave her a nap - I told the care-giver please don't wash your hair in the kitchen sink. She got very angry and said - what do you expect me to do???? Your bathroom sink is TOO SMALL and I don't wash my hair in the shower cause then I get all my hair products on my body. I said well going forward when my Mother naps you can wash it in my kitchen sink - she said - no when you Mother naps is when I watch TV - oh boy!!! Then she said well I guess I will need to leave tonight - cause I don't want to upset anyone. HELLOOOOOOOOOOOOO - I feel like I need to tollerate this behavoir because there isn't anyone else and I cannot loose my job!!!! I spent an hour calming her down!!!

So I watched my Mother Thursday from 4:30 til bedtime at 9:00 (the care-giver went to bed @ 8:00 cause she was tired again) - then Friday morning - I said - I cannot believe I feel asleep at 10:30 while watching ER - I never fall asleep - that early - but she was jealous - that I could watch TV - hello she watched tv for 3 hours - I watched tv for 1/2 hour. Then Friday I ran some errands - and she had to take a nap while my Mother was awake cause she was bored. Then complained to me that she is too young to be this bored - oh boy - I've done this for 3 1/2 years - she has done this for not even 4 days total over 2 weeks and she is going to complain about being bored???

Now she was supposed to stay today - but they are calling for snow starting at 5pm. She needs to leave at 10:00am cause she doesn't want to get caught (she takes public transporation) - so I cancelled my plans for today - but the kicker is she wants to get paid $250.00 for a FULL DAY - hmmmmmm don't want to - but she says if she doesn't get paid then she is NOT coming back.

I feel really trapped. I do know that when she leaves my Mother will cry that she doesn't like her - cause she washes her hair in the sink or sleeps too much or is in my house too much. Are my expectations too high???

And the other kicker was - after I purchased her her list from last week for this week - she said that she does NOT like frozen foods - and requested steak, scallops etc - for dinner - I had her old list in my purse - and said isn't this your hand writing - she said - well I am not in the mood for that this week - oh my.

Does anyone else feel stuck????? Of the 4 agencies I have been working w/ since December this is the 1st care-giver and nobody has anyone else to send me to "fit my Mother's needs" - so if I get rid of her - I loose my job and am stuck in the house again indefinately.

Unbelievable!!!

Janet
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Janet
What a story. It sounds like fiction, but, I have read many many more just like it. As care givers we sure get trapped. How sick is your mom and how much attention does she require.
Is a day care center or assisted living facility something you have considered.
I sure understand your frustration, I had the same experience with my husband until I finally found a lady, that turned out to be an angel, that was so good and reliable.
Best wishes and good luck. Keep us posted.

Love and hugs to all you care givers
Sue
Hi Janet:

Honestly, from your description of this companion, it sounds as if having this person around is more trouble than help... I am sorry that you are having such a hard time finding good care-givers. And I would certainly not pay her for a full day of work, however, when she left at 10 a.m. The gal certainly has her nerve! I think, to me, that is just as bad as stealing from you...

Care-givers are supposed to be helpful around the house and do more than just be there. When we hired an agency while dad was on hospice, I would come home to a clean kitchen, the laundry washed and folded, and dad was well-cared for. If you feel you must keep her on until you find someone better, I would document everything and express my concerns to the agency that sent her out. That keeps you out of direct conflict with her. She needs to be reminded what her position is and quit taking advantage of you.

Hang in there Janet and keep after the agencies to find some good help if this person doesn't start working out for you. My thoughts and prayers are with you and your mother now that you will be blessed with some good help. You deserve it Janet!

Love and Hugs from Glenda
Thanks for your replies!!! Yes, care-givers have always been a sore subject for me - normally my Mother does not like them and fires them - I had 2 that stole from me and now this one - the ONLY one any of the agencies that I am working w/ can find.

Most assisted living facilites/nursing homes will not accept my Mother as her primary diagnosis is Chronic Parnoid Schziophrenia - although MANY of the symptoms of the mental illness mimic Alzheimer's for some reason these long term care facilities shy away from someone with a 60 year diagnosis of a severe mental illness.

As for adult day cares - My Mother has NEVER been one to leave the home. She has always been somewhat of a recluse. If I can get her out 2 times a year - I am doing a good job. I am lucky if in the spring/summer and fall I can have her step outside to enjoy the day once or twice. So leaving the house is really not an option for her.

The thing that I just DONT understand - is my Mother actually really likes this woman. Maybe her personality has changed some from the Alzheimer's - I guess maybe time will tell. What will prove to be a huge opening for me - in finding care-givers or even a facility to place her - is when I can get her primary diagnosis changed to Alzheimers instead of the schizophrenia. That is being worked on as we speak - but I've been advocating for this for the last 6 weeks - chasing my tail, but believe me - I KNOW I will eventually get it. Which is a far cry from where I have been the last 3 1/2 years.

Hugs,

Janet
And the saga continues............

I really did NOT like this care-giver, but it really was a way out of the house!!!! She was supposed to come tomorrow morning @ 8:00 so I could get to my p/t job.

