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Info Seeker
Posts: 2
Registered: ‎09-02-2012

Re: Alone Caregiver Barely Hanging On

Message 21 of 31 (696 Views)

Hi Demetria.  I can understand what you are going thru and often feel as though I am alone.  My 78 year old Mom has been in and out of hospitals since May of 2016 due to diabetes and then numerous UTI's. In October, they found a 6 cm mass above her left kidney. Her and my 85 year old Dad are both living at my apartment.  I lost my job due to excessive absence (resulting from Mom's numerous hospital stays).  I am the only child and sole means of transportation, etc.  Like you I am bi-polar and also suffer from high blood pressure & high cholesterol.  I have no insurance any longer and cannot afford to buy right now.  With that being said, I have put my health on hold.  I am trying to start my own company so I can work from home but it's hard.  Over the next few weeks, I have to take them to the following dr appointments.  Dermatologists for my Dad to have a cancerous growth removed, Cardiologists prior to my Dad having cataract surgery, biopsy of a 6 cm mass above my Mom's left kidney (last week was a colonoscopy) and then follow up visits with Oncologists after the biopsy.  Cataract surgery for my Dad's left eye, with right eye to follow a month later.  It's so hard to have a positive attitude as I get up and cook 3 meals a day, clean the kitchen after each meal, wash clothes, and somehow try and take care of me.  My parents are the same as your Mom, they do not want at home health care, only me.  I have been so angry lately and simply at my wits end.  I cannot even go and visit with friends for longer than a few hours and they are calling.  We must take care of ourselves though, somehow, someway.  Just know you are not alone.  Big Hugs from Texas!  Debra Largent 

Info Seeker
Posts: 2
Registered: ‎12-18-2013

Re: Alone Caregiver Barely Hanging On

Message 22 of 31 (750 Views)

Dear Demetria,

It's not just difficult to be the only one that a loved one will rely on -- it's impossible. Is there any way you can talk to your mom and tell her that you need some time to care for yourself too?  

 

I get that she might simply be afraid to be alone or with someone she doesn't know.  Could you discuss your situation with a caregiving agency and perhaps introduce a caregiver as a friend of yours?  Then that person could come over to "visit" you a few times.  As your mom gets more familiar with him or her, perhaps she'd agree to have her over without you. Then you could go to a movie or do something else. 

 

I agree with others here that it's important for you to care for yourself too. You can't be at your best with your mom unless you have the time to take care of you. Is your mom the kind of person who'd listen to you about your concerns for your own health. 

 

Keep posting, keep active in this thread.  This is something that you can do for yourself while you're with your mom. It's a start to finding your way back to helping you. 

Frequent Social Butterfly
Posts: 159
Registered: ‎05-04-2011

Re: Alone Caregiver Barely Hanging On

Message 23 of 31 (932 Views)

p221538r wrote:

