Caregiver Lamentation

Wilted Daughter

Holiday blues and caregiver burnout are causing me to lament over my situation when faith, grace, and patience seem distance.

Since this is a full-time job without pay, I've been fighting for equal pay, breaks (i.e. vacation, days off) as one expects from any job. Although there are "things in the works" (i.e. paid family caregiver, respite options), I've been working on them for soooo long that they still seem soooo far off (running a race and collapsing a foot before crossing the finish line). 

I just need to hold on (weeks or month) until Medicaid approvals caregiver hours and paid respite stay. If the approval for caregiver hours comes first, I may afford a weekend out of the house while awaiting paid respite approval/bed availability. If the respite approval comes first, I can have the house to myself to clear my head, get myself together, but there is guilt associated with respite (mom being placed outside of the home). I need to overcome guilt tripping.

I'm between a rock and hard place and my mind has been working OT for 2 yrs on caregiver, POA, estate/house management, etc. with little to no thought for my future (only dread). 

mommyandme (m&m)

I understand what you are saying.  I understand the doom and gloom feelings.  This is so hard.

I’m very sorry you are feeling so low without a near enough solution. If I was able to come over and give you some time away, I would. 

When my kids were young I was part of a babysitting co-op, no pay needed, just swapping the care.  There should be a caregiver respite co-op. We could watch two or three dementia LOs so our fellow caregiver could get out, even for a couple of hours. 

ATK1

I am new to this forum so while I have no advice, just know I hear you, the other caregivers hear you, and know your pain. Considering government red tape and timelines, it is good to hear you may not have to wait much longer.

Guilt is normal, but carving out time for yourself will make you an even better and stronger caregiver. Taking care of yourself physically and mentally will only benefit your mom, even if she has to be away for a bit.

Those years of planning will resolve at some point, I bet you will be amazed how you did it all and what a strong person you are.

Tfreedz

While you are holding on for weeks or months, can you find someone temporary for a couple hours a week? We have had a good turn out from care.com and found someone to keep mom company for 2hrs 2X a week. It’s not that expensive and it is definitely worth it. Sometimes I feel too guilty to leave or have nothing to do but I leave anyway just to regroup my mind. Please look into something while you wait for a more permanent solution.

abc123

Dear Wilted Daughter, I feel like you and I are in the same boat and it's sinking. Please don't give up, you are accomplishing a lot, even though it doesn't seem like it.

Wilted Daughter

Thank you all for your responses. I do get out from time to time but getting out a few hours here and there is not enough (it's like recess). She doesn't require constant oversight but...

I need a vacation away from mom there is nothing more to be said! With the two options for respite...I'll see if I can plan it right and get time out of the area, and home alone for at least a week. Everyone needs time away for more than a couple of hours at a time.

Wishing you all solace in the new year!

socialmeg

Hello,

I am new here to this blog but not not new to being a caregiver. My mom was diagnosed in February of 2020 but I knew before that something was up. I quit my job and moved closer to her 2 years before that diagnosis as I could see she was clearly slipping and not in the typical ways of aging. I have siblings who chose not to see what was happening for the first two years I lived closer to mom, even after I reported to them that mom's mind was deteriorating and it was worse than I had thought. My issues at this time are more with family than the caring for my mom. It's exhausting and relentless but she isn't so hard to care for. I just didn't expect my siblings to let me bear this load seemingly alone both emotionally and financially. When the pandemic hit I became unemployed.....ouch. Everyone else kept working but my job was too risky, too much exposure to Covid and then ultimately not even an option (schools). No one seemed to care that I was not only grieving the loss of my mom piece by piece but I was also now financially strapped while doing it. I have a sister who is quite literally a millionaire and ironically she is by far the least involved physically with my mom's care....she sends her things. My mom wants "her people" though, she's lonely for them.  If everyone did their part it wouldn't feel nearly as difficult not to mention lonely, for mom.... and for me. I moved and thus left my support systems and my identity which was closely tied to a job I had for 14 years. My fear is that after my mom passes I won't  have a family anymore. I am so angry at all of them for abandoning me like this and not trying harder to spend time with our beautiful mother not to mention join me in the shared grief of losing a parent in this way. There is so much more to this story but it would be too long and difficult to try and even articulate. 

