Topic: Fear of Caregivers

Hello:

My Dad has been brought home for outpatient hospice. My Mom is the primary caregiver, my brother stays from 9:00 p.m. until 9:00 a.m., and I take the shift from 9:00 a.m. until 9:00 p.m. I feel my Dad has only a few more weeks left.

Because of job responsibilities, this situation is not tenable for the term. We have talked to my 75 year old mother about having a caregiver here round the clock. My Mom is totally freaked out and scared about having a stranger in her house.

Am I wrong, or a bad son, for exploring this? My Dad's oncologist suggested it to give my Mom a break, but she is the type of personality that would still insist on being here even if there was a caregiver in the house.

Does anyone have any insight or suggestions for this situation?

Thanks in advance,
Stan

2 (edited by Darla Wed, 08 Jul 2009 11:08:16)

Re: Fear of Caregivers

Hi Stan,

Interesting that you should bring this up.  My parents are 82 and my sisters & I are dealing with this same issue.  I was brought to this site because my husband passed away from cholangiocarcinoma last year, now my  Dad has multiple health issues the most serious being chronic stage 3 kidney failure. They want to stay in their home, and my Mom is like yours. Doesn't really like all the at home care and wants to do it all herself.  She is wearing herself down & is no longer capable of taking care of everything. She too refuses to go anywhere and certainly would be there even with a caregiver.  We have looked into assisted living etc.  but they won't even discuss it.  You are not a bad son as we are not bad daughters.  We are just being realistic and looking out for their best interests.   

I don't know what the answer is, but just wanted to let you know you are not alone with this dilemma.  I too would welcome any suggestions or advice.  It is all so hard to accept.  I know I would probably feel as they do in the same situation, but hope I will be able to accept help if needed when the time comes.

Hopefully some of the good people here will have some helpful suggestions & advice for both of us.

Take Care
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Fear of Caregivers

OMG Steve. I had that with my parents. My dad passed at 93 and my mom is now 93 and a bit failing. Years ago I wanted them to get someone in so that they could stay in the house they loved but they would not hear of it. I think it's a great idea and sometimes we have to tell our parents that we are looking out for their best interests. Believe me when I say that your mom is not going to be able to handle this alone. I would find someone that someone else knows and is very reputable and just tell your mom, this is what we are doing so we all have the strength to get through this. Let her know its not permanent and that basically the caregiver is to see to it that your dad is comfortable and to ease things for the rest. Good Luck.  Been there done that!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Fear of Caregivers

Steve....it is always difficult making decisions for our parents because....they are our parents.  Perhaps, you can ease in another person by starting out with a few hours at night explaining to your Mom that she can get some much needed rest. But, making the promise that she would be notified if needed.  Or, if she would like, a few hours during the day to begin with.   Most of all I believe, someone will have to earn her trust and allowing your Mom to have control in her own house.  These are just my thoughts. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Fear of Caregivers

I can identify with your mother.I didnt even want nurses involved and wanted to do it all myself.I think you can get a rush of adrenalin in these cicumstances which can carry through.
  Having said that I think getting some sleep is important as you do run out of steam without catching up on sleep.I do think that a terminal condition where there may be very little time left is a different scenario to chronic health conditions and general failing .Do you have any other relatives or close friends who may be able to offer a few hours?
     My father died a few years ago and my husband died recently and although both experiences were devastating  they were quite different                                                                  Janet

6 (edited by tiapatty Tue, 07 Jul 2009 22:06:55)

Re: Fear of Caregivers

Stan,

Well, my 6 siblings and I cared for my mother but when she went on hospice my mother actually asked us to call the caregiver who helped care for my grandmother so it was someone we all knew already and were comfortable having in my mom's home. Perhaps you can see if someone you know can recommend a caregiver and your mother might feel more comfortable that way. Even though there were 6 of us, it really helped to have some hired help for those last weeks, when she started coming we were able to focus a little less on the medical care and more on our last weeks with our mother. Also, visitors were coming to see my mother but they also wanted to visit with us and make sure we were holding up and this helped in the pre-grieving process.

Patty

Re: Fear of Caregivers

Hi Stan, your situation is definitely shared by many & it's certainly not an easy one. My Mom, who was the primary caregiver or my Dad when he was fighting cc, suggested that perhaps social services may be of assistance. In my Dad's case, the oncologist recommended social services & they sent someone out to train Mom on how to change/clean Dad's bili cath site, change bandages, give meds, answer questions, etc., at home. This may benefit any caregivers that you have onsite. Mom also suggested that your local office of the aging/senior services center may have resources- specific to home health care aides, visiting nurses, individuals qualified to sit with/care for your Dad, etc.. Our local hospital also offers a service in which volunteers (or less medically qualified individuals) come in to sit with/read to/talk to patients.  In my experiences with such people, they are equally as beneficial to familial caregivers like your Mom, even if its just to share a coffee or talk about how Dad is doing that day, fears, etc.   I'd recommend background checks/letters of recommendation if you do opt for someone of this nature. Word of mouth, as others have suggested, may assist in locating you someone you know- that may be able to assist.... even if it's just to give you, your brother and your Mom periodic breaks (which are a must).

The greatest challenge may be your Mom's (natural and understandable) fears of bringing someone else into her home. It will not be easy, but breaking her in slowly may help.

Your family is in our prayers.

-Tess

Re: Fear of Caregivers

Stan....Just thought to share this with you, also.  It has been posted previously but can never be read often enough:

Caregvers Bill of Right


I have the right to take care of myself.  This is not an act of selfishness.  It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object.  I know the limits of my endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for just as if he/she was healthy.  I know that I do everything that I reasonably can do for this person.  I have the right to do some things for myself.