Hi Demetria 

my name isPatti and I live in Pennsylvania with my 93 yr young father who has dementia and doesn't think anything is wrong with him until he has a bad morning and can't get out of bed.  Thank God that is only once in awhile.  My father is like your mother, stubborn and doesn't want anyone helping or in the house but me.  Then on a bad day he doesn't even want me here.  He asks me often "why are you here"?  I stopped saying "to help you, or take care of you" because I always got a smart mouth answer, so I just say " so that you can stay in your own home and keep doing the things you like to do".  It is odd that he doesn't want me here, but when I go to the store or an appointment I have (I am 62 and have arthritis and osteoporosis and fibromyalgia so I have lots of dr appointments myself ).  He gets mad when I have to go food shopping and could be gone 3 hours.  We live in a rural area so I have to drive half he to get there.  Or when I take 4 hours on a Sunday to spend time with my boyfriend which consists of helping me shop at the stop and we stop at our favorite restaurant to have an hour together.  Then when I get home I get yelled at like I'm a teenager.  I get lots of verbal abuse and meanness from my dad and it is difficult to take. We did have a psych nurse come out once a week for over a year but it got to friendly and all she was really doing were the vitals because he wouldn't listen to her anyway. He is the only one who is right about everything and everything.  I work full time from home for my employer of almost 18 yrs. but the caretaking has taken a toll on my health physically and mentally mostly mentally.  I try so hard to make him happy and entertain him he doesn't appreciate it one bit by the way I get treated.  I just went on short term disability at work, I have to try and wean myself off of Cymbalta because it is giving ME memory and cognitive impairment and I am jeopardizing my job.  Meanwhile I have pain all over my body and am still the caretaker and housekeeper.  I have only my boyfriend who is my rock but he lives  an hour away.  My sister abandoned us because my dad wouldn't go move in with her and she thinks I lied to her about me moving in with dad when it was a spur of the moment think and she wouldn't listen to the real truth.  Turns out she was only gold digging my dad.  She hasn't called him or come around for 2 years almost.  You can cry or complain to me or ask questions I  will be here to listen😍 Thanks for hearing my story


Hey Patti!

 

There are a number of caregivers here that have harsh, ungrateful, even abusive care recipients, and your dad sounds like one. I think that you can stand up to him and cut some of that off. Takes practice, and sometimes it takes a therapist as a coach to give you ideas about how to get him to stop that behavior. Some people are always right. I am rolling my eyes. So irritating. but when you live with them, and you are dependent on each other (you care for him, you live in his house) then it really does pay to work on the quality of the interraction.

 

If he starts bellyaching about your taking hours to shop and (oh the nerve!) have lunch with your boyfriend, you can say, I was shopping for us both, Dad, you're welcome, and then walk out of the room, or put on earphones. You don't have to be listening to anything, although perhaps playing some nice mellow music might be great. He can shout: LISTEN TO ME and you can say, if you're nice to me. I do a lot for you and for us, i don't have to listen to mean talk. 

 

Cut him off at the knees.

 

If you stop taking it he might stop dishing it out. And if he doesn't stop, stop listening. On go the headphones.

 

I also hope you have a good doctor. 

 

Hooray for your supportive boyfriend, and flexible job. 

 

I live in a rural area, too. an hour away from a grocery store. Oh the miles i'm putting on my rig.

 

Write some more. What are you trying? Does anything i say make sense?  Thanks for sharing!

 

Jane

Frequent Social Butterfly
Posts: 159
Registered: ‎05-04-2011

Re: Alone Caregiver Barely Hanging On

Message 24 of 31 (913 Views)

d386481c wrote:

Hi JaneCares,

This whole cancer thing has me kind of confused. After the radiation the doc said that since they caught it early, that they radiation shrank the mass some. Now she will need CTs and check ups every 3 months to make sure it doesn't grow or spread. That means she still has cancer right? 

 

You are right. It's comforting (if that is the right word) to know that I am not as alone  as I thought. 

 

To get through I am doing 2 things:

1.trying harder to take better care of myself so I can try to not be so resentful

2.trying to get a little life back by going back to meeting and participation in 1 of the several 4) volunteer groups that I was previously active in.

3.Texting here!

 

I've been able to FORCE my sister to come by and stay with Mom for 2 hours while I do #2!!!!

 

Thanks a lot for sharing!

 

Demetria


Way to go, Demetria! So glad your sister is helping you out. I hope she'll do this as a regular thing. Resentment is a low grade fever that drains you of energy. You don't have time for that!  

 

Sounds like they gave her radiation and will see what happens next. Since she is older, they did the least invasive, harsh treatment of all and are leaving it at that. Yup she still has it. But cancer has a way of growing slower in older people. The younger the person with cancer, the more aggressive the cancer, as a general rule. She doesn't have to treat it any more ever, at this point. She doesn't even have to go in for the 3 month tests. For what? It's incurable. The doctors can treat any symptoms. But chemo and/or surgery would probably do more harm than good.  So, she may be around a while. Best to pace yourself!