We are starting to discuss and plan the next levels of support and shockingly we don't agree on those next steps. I want a live in caregiver and for her to live with me....I have even volunteered to move (yet again) to be closer to the rest of them and thus make it easier for them to see her. Several siblings think an assisted living facility is better although they don't seem to realize our mother is on the edge leaning more towards memory care, maybe already there from what I've read on several blogs. They also don't seem to comprehend the sales approach to these places and thus believe everything they are told during a tour. I'm not saying these places are flat out lying, this isn't their mother though and they don't know her like we do....and..... let's just be honest, they are a "for profit" business. 

I am not a martyr, not professing to be one,  however I am willing to make sacrifices to make my mother's final chapter a time she feels safe, loved and cared for....with paid caregiver support mind you. I do not want to abandon her and put her in a place like that.  I feel so strongly that that is how she would feel and I have by far spent the most time with her and have had the deepest and hardest conversations with her. Her early life was so filled with abandonment and loss. She talks about that now more than she ever did. Those early memories come back to the forefront as many of you know. I am her medical power of attorney, not her financial POA so I can't make this decision even though I have been the main caregiver out of her children. (We have a wonderful caregiver now who goes to her home 5 days a week for 6 hours a day. She feels as I do too. A few of us fill in around that. Some siblings continue to do very little if anything though. It is not called out or spoken to either, even when their idea of  "help" seems to make things worse; for example sending a driver to pick her up and bring her to a home an hour and a half away and then cart her around to various events, have a bunch of people around the entire visit while basically ignoring her needs not to mention exposing her to Covid. She's boosted, but still.....) 

So for me, the loss of the family I thought I had weighs so heavy on me too. I've had my own health issues as a result of the grief and stress of it all.....and even that doesn't really register or ignite any change in them. I would like to have a family zoom meeting with an experienced  mediator/therapist type person, someone who can hold the tension of the situation skillfully without sweeping the inequities under the rug. Things need to be spoken out loud for all to hear..."what are you willing to do going forward, how are you willing to support our mother's care on a consistent basis"....one by one, share their answers and then document it. This kind of collaboration from her children on her behalf would make her sooo happy, probably more than just about anything else. She would want us to not just care for her but also care for one another. Why is that so hard? 

Ugh.....my thanks to any and all who read this post. I do know there are those of you here who have it way harder than me. I also wish this country had better safety nets for this beloved population....seems so heartless that we don't. 

Mr. Jones

Hi "Socialmeg" ,
I felt your 1st post was worthy of my attempt to acknowledge your forsight at "seeing" your Moms decline early, and making the sacrafices that you know your Mom would do for you.

When you discuss the sibling uninvolvement, and social isolation, and sacrifices you have and are making.... You have written what many of us caregivers go through. I got some liberation from 'that way of thinking' when I accepted that my siblings would not be helping. Then it let some of the weight of the 'abandonment' I felt.
 
I am 7+ years into caring for my Mom and  for some reason I thought I would be "recognized" and "honored" for my efforts and expenditures... But No.... 

This caregiving is either part of who you are, or a calling.      
In past generations, large families would usually pull together for their Mom or Dad.
Yes, Something in our society and humanity has been lost.

... My Mom is making a fuss in the background... Gotta wrap up...
Hang in there and be good to yourself... 
and do not give in to the isolation. This forum, and board is a good way to start.

Wilted Daughter

Hi Socialmeg,

Keep your head up as it was said ...caregiving for a LO is a thankless job. So, don't anticipate gratitude acknowledgments, especially from family members. Stay focused on doing right by your mom within your capacity. 

There may be free caregiver support resources in your area. Try searching:

Family caregiver support programs in your state;

usa.gov/federal-agencies/eldercare-locator (eldercare.acl.gov, 800-677-1116);

caregiving.org;

Alzheimer's Foundation of America (www.alzfdn.org); and

The National Institute on Aging: Alzheimer's Disease Education and Referral Center (nia.nih.gov)

For finding a therapist try:

psychologytoday.com look under therapist tab or search 'support for senior caregivers' in your browser 

*State/federal sources are the best places to start the search (most resources, funding, education...) These sources will narrow it to a specific location for resources

As for the family...Let Go and Let God! Do what you can do and don't overextend yourself...they may not be inclined to help if your doing all the work. 

One last thing...SMILE!!!