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Periodic Contributor

feeling overwhelmed

It all started fairly recently and now it’s avalanche of events that are swallowing me completely and I feel like I’m drowning and no one in sight to save me. My Mom has recently been put to a rehab with the Altered Mental State, diagnosed with dementia, and my Dad lives at home and has 24/7 home aid. I also hired help wit my Mom, so the woman comes and stays with her from 9am-6pm. Then you would probably ask why I feel so overwhelmed when I get so much help with my Folks? it’s the emotional factor that I’m dealing with their inability to do anything for themselves and me being put in the position of being their Health advocate and dealing with all aspects of their life, financial, doctors, medications, appointments, transportation to the doctors, etc. too much and it’s on a daily basis. Sometimes I do between 20-30 calls a day on their behalf and spend a lot of time trying to convince them that the course of actions I took is the best one for them. I’m really exhausted and need some emotional support. I feel like the burden is too much for me to carry and it’s breaking me. I really need help.
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Periodic Contributor

Unfortunately, nothing in CT. But I’ll keep looking and researching. 
Truly what kills me is no matter how much I do for my Mom I can not spare her the suffering she’s living ever day of her life. We’ve seen so many doctors for her abdominal pain and still no diagnosis and pain killers are not much of a help. As I probably mentioned, she has a Dimentia and while she is in the rehab it’s hard for her to explain her pain to the attending doctor. She calls me several times throughout the day asking and pleading to help and to bring her home. Her voice is so weak and it feels like she is fading away from all this pain and suffer and I feel so guilty that I can’t help her. The doctors say that her pain is related to behavioural and her mental state is driving her to this predicament that she is in. They put her on antidepressants and anti anxiety meds but it’s not making any difference so far. I feel like she is slipping away and I’m just watching it all happening in front of my eyes. But what will I do if I bring her home?  My Dad needs to go 5 times a week to do Radiation treatments for his prostate cancer. I can’t leave her home alone without any help while my Dad is accompanied to his appointments by their home aid. I feel like I’m between the rock and the hard place. Feels like I’m sacrificing one parent to let the other one live. The whole situation with my parents just terrible

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@Yafa I volunteer with Daughterhood who have Circles in a variety of states/places helping women connect and talk about this role. You can see if there is one in your state, or see if there is one who may connect virtually that you can join to know you are not alone in the overwhelming-ness of this journey. Hang in there, you are doing the best you can. https://www.daughterhood.org/new-circle-page-2/

Jean Ross, RN
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Periodic Contributor

I will definitely look into it. Thank you so much!

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Periodic Contributor

Unfortunately, nothing in CT. But I’ll keep looking and researching. 
Truly what kills me is no matter how much I do for my Mom I can not spare her the suffering she’s living ever day of her life. We’ve seen so many doctors for her abdominal pain and still no diagnosis and pain killers are not much of a help. As I probably mentioned, she has a Dimentia and while she is in the rehab it’s hard for her to explain her pain to the attending doctor. She calls me several times throughout the day asking and pleading to help and to bring her home. Her voice is so weak and it feels like she is fading away from all this pain and suffer and I feel so guilty that I can’t help her. The doctors say that her pain is related to behavioural and her mental state is driving her to this predicament that she is in. They put her on antidepressants and anti anxiety meds but it’s not making any difference so far. I feel like she is slipping away and I’m just watching it all happening in front of my eyes. But what will I do if I bring her home?  My Dad needs to go 5 times a week to do Radiation treatments for his prostate cancer. I can’t leave her home alone without any help while my Dad is accompanied to his appointments by their home aid. I feel like I’m between the rock and the hard place. Feels like I’m sacrificing one parent to let the other one live. The whole situation with my parents Just terrible. 

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AARP Expert

@Yafa I'm so sorry you and your parents are having such a rough time. It's so much to deal with on every level - emotionally, physically, mentally. I hear you.

 

I can relate. I cared for both of my parents and my oldest sister at the same time - my parents were in the same place and my sister was 2000 miles away and I was working full time, traveling for work...it really does get overwhelming! But the part you mention - the emotional and mental strain of being their advocate and making decisions and explaining and the gazillion phone calls - that is incredibly depleting. 

 

I always felt like I'm basically living multiple people's lives! We have our own lives and all of the complications of that - our health, home, work, relationships, animals etc. and then we are in a situation where are doing all of that for another person - and sometimes multiple other people! I'm here to tell you it IS a lot. Of course it feels overwhelming! 

 

On top of that the emotional aspects of loss, of seeing our loved ones change and not be able to manage their lives - it's a lot to deal with...

 

Here's what I learned:

 

1) I can do anything but I cannot do everything! I tell people this a lot because once I accepted this fact it helped me deal with it all. 

2) Caregiving is a lot of giving, giving, giving - we give it all and that can leave us on empty. My car can't run efficiently on an empty tank (it can't run at all when truly empty!) and guess what neither can we.

 

So I learned to do things to fill back up.