At 7:30 pm the agency calls and said that she had an emergency and will not be there this week (Thur/Fri/Sat) and probably not next week and they don't have anyone else to send me.

I am still working w/ 4 other agencies and still NOBODY. I started back to work on February 1st - so far this is my 2nd call out in 2 weeks. I ONLY have to get to the office on Monday & Thursday's - why is this soooo hard. I feel like such a heel.

I have always been VERY responsible when it comes to work. I have always been very fortunate that the people I work for have been BEYOND understanding whatever I've had to go thru.

When I was 23 my Mother had a complete schzhiphrenic break - I was only employed with my job since November and had to take 2 weeks unplanned emergency time off in July. They were great. This has happened to me on and off thru the years - there was always unplanned time off because of a mental break, a broken bone, some illness. Then there were the schedule time off's - as they became known as Doctor Friday. But they were always great. When I worked - I really worked 60+ if not more hours - and brought work home.

Then I started working from home 4 years ago - and they have been great. When my Father was in his final weeks - oh don't worry about working do what you need to do -granted no work - no pay - but still - I was fortunate cause it wasn't no work - no job.

Now I have lucked out again - as I would be not be all too happy. I've only made it in 3 of my 5 scheduled days. My boss says it will all work itself out. I've been dealing w/ care-giver nightmares for 3 1/2 years, something tells me he is naive - cause I am quite certain it won't ALL WORK ITSELF OUT.

For the 1st time in FOREVER - I totally understand why people do not care for their loved ones at home - and place them in a facility. My Mother is actually easier now since her Alzheimer's diagnosis than she has been for the last 3 1/2 years - but I cannot leave the house. All I want to do is work outside of the house 2 days a week - catch up with ALL my Doctor and Dentist appointments and maybe have a day for myself to clean my side of the house - or catch a movie - or go to dinner or visit a friend or sit around and watch lifetime TV -is that REALLY TOO MUCH TO ASK????

I honestly don't know how people do this........

Janet
Hi Janet:

Gosh, I am so sorry that you are dealing with such a flake this time around. You are not asking too much! I do know it is hard to find really good help. It doesn't matter if it is care-giving or carpentry.

I think it is the best thing that you can do for yourself getting out and working part-time. Not just for the money per se, but the feelings of self-worth that we can so easily lose sight of when we are unable to get out and about to participate in the work world. Do not give up hope!

Have you tried looking outside of agencies and checking personal references at all. Or perhaps try volunteers such as Faith in Action to step in for the day that you need to go to work?

Hang in there dear heart. Do not give up the faith - you will find someone if you just keep seeking... My thoughts and prayers are with you...

Love and Hugs from Glenda
(((Janet)))

The saga really does continue...working with all those agencies and still not one decent care-giver. Makes me appreciate even more the one we've had with mom. Janet, what about talking to someone at a local church? Actually, that is where we found Urszula, my mom's aide. She did give us references ... her best friend was working for a friend of my sister at the time. Of course, it's always better to go through an agency where references are checked out, but seeing what you have gone through, I wonder if you wouldn't do better on your own?
I have to admit, I miss Urszula. Since my mom had no desire to do anything but watch TV, Urszula asked me if I minded if she did the laundry....MIND??? She also tidied the house every day, including vacuuming (I have three dogs) and washing the floors every other day -- believe me, I did NOT ask her to do any of this, she asked me and I really was uncomfortable. She wasn't hired for that, but I think she needed to feel as if she was earning her money, since mom didn't need all that much assistance. As far as me being uncomfortable, I did get use to it and now miss her very much!!
In any case, I just thought I'd mention the church...maybe a women's group within the church. Janet, I hope you can find someone soon... you NEED to get out,
Mimi
Thank you for your words -

I have tried agencies, local churches, Faith in Action, posting on local hospital boards, contacting nursing homes/assisted living facilities, Montgomery County Aging, family Doctor ect. Either I dont get a response, she doesn't qualify because of her income or mental illness etc. For 3 1/2 years - when one door opens another one shuts. For the 1st time I have agencies that are WILLING to work w/ me because of the Alzheimer's diagnosis - but cannot find reliable people or people period.

My Mother is easy these days (well most of the time) - she sleeps so much. I can understand their reservations a year or two ago, but now I don't get it.

I placed my 3rd phone call to an Assisted Living Facility around the corner from my house today. They are specific for Alzheimer's patients. I had called there about 1 1/2 years ago since schziophrenic symptoms mimic alot of Alzheimer's symptoms. They would not take her because she was not diagnosed. I called in December after her diagnosis and they said they probably wouldn't take her cause schziophrenia was the "main" diagnosis and she would need to come in for an assesment (yeah right get my Mother out of the house - funny.............)