 

I am so not a doctor (i'd be skinnier and have a nicer car) but i worked with people with cancer for 20 years, and hospice too. I hope she has a good primary care doc who can answer your questions. Just know that testing for cancer or treating the cancer is OPTIONAL. And not because we want her to kick the bucket. In an incurable cancer, there is really an open question about whether treatment actually does any good.

 

Anyhoo, do take care of yourself. Keep talking here. Bunch of us listening and talking, too!  Have a great weekend, and maybe it's a holiday weekend for you. Enjoy!

 

Jane

Conversationalist
Posts: 10
Registered: ‎11-21-2016

Re: Alone Caregiver Barely Hanging On

Message 25 of 31 (688 Views)

Hi JaneCares,

This whole cancer thing has me kind of confused. After the radiation the doc said that since they caught it early, that they radiation shrank the mass some. Now she will need CTs and check ups every 3 months to make sure it doesn't grow or spread. That means she still has cancer right? 

 

You are right. It's comforting (if that is the right word) to know that I am not as alone  as I thought. 

 

To get through I am doing 2 things:

1.trying harder to take better care of myself so I can try to not be so resentful

2.trying to get a little life back by going back to meeting and participation in 1 of the several 4) volunteer groups that I was previously active in.

3.Texting here!

 

I've been able to FORCE my sister to come by and stay with Mom for 2 hours while I do #2!!!!

 

Thanks a lot for sharing!

 

Demetria

Demetria Carter
Super Social Butterfly
Posts: 685
Registered: ‎01-23-2008

Re: Alone Caregiver Barely Hanging On

Message 26 of 31 (716 Views)

I'm so sorry you're feeling this way - I can imagine how hard it is to be so solo in this caregiving journey. I'm lucky in that my parents and my sister were/are happy to have help as long as I'm coordinating it and making sure it's all safe and ok - they knew/know I wouldn't let anyone bad care for them. But many people are like you and struggle with this issue...

 

In my experience, eventually most family caregivers get some help because they just can't keep doing it all. It's just not humanly possible. In some cases people get help but they also remain at home - they don't leave their family member alone with a volunteer or professional caregiver - sometimes never and sometimes not until over time their loved ones feel comfortable with the new person. So you might think about that. 

 

Another thought: get help for yourself. If you need/want to be the one to do the hands on care for your mom, maybe you get help with your responsibilities and your life so you have less stress and more time. I find sometimes its easier to get help for me than find people who can actually care for my 93 year old Dad who has Alzheimer's and lives with me. So for example, I have a concierge who helps me with the mounds of paperwork and sorting mail, housecleaning, yard care, running errands meal preparation etc. 

 

I hope you get some relief! And eventually some help for your mom. You might express that you know she loves you and you love her and you want to be able to be there for her and you know she doesn't want to hurt you or cause you to have health problems so you need to work together and accept some help so that you can continue to be there with her over the long haul as much as possible. 

 

Sending you a big hug!!!

 

Take care,

Amy Goyer

AARP Caregiving Expert

Info Seeker
Posts: 2
Registered: ‎12-23-2016

Re: Alone Caregiver Barely Hanging On

Message 27 of 31 (722 Views)

