Coping with caregiver stress?

Langley

Hey everyone. I'm a caregiver for two elderly people I live with, one with Alzheimer's (grandma, 99) and the other with chronic pain and limited mobility (mom, 74). I'm 29 (my parents had me at a late age) and I feel awful all the time dealing with this on my own. I recently learned about "caregiver stress syndrome" and the description fits me perfectly. Over the past few months, my sleep has gotten worse, I feel constantly tired and anxious, and I suffer from stress-induced headaches and nausea all the time. When I look at my journal and see the words I use to describe myself and my mood, some common ones are "drained," "overwhelmed," and "about to break."

I know the best thing is to look into long-term solutions, and I have been trying to do that, but I was just wondering if anyone had tips for short-term solutions for dealing with this kind of stress. Right now I haven't really been able to do anything for myself today because I just feel so frozen in place. Caregiving takes a lot out of me and I really do feel like I'm about to break... I've been making mistakes more often than usual because I feel like I have to do so much at once (I break things or lose track of what I'm doing because it's too much at once). I just never feel well mentally or physically anymore and it's incredibly hard to cope with everything.

LicketyGlitz

Some of the strategies that helped my journey, Langley:

• Dementia day centers for a mid-day break for myself. Sometimes run by the local parks department which made them even more affordable.
• In-home caregivers (at one point just a single afternoon a week person from an agency - eventually we hired a 4-day a week part-time live in privately)
• Socialization for my mom and myself: children's plays, dementia art programs (Opening Minds through Art, which is a national program, and our local Alz Assoc and art museum teamed up for a couple of dementia specific programs), community events like any arts in the parks offering, senior center programs and gatherings (def hit up the senior centers, they got lots of old people stuff going on that may be just what you and your mom and grandma are up for!)
• And friends, friends, friends to vent to, and hear tales of lives outside of caregiving. We would either zoom with wine after mom would go to bed, or I'd invite them over for wine and join them in the back yard after mom would go to bed! That might be the single most important thing was friends to laugh with and commiserate during those really hard periods.

I hope maybe one of two of these will work for you and your situation! And check with your state agency on aging and disabilities for options in your area for elder socialization/caregiver support.

Langley

Thank you for the suggestions, I appreciate it. Some of them are things I've already tried that haven't worked out. I probably should've mentioned that my grandma's Alzheimer's is severe and she's also really aggressive so having an in-home caretaker hasn't worked out. My mom would be able to do some activities in terms of still having the mind for it, but it could be difficult physically (she can't do arts and crafts because her hands are constantly shaking - it's not Parkinson's even though that's what she thought it might be but the doctor said it wasn't). As for my grandma, she's not really aware of much around her anymore so sadly I don't see those types of activities as being possible, plus she's bedridden. I really wish we could've done more things like that back when her Alzheimer's wasn't as bad.

I do have some good friends, sadly they all live far from me though, but it's so true what you said about friends being important during the hard parts even if they can't physically be with me. And yeah, luckily Zoom and similar things exist.

I have to look into caregiver support in my state more. Thank you for mentioning that, too.

May flowers

You have a lot on your plate - I cannot imagine caring for two people, just one is overwhelming at times! 

As for your grandmother, who is aggressive, some here have suggested a Geri-psych doctor to help get control over aggressive behaviors (if you haven’t already). Getting those under control may help with getting a caregiver.

I’m sure the docs have already looked into causes of your mom’s hand shaking, but Tardive Dyskinesia can be caused by certain medications and something to check. For example, my FIL had it bad when he was on Risperdone, to the point he couldn’t feed himself or hold a cup. It completely resolved when he came off it. Some meds are listed here: https://www.medscape.com/answers/1151826-4254/which-medications-may-cause-tardive-dyskinesia-td

 In addition to local resources, keep reaching out to folks here. The caregivers are all ages and walks of life and can relate (even when friends can’t). I hope you can get caregiving help. I have a retired nurse who basically just sits with my FIL and allows me some free time - she doesn’t do much in terms of hands-on care, but it’s enough to let me do some chores, work in the yard, or take  a nap!

