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Hi @KennethC288232 :  Thanks for letting us know how you're doing, and no apologies for a long post!  A single day in the life of a caregiver can't be summed up quickly, let alone an update on a few months.  

 

What are your thoughts on some temporary respite?  Is a rehab facility in the cards for your mother at this time?  It seems she's in a cycle of hospital readmissions right now and you are doing some heavy-duty caregiving while she's wheelchair bound.  It may be "just what the doctor ordered" to give her the opportunity for some additional therapies to heal that hip while giving you the opportunity to take a break (with the comfort that she is safe with available staff 24/7).  Has this been explored as an option with her doctors or when she was discharged from the hospital?   

 

I'm sorry about your father's furtherance into Alzheimer's symptoms, also.  Like you said, no amount of preparation can truly prepare anyone to see a loved one go through this.  

 

It's tough going it with little to no help.  I hope you find some in-home or other respite solutions to give you a break and let you attend to your work, your life, yourself.  

 

Let us know how you're doing, and take care.

Amanda Singleton
All posts are intended to convey general information only and not to provide legal advice or opinions. The posting and viewing of the information in this community should not be construed as, and should not be relied upon for, legal or tax advice in any particular circumstance or fact situation. The information presented may not reflect the most current legal developments. An attorney should be contacted for advice on specific legal issues. Nothing written in this community is intended to create an attorney‑client relationship. An attorney-client relationship may only be established through direct attorney‑to‑client communication that is confirmed by the execution of an engagement agreement.
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Hi, wow where to begin with my latest update. Thanks for the information and kudos.

The young lady that was taking care of my mom for me quit, she just decided to not answer my texts and not show up. She had her hands full with her family but a little notice sure would have been nice. Anyway I got back in touch with someone who had previously watched my mom but she just comes twice a week.

I'm still trying to work out of town but my mom fell about a week ago and hurt her hip so I have to stay here with her, thus keeping me from making any money. I do some work on my laptop but it doesn't equate to what I make when I'm out of town, making finances difficult.

I brought my dad home for Memorial Day, and with his Alzheimer's he doesn't recognize me or my mom anymore, which you expect but still very, very hard to face when it happens.

Caregiving is extremely hard, and with taking care of both my parents it's very overwhelming. My blood pressure and stress level stays up constantly. And I may have mentioned I have two sisters that do nothing.

Mom has been to the doctor and hospital three or four times in the past month so between taking her back and forth there I have to wheel her around in the house until her hip gets better along with her meds, putting gel on her hip, cooking, cleaning, etc.

Sorry about the long letter, just needed to vent.

 

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Hi, wow where to begin with my latest update. Thanks for the information and kudos.

The young lady that was taking care of my mom for me quit, she just decided to not answer my texts and not show up. She had her hands full with her family but a little notice sure would have been nice. Anyway I got back in touch with someone who had previously watched my mom but she just comes twice a week.

I'm still trying to work out of town but my mom fell about a week ago and hurt her hip so I have to stay here with her, thus keeping me from making any money. I do some work on my laptop but it doesn't equate to what I make when I'm out of town, making finances difficult.

I brought my dad home for Memorial Day, and with his Alzheimer's he doesn't recognize me or my mom anymore, which you expect but still very, very hard to face when it happens.

Caregiving is extremely hard, and with taking care of both my parents it's very overwhelming. My blood pressure and stress level stays up constantly. And I may have mentioned I have two sisters that do nothing.

Mom has been to the doctor and hospital three or four times in the past month so between taking her back and forth there I have to wheel her around in the house until her hip gets better along with her meds, putting gel on her hip, cooking, cleaning, etc.

Sorry about the long letter, just needed to vent.

 

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@KennethC288232 wrote:

Hi, sorry for the delayed response. This is the first opportunity I've had to read all of the responses.

Thanks so much for all of the information, there's so much stress to deal with. When I was working out of town an ambulance had to come and take my mom back to the hospital after I had just spent three weeks at home because of her, the young lady I have that watches my mom when I'm out of town, and her mother being sick and keeping me from working. It's amazing how right when you think you're getting a little ahead you get set back three times as much.

Fortunately while my mom was in the hospital her case worker arranged a transport service to take her to and from dialysis as well as my cousin starting to help on weekends. That's a help so I don't have to pay the young lady to do it anymore.