Well today after a sleeplness night (caused by myself NOT my Mother) - I called again and insisted that I spoke to the Director - not the admissions office. I explained my situation from soup to nuts and she said at this point it sounds like more of the symptoms you are descirbing (sleeping all the time, waking in the middle of the night and eating breakast, confusion total confusion about medication) seems like the Alzheimer's in more on the front burner. Even though she still has schziophrenic symptoms - parnoid delusions, occasional audio & visual hallucinations - they can not say that is from the schzhiophrenia - could be the Alzheimer's so they are WILLING TO TAKE HER IN. I have an appointment for next Wednesdsay to visit. The Director said she would personally come to the house to meet my Mother. That the ONLY time she would need to come in is if I admitted her.

WOW - what a huge door opening that has NEVER happened before. I am at my wits end that I will NEVER find a dependable care-giver who doesn't quit or call out, or doesn't steal, or takes good care of my Mother or my Mother has delusions about. It has just gotten to hard and now that this door is open - it feels like my only option.

But then with the (little excitement) I feel comes a WORLD of guilt and failure. Why do I need to be selfish and get my life back. I really don't NEED to - I just want to. I would visit every day - I would volunteer for crafts - but I KNOW my Mother will never forgive me. I don't want to give up - but I feel like I have been backed into a corner where this is the only option that makes sense.

The really good things is - there is NO enterance fee - they check on you EVERY HOUR, all doctors are on site (for checkups), you can take them out to visit anytime, they have crafts, you can bring your pets to visit from home at ANYTIME - the only bad thing is that the people wander into each others rooms and my Mother doesn't do well at all in strange enviorments. A part of me feels like I am sending her off to die. Makes me sick to my stomach. I am so distressed about the care-giver issue and maybe placing her in an Alzheimer's facilty (f/t 24 hours a day 7 days a week) - I am drinking a glass of wine and smoking a pack of cigarettes. I don't think I have been this distraught since I found out my Father was terminal.

I still love my Mother, but I need some life back - no I want some life back - but that is me being selfish and the guilt is terrible. Plus I know I will be lost without her - cause taking care of my parents is really the ONLY life I ever really knew (not consistantly) - but ever since I was a child on and off.

Any thoughts on specific questions I should ask?

Please pray for me to do the right thing and make the right decision for BOTH of us.

Hugs,

Janet
Dear Janet:

There is nothing wrong with looking at all your options. It doesn't mean that you love your mother any the less. You have been a wonderful care-giver for her...

We can all relate to the mixed feelings that you are going through. There are a couple of articles written by Gail that might be helpful. Following are the links to these articles:

http://www.care-givers.com/DBA...ewarticle.php?id=286
http://www.care-givers.com/DBA...ewarticle.php?id=287
http://www.care-givers.com/DBA...ewarticle.php?id=678

Take care Janet and try to take some deep breaths. Do not feel as if you are being selfish to want your life back - you are not alone in your feelings... Good luck with everything you are going through...

Love and Hugs from Glenda
Thanks for the article links - I read them all and they really hit home. I guess the guilt never does go away.

I think the thing that gets me the most that I know that I am doing this for me and not her. And isn't it supposed to be about them? I am not a selfish person (well I try not to be) - I just want to be able to get out.

If I believed that I could find a dependable care-giver who wouldn't steal, or who would take good care of my Mother, or who would be dependable or who my Mother wouldn't have delusions about - I may not feel that absolute need to go this direction. 3 1/2 years and 21 care-givers later - I continue to keep ending up in the SAME boat with care-givers and finding them. Its tiring.

Besides my daugther she is the ONLY family I have left - I know I am not turning my back on her - but I am giving up - I am putting her away - somewhere that I do know that she will never been happy and only decline. Her perfect world is me staying in the house all day every day with her and having nobody over and no noise. That is when she is the happiest and always have been.

I will go look on Wednesday - but I am not sure anything will shake the guilt.

Janet
Oh Janet,
I do know how you feel. How I anguished over the same decision, feeling SO guilty, feeling so much like a failure. I'm sitting here, reading your posts and it is just breaking my heart - it truly is. Sometimes, it's so much easier to understand someone else's problems.
Janet, you are not a selfish person. You've given up your life for your parents. All you are asking for is a little time for you and that is not too much to ask. You have tried so very hard to find someone to come into your home and help care for your mom. You have done so much more than so many others would have done. I too viewed nursing homes as you, dreading to place mom there just knowing how unhappy she would be. Like your mom, my mom is happiest when her daughters are with her. What I didn't take into consideration was the social interaction of the NH...having others to talk to, or just sit with. Since it is geared for Alzheimer's they will have activities that are designed for them. I know, in the past, you have stated your mom doesn't like noise and doesn't really want anyone else around. Now that she has Alzheimer's, that may change. You really don't know unless you try it.
Janet, you deserve to have some time for yourself. As you said, you can visit as often as you like; you can bring your dogs over to visit with her and you can take her out and bring her home to visit. You could also work your part-time job and have a little "me" time, something you very much deserve. You have given so much of your life to caring for your parents ... it's time that you take a little of that time back for you, for your own mental as well as physical well-being. I wish you well,
Mimi

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