I have the right to get angry, be depressed, and express difficult feelings once in a while.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger.  (It doesn't matter is she/he knows they are doing it or not.)

I have the right to get considerations, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

I have the right to take pride in what I am doing.  And I have the right to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality.  I also have the right to a life that will sustain me when my loved one no longer needs my full-time help.

Author unknown.
National Cancer Institute
Support for caregivers

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Fear of Caregivers

Hi Stan:

I went through that with my parents.  Mom being sick and Dad too elderly and frail to do the necessary linen changes, etc.  I think he would have wanted either my sister or me to stay there 24/7.  As you know, this is hard even with us being retired.  There's cleaning up the place, cooking, changing and cleaning her up (shower, etc).  Then, there's doctor visits for both him and her. When it came to soiling her bed linen, it became too much.  Though I only lived a block away, I still went to bed dreading the ringing on my cell phone.  It was exhausting.  There was no time for quality time.

Maybe if you approach it to your Mom that the caregiver will do the things she can't do herself.  Like cleaning him up if he soils the linens, changes the bed, cleans the house up, cooks.  Then, she can just spend quality time with him.  She can take a quick break to go to the store.  Someone will always be there.  You will be able to go there after work and just spend time with your Dad, not run around doing all the other stuff.

Yes, we got someone to come in twice a day.  The caregiver was wonderful.

She knew when it was very close to the "time."  She came one day, and asked if she could say a prayer for my Mom.  The next day, Mom left us.

Yes, get a caregiver.

Marjo

Re: Fear of Caregivers

When I brought Dad to my home to care for him while he was receiving treatments,  I would bring mom to our house as often as I could.  She isn't able to take care of her house...not the big stuff...so I hired a cleaning service.  And specifically one person that came recommended to me by a friend of mine.  Mom had such anxiety that I told her I would be there the first time to go over things with the agency.  I talked with mom prior to hiring the service and I tried to get mom to express what she wanted to have done,  to hopefully empower her so she wasnt' feeling 'incapable'. 

The first meeting went so-so.  The agency is terrific.  Many people hire them for their elderly parents as part of their service is to prepare meals,  run an errand, and communicate with the children any oddities that may be observed.  According to mom, the house wasn't clean enough, they miss spots and she doesn't want them cooking.  OK.  We can work through that.  The second meeting I made myself available again, to work out the kinks.  Still just soso, according to mom.  The third meeting, I stayed with dad-mom didn't answer the door!  I tried to explain to mom that I couldn't take care of Dad, oversee my disabled brother's care, babysit my niece, work parttime, take care of my husband and my own home, and be there to clean her house too.  I told her I needed this help.  I was paying for it.  And she could manage it as she saw fit...again, trying to give her the power.  We ended the service.  I can only imagine how she would react if I suggested someone to come and assist as a caregiver...We are, in fact, dealing with this issue with the needed care of my husband's elderly parents two states away.  My father in law believes (at 85) he will be able to manage my mother in law's personal cares, the feeding tube and PT, etc.  My husband just returned from visiting there, and my sister in law will be arriving there to assist with care decisions.  Hopefully, my in laws will be receptive to assisted living arrangements.  I try to put myself in my parents/in laws shoes.  Must be a frightening time of life to let go of independance...to be in such a vulnerable position.  If only we could show them how much life will change for the better with a few tweeks of living changes.

I recently won a prize gift basket at our Chamber of Commerce's banquet.  Among my winnings was a three hour house cleaning gift coupon.  Think mom will let me use that on her house???   smile   another gift in that basket was a bottle of wine.  You may be sure I enjoyed that myself. 

Good luck, Stan.  You are a very considerate son, and your parents are very fortunate to have you and your brother.  You've been given some great advise here, and I wish you well.  As you can see, you are not alone.

Peace be with you and your family,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Fear of Caregivers

Jolene,

It  looks like many of us are dealing with these issues.  I think you should  use the cleaning coupon for yourself and I am glad that you enjoyed the wine.  You deserve it.  This all sure is not easy is it? I agree with you that if they gave it a chance they would realize it is for the best. Good luck to you & all of us.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Fear of Caregivers

To Daddy's Girl:  How about if you hire a caregiver for your own place to take care of your Dad; and when/if he's asleep,  to clean and cook the special meals for him?  Then, you'll have more time to do your other things.  Whew, you've got a lot on your plate.  Good luck.

Marjo

Re: Fear of Caregivers

Hi Marjo,

Things are getting easier to manage at this point.  Dad passed away a year ago this month.  My husband and I are renovating our house.  It was started a few years ago, before my parents became so ill.  Now, tearing up the flooring, etc. is both therapeutic and gratifying.  I've hired my cousin's 16 year old daughter to help mom with housekeeping ~ what teen couldn't use extra cash?? ~  Now I have to deal with the economy, the government and the cut backs on services for persons with disabilities  (my brother has cerebral palsy, is deaf/mute, and mild MR).    OK, time to knock out a wall!!!  Hahahaha

At long last, I feel like I'm coming around to my old self. I must say, this group has certainly saved me in my darkest moments.  You never know when some memory, good or bad, is triggered.  My friend's dad died; the funeral was yesterday.  Memories of my dad naturally crept up and I felt as though I was burying my father all over again. 

Stan:  how are you and your family doing?  Keep in touch.

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Fear of Caregivers

No you are not a bad son.  We buried my dad last friday. My mother definitley needed the breaks. we would break it up in shifts with family members and health care pros.  sometimes Moms /wives feel they are not doing their duty, but they need rest and recharge their batteries.  Mom would always say she wouldnt leave but when she got a break she would admit that she needed it.   Hang in there.   Dave