  • Little things - quick things are mostly what we can do when caregiving. A cup of coffee, calling a friend, connecting online, buying yoursself flowers, meditating or practicing mindfulness, petting the dog... you are the expert on what fills you up. 
  • Premium fill-ups - a support group meeting, a movie, dinner with a friend, time with loved ones, quality time with those we care for, exercise class, creative class, a walk...again you know what's best for you. 
  • Tune -ups - periodic time away from caregiving - I mean you are not caring for anyone else. Yes, you may be doing some phone check-ins but primarily you have a few hours, a day, a weekend, a few days or preferably a week or even two - when not up to your eyeballs in caregiving. This is the hardest to acheive. So start small. Consciously take breaks for an hour or so here and there. 
  • Routine maintenance: Sleep. Sleep. Sleep. That is a must. Eat well, exercise, go to your doc appts. Do the things on a regular basis that keep you sane, healthy and able to get up and go. 

I share these because this is literally how I got through more than a decade of intense caregiving or multiple family members!

 

In addition to this online community, we also have a Facebook Group that I moderate - be sure to join there are more than 7000 caregivers there and always someone to give you support, advice, understanding etc. 

 

You can also try to find a local in-person support group. I'd start by calling your area agency on aging and ask for a list of local caregiver support groups and any other caregiver support programs they know of. You can find your area agency on aging by using the Eldercare Locator.

 

I got through the hardest years of my life, and I feel sure that you will too. The one thing we can be sure we can be successful at is being there - showing up for our loved ones and doing our best. You don't have to be perfect or have all the answers or fix it all. But you are there and you choose to care - please feel good about that! That will nurture your soul and keep you going! There are millions of elders who have no one looking out for them and it's not because they don't have family. Not everyone steps up like you are. 

 

You are resilient! 

 

THANK YOU for all you are doing for your parents! YOU ROCK! Seriously. Hope to see you here again and in the Facebook group. 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

 

 

Contributor

You are describing a lot of caregiver responsibilities here. It's good that you recognize that you need some support. You stated that your Mother is in a rehab. Do they have a support group for caregivers? Check with the social work staff to see what is in place to help you be the caregiver you want to be be for both your parents. you are right, caregiving is so stressful.  I noticed that you did not mention anything about your own/personal life. You may be feeling the stress of wanting to take care of your own life while becoming a great caregiver. Suggestion? Find a caregiver support group and learn from their experiences. There is never enough time to do it ALL. Be kind to yourself and find your support team.  

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Periodic Contributor

I’m trying to do small thing for myself not to go crazy completely. Without my daily walks or a few minutes of exercise I wouldn’t survive. So thank you for your kind words and understanding 

Periodic Contributor

I was looking for the caregiver support group that is why I posted my message. The rehab doesn’t have any support groups therefore I’m on my own. I’m retired and my personal life is non existent at the moment. It’s all revolving around my folks. My Dad is undergoing radiation treatments for his prostate cancer and he is very fragile and weak. And my Mom is really not comprehending his situation and only complaining about herself and she is begging me to let her go home. But if she does. He will disrupt his treatments and it will be a complete disaster. So this is basically it what is going on in my life. Very sad

AARP Expert

Hi Yafa! 

The AARP Family Caregiving group on Facebook is super supportive and responsive: almost as good as an in-person support group. During covid19 restrictions its harder to find groups in person. I have a couple of other ideas, too. Take what you like and leave the rest. Amy's suggestions are so on point. and then you could...

 

Consider hiring a geriatric care manager. I used to work as one. I am also a caregiver, and a social worker. We would receive calls from desperately over-stretched family members who couldn't make one more call, couldn't stand one more sick aide who had to be replaced 30 minutes ago, attend one more doctor's appointment. Here's an article about them and what you could expect: https://www.aarp.org/caregiving/basics/info-2020/geriatric-care-manager.html. You can meet with the agency near you that provides this service and decide what you want to delegate and what you want to hold onto. I used to hire and fire aides, choose agencies, take clients to appointments, pick up prescriptions, visit them in assisted living. One client kept getting evicted from very ritzy places: i figured out what the issue was and found a place with a better fit. This is not a cheap service, but if your folks' can afford 24/7 care at home, perhaps even a few hours help each week would be a relief.

 

The other idea is to consider when hospice care is appropriate. Your father is fragile; he's getting daily radiation probably to a bony metastasis of a cancer, which would hopefully prevent pain. And after that, his comfort, and eventually  your mother's comfort, is the point, correct? People actually get better, stronger, in home hospice because their meds have been pared down to essentials, they are not being schlepped to this or that specialist, and they can take a pretty drive (with someone at the wheel) or just nap with their cat. Doctors know how to discuss the 'goals of care.' What are the goals of his care? And hers? Home hospice is covered by medicare, the nurse and social worker come to the home, a medical director usually visits once every 3 months, and if considered medically appropriate (by medicare), people can be on home hospice for years. A thought.

 

Go on over to the facebook group and share your thoughts. Think about what Amy has suggested. Take care of yourself before you yourself get depleted and ill. We are with you in spirit, and respect all you are doing for your parents very very much.

 

Jane

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Periodic Contributor

Thank you for your valuable advice. I will definitely look into it 

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