Every day with caregiving it's like whatever you have planned for that day will change. Caregiving is hard and yes it's a choice along with having to make difficult choices. I worry about my health a lot trying to juggle everything. It stays overwhelming with a mother and father to take care of. I guess the thing I need the most as with most caregivers is some mental relief and "me" time.

Thanks for the support and suggestions.

 

Ken


Hey, Ken! Hooray for cousins and care managers! Woot!  Now that you've discovered that there are dialysis transportation services, why not ask the care manager what else is available that you didn't know about? As I've worked over the years in places like Washington DC, Silver Spring Maryland, and now, Lake County Oregon, I've discovered there are all kinds of services that are specific to the area, based on public policy and available funds. Montgomery County has a generous Respite Care program that is funded starting every July 1 and runs out of money in October. DC has homemaker services and so does Lake County Oregon, at least in the county seat of Lakeview, population 2300 humans and a few cattle, deer, dogs and occasional mountain lion that freaks everyone out.

 

I'd pick the brain of that care manager, after bringing her a box of chocolates or a bouquet of daisies. See what else there is. And you can always look up the 'area agency on aging' by putting in your zip code at eldercare.gov, then call and go pick THEIR brains. Why do it all yourself, and pay for services, when there might be something free or subsidized that will do the trick?

 

Please keep writing and updating. Your learning curve benefits all of us.

I hope Spring is lovely where you are, and that you'll get a chance to enjoy it.

 

Jane

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Hi, sorry for the delayed response. This is the first opportunity I've had to read all of the responses.

Thanks so much for all of the information, there's so much stress to deal with. When I was working out of town an ambulance had to come and take my mom back to the hospital after I had just spent three weeks at home because of her, the young lady I have that watches my mom when I'm out of town, and her mother being sick and keeping me from working. It's amazing how right when you think you're getting a little ahead you get set back three times as much.

Fortunately while my mom was in the hospital her case worker arranged a transport service to take her to and from dialysis as well as my cousin starting to help on weekends. That's a help so I don't have to pay the young lady to do it anymore.

Every day with caregiving it's like whatever you have planned for that day will change. Caregiving is hard and yes it's a choice along with having to make difficult choices. I worry about my health a lot trying to juggle everything. It stays overwhelming with a mother and father to take care of. I guess the thing I need the most as with most caregivers is some mental relief and "me" time.

Thanks for the support and suggestions.

 

Ken

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Hi @KennethC288232 :  Just to echo Amy and Jane, welcome to the community forum.  You're in good company here, and I think many of us would agree with your sentiment that unless and until you've been a caregiver, it's really hard to "get it."   Those of us who have lived the caregiver life can empathize in a different way.  Please reach out if we can help with any specific issues or just use the community as a sounding board.   All the best, Amanda   

Amanda Singleton
All posts are intended to convey general information only and not to provide legal advice or opinions. The posting and viewing of the information in this community should not be construed as, and should not be relied upon for, legal or tax advice in any particular circumstance or fact situation. The information presented may not reflect the most current legal developments. An attorney should be contacted for advice on specific legal issues. Nothing written in this community is intended to create an attorney‑client relationship. An attorney-client relationship may only be established through direct attorney‑to‑client communication that is confirmed by the execution of an engagement agreement.
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@KennethC288232 wrote:

Hi first time posting. I'm currently caring for both of my parents. My father has Alzheimer's and is in a nursing home, my mom is at home and has dialysis three times a week. I work out of town and have someone to care for her when I'm out of town. It is extremely overwhelming to be trying to do everything alone. I have to pay for her care when I'm not there and working and when I'm home I get very little rest because it's hard for my mom to get around, her legs are bad.

Caregiving is one of the hardest jobs in the world and unless you do it you really can't realize the toll it takes on you. I have two sisters that refuse to help do anything and it really bothers my mom as well as me sometimes. 

It's a constant struggle trying to keep bills paid and paying for outside care. And if I hear someone tell me to "hang in there" one more time...

 


Hey there, Kenneth,

Amy has shared some excellent ideas with you. Following along her comment about the estate business, I am worried about your family's fall out once your parents pass away. I know that seems a long way off, but my concern is that there might be a lot of legal kerfuffle about who inherits what etc, and the vulnerability of your financial situation. I'd hate for you to be spending your money on the aides: i hope you're spending your parents' money. And that they have a will that spells out what they want to have happen. Because, I've been a caregiver in multiple scenarios, and right now i'm a psychotherapist, and i have heard so many heartrenching stories about how families get torn apart and the lawyers get all the inheritance because legal matters don't get settled before the parents die. When one sibling does all the caregiving, there is a sense of resentment and entitlement, and it all gets to be a hot mess after the deaths. 