Hi Demetria 

my name isPatti and I live in Pennsylvania with my 93 yr young father who has dementia and doesn't think anything is wrong with him until he has a bad morning and can't get out of bed.  Thank God that is only once in awhile.  My father is like your mother, stubborn and doesn't want anyone helping or in the house but me.  Then on a bad day he doesn't even want me here.  He asks me often "why are you here"?  I stopped saying "to help you, or take care of you" because I always got a smart mouth answer, so I just say " so that you can stay in your own home and keep doing the things you like to do".  It is odd that he doesn't want me here, but when I go to the store or an appointment I have (I am 62 and have arthritis and osteoporosis and fibromyalgia so I have lots of dr appointments myself ).  He gets mad when I have to go food shopping and could be gone 3 hours.  We live in a rural area so I have to drive half he to get there.  Or when I take 4 hours on a Sunday to spend time with my boyfriend which consists of helping me shop at the stop and we stop at our favorite restaurant to have an hour together.  Then when I get home I get yelled at like I'm a teenager.  I get lots of verbal abuse and meanness from my dad and it is difficult to take. We did have a psych nurse come out once a week for over a year but it got to friendly and all she was really doing were the vitals because he wouldn't listen to her anyway. He is the only one who is right about everything and everything.  I work full time from home for my employer of almost 18 yrs. but the caretaking has taken a toll on my health physically and mentally mostly mentally.  I try so hard to make him happy and entertain him he doesn't appreciate it one bit by the way I get treated.  I just went on short term disability at work, I have to try and wean myself off of Cymbalta because it is giving ME memory and cognitive impairment and I am jeopardizing my job.  Meanwhile I have pain all over my body and am still the caretaker and housekeeper.  I have only my boyfriend who is my rock but he lives  an hour away.  My sister abandoned us because my dad wouldn't go move in with her and she thinks I lied to her about me moving in with dad when it was a spur of the moment think and she wouldn't listen to the real truth.  Turns out she was only gold digging my dad.  She hasn't called him or come around for 2 years almost.  You can cry or complain to me or ask questions I  will be here to listen😍 Thanks for hearing my story

Frequent Social Butterfly
Posts: 159
Registered: ‎05-04-2011

Re: Alone Caregiver Barely Hanging On

Message 28 of 31 (917 Views)

 


d386481c wrote:

I am soooo tired. I am a 61 year old daughter/primary caregiver for my 81 year old mother who has lung cancer, kidney failure & diabetes. It's been 2 years. I'm alone. No one to talk to. No shoulder to cry on. I am so full. I have diabetes. I suffer from depression, sleep apnea, diabetes and I am bi-polar. 

 

My mother will NOT accept help from ANYONE else. NO agencies, services, etc. She is too proud and too private.

 

No one can solve this. I just keep going but it would be nice to sound off or just go someplace and scream!

Sorry! 

Demetria


Hi Demetria,

Thanks for writing. You see that you are in good company! Let me ask you, what's the status of her lung cancer? She's in her 80s, right? If she still has lung cancer, it's probably metastatic. I used to work in home hospice as a social worker. Without being too blunt about it, she doesn't have a lot of time. Unless, she was diagnosed very early and she's cured of that illness. 

 

If she's stubbornly insisting on you and only you, and you are agreeing to that, which is in fact your choice and not inevitable (martyrdom is NOT REQUIRED), then i hope you are taking your medications and using distilled water in your CPAP (i use one, too. I have diabetes, too. And i take medications for depression.)  I hope you are taking care of yourself. Put the oxygen mask on you before you apply it to someone else, as the airplane stewards insist.

 

Just saying.

 

glad you're here. what helps you get through? we all need tips!

 

Jane

Respected Social Butterfly
Posts: 1,815
Registered: ‎02-01-2008

Re: Alone Caregiver Barely Hanging On

[ Edited ]
Message 29 of 31 (871 Views)

Sounds really really hard!  I have a very "private" mother too and many difficulties to face every day.  Hang in there, one day at a time.

vita umbratilis
Info Seeker
Posts: 1
Registered: ‎09-04-2015

Re: Alone Caregiver Barely Hanging On

Message 30 of 31 (878 Views)

I know how you feel. I take care of my partner who is in a electric wheel chair. Her medicaid insurance through the state pays me to take care of her at home. A agency called The Whole person takes care of my paychecks which they help a lot. Yes you need to let out your frustration but do it in a creative way, It's tough to take care of loved ones. Hang in there.