 

Not to add another stressor, Lord knows, but... i do hope that the financial and legal stuff is pretty airtight, for your benefit. Lawyers are expensive, but later, well worth the consultation fees if they can prevent more chaos in the future.

 

Echoing Amy's excellent advice on caring for yourself, perhaps you can afford a night nurse now and again to ensure you sleep all the the way through the night a few nights a week? A lack of sleep is so bad for body and mind.

 

I know it's more work on you to form a team but, have you been able to enlarge your caregiving circle beyond just you and the hired aides, at all? Amy relied on a team. When my sister had cancer, she used LotsaHelpingHands.org to organize transportation, doc visit accompaniment, casseroles, you name it, and it helped a lot. Just a thought. 

 

Right, 'hang in there' is a nice, pat, thing to say. Meanwhile, what would help you most right now?

Do write more. There are a lot of experienced folks in this caregiving forum.

 

All the best to you, truly,

Jane

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@KennethC288232 Kenneth you've really got your hands full - no wonder you don't want to hear "hang in there!" It really is hard for people to understand until they are in the thick of it. I cared for both of my parents and my sister very intensively over the past 10 years; I get it. Both my parents lived with me - Mom for just one year during that time and she passed in 2013, my sister died a year later. I managed their estate matters (emptying out my sister's house 2000 miles away from where I lived with my Dad took many months and many trips), and Daddy lived with me for 6 more years as he battled Alzheimer's. He died in June, at home here with me and my sisters nearby, and honestly I'm not anywhere close to "recovering".

 

I, too, travel a lot for work - isn't it so hard to be both a long-distance AND a live in caregiver?! 

 

I can tell you the three things that helped me the most, in hopes maybe they will be helpful to you too:

 

  1. I learned I can do anything but I can't do everything. I had to build a team - far beyond my family, and cobbled it together with a "concierge" who helped me manage my life (two hours and $24 of her time was worth a million to me!), some paid caregivers, my one sister whom I paid as a caregiver (it was her job), support from the VA, and so many other forms of support. 
  2. I started looking at taking care of myself as similar to my car. I decided it wasn't selfish to take care of myself - it was just practical. So I think about quick tank-fillers (sometimes a cup of coffee is all I can do but that can give me a lift!), premium fill ups (I gotta go to the movies sometimes and exercise once a week!), tune ups (a real break from caregiving when I'm not caring for anyone else or working - this is the hardest thing but once a year I tried hard to do this), and routine maintenance (SLEEP - #1 priority! exercise, eat well, go to doc appts etc.). I did my best and that's all one can do. 
  3. I paid attention to my mindset. I chose to care for my loved ones, and owning that was empowering for me. Even at my most exhausted and frusrating moments still, (dealing with estate and financial fallout of a decade of intensive caregiving) I remind myself that I am doing this because I want to - everything we do is a choice. Our siblings and others can make their own choices - we can't control them - but we can consciously make our own choices. I also realized that success as a caregiver, for me, was just about being there, beside my parents and sister, and doing my best day in day out. There is no perfect caregiver and we are never going to cure all the diseases or prevent every fall etc. Once I realized that I stopped beating myself up for not being upbeat, perfect and on top of everything all the time! 

I hope these thoughts are helpful to you. Is there anything specific I can help with? 

 

So glad you reached out - stay in touch!

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

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Hi first time posting. I'm currently caring for both of my parents. My father has Alzheimer's and is in a nursing home, my mom is at home and has dialysis three times a week. I work out of town and have someone to care for her when I'm out of town. It is extremely overwhelming to be trying to do everything alone. I have to pay for her care when I'm not there and working and when I'm home I get very little rest because it's hard for my mom to get around, her legs are bad.

Caregiving is one of the hardest jobs in the world and unless you do it you really can't realize the toll it takes on you. I have two sisters that refuse to help do anything and it really bothers my mom as well as me sometimes. 

It's a constant struggle trying to keep bills paid and paying for outside care. And if I hear someone tell me to "hang in there" one more time...

 

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