May flowers

More devices that might help your mom https://essentialtremor.org/resource/assistive-devices/#tremelo

mommyandme (m&m)

Has your grandma received an official diagnosis? Have you had a hospice evaluation done for your grandma? Since she’s bedridden I’d imagine she’d qualify quickly. Getting hospice on board is not a death sentence nor does a LO need to be six months til death.  Dementia is a different animal for hospice.  My moms been with hospice for over a year and I can still transfer her out of bed. They could be an added level of support for you and yours.  Also they have a social worker that may have some resources for you. A clergyman if that’s something you’d like.   The CNAs can come in and bathe your grandma.  They usually have equipment and toiletries to offer.  They order meds and have a nurse come at least once a week. The hospice we have also has volunteers for caregiver respite so I use that a couple of hours a week.  Medicare covers everything.  If you move your LO to a facility, hospice will move with her. 

You must take care of yourself.  I’m so sorry that you are experiencing this life at your young age.  

jmlarue

Will second the suggestion from Mommyandme. Hospice should be the first thing to look into for your Grandma. Go through her doctor and ask that he/she refer her to hospice. Keep in mind that there are often several choices of hospice providers out there. You might find one easier to work with than the others. Have at least an introductory discussion with as many as you can. They'll do an in-home assessment and then discuss a care plan with you. Take advantage of everything they can offer you, including the respite care, help with bathing, changing linens, managing medications, incontinence supplies, hospital equipment, whatever. Don't say "no" to anything. If you're not sure if it will be helpful, tell them you'll take anything on a trial run. Once you get the hospice in place, they should be able to help with the medications for her aggressive behaviors. Remember too, that the hospice services will follow her if she needs to be placed in a skilled nursing facility. Hospice services can be a real lifesaver for the caregiver and compassionate care for your loved one. It should make things a little less overwhelming for you.

sandwichone123

You'll find a lot of good advice here. In addition to that, you may be interested in an app called Amaru. I read about it in an article, and it's a virtual pet that helps teach/support self-care behavior. It's free (with paid options) and doesn't take a lot of time.

https://www.sixwingstudios.com/amaru

I have been enjoying it, for a week or so, and it seems helpful.

LittleVolcano

I feel pretty desperate at this point too. I try to find things that make me laugh. I play puzzle games (or do jigsaw puzzles). I try to get massages. I play sports. Most recently I've been looking into Reiki. I know nothing about it, but it's helpful and healing for many (and a good practitioner can do it remotely from anywhere). I found one near me who has good reviews and reasonable package prices so I'm going to talk to her more tomorrow about what this entails. Also, I enrolled in free dementia caregiver survival courses (over Zoom) through my work. They've been helpful not only for the information but the camaraderie with the other classmates. Sometimes just talking to (and laughing with) others who get it is enough of a boost. I also come here and read other people's posts. I feel like we all lift each other up from afar. Big hugs to you and everything you're going through. I'm a secondary caregiver of one person (my Mom), so I probably have more time than you, but some of the things I mentioned take very little time (Wordle comes to mind. I do that every day and it takes probably less than 10 minutes). More quick stuff: Reading the Good News Network (it's good news only from around the world). Watching videos on The Dodo (sweet and amazing animal rescue stories). Check out "Dogs Annoying Cats with Their Friendship" (video) on Huffpost (never fails to bring laughs and happy tears for me). 

...and organizing! I found a small shelving unit at the thrift store today and turned our "dog stuff cabinet" from a secret pile of chaos into a functioning, tidy...well...cabinet of dog stuff. (one of the things that's taken a dive since I started caregiving more is that my home is constantly a mess. Having even one organized space in our tiny rental has become my lifeblood.

And thanks so much for all you're doing. I hope you find something to give you some energy back. I know it feels impossible when you're in the thick of it. More big hugs.

JAlzh

Hi, I'm new, so I hope this is appropriate. I'm looking for URGENT ADVICE! 

If anyone can give me any quick advice tonight. I'm really struggling.

Last friday my mom agreed to do some autonomic dysfunction testing and a nerve conduction velocity test tomorrow at this male neurologist's office. A female neurologist at the same location ordered the tests as she said, that we have to rule out an autonomic dysfunction issue that may be causing my mom's low heart rate before she may/may not get a pacemaker.

I show my mom a couple pieces of paper, she has severe cognitive issues, (dementia, alzheimer's, primary progressive aphasia, memory??), Today, it's like she didn't understand anything I was saying she said "the test is for you." Her wording was confusing, did she mean the test is for me to do, or she won't do it, because the test is to help me? My dad also suddenly says about 4pm today we won't do the tests, as the autonomic tests is a true money maker, and cause the neurologist says he's the only one in the whole state that does the "experimental" autonomic tests therefore he's nuts and not to be trusted.

I pleaded with them for 3 hrs and got them to agree to do tests.

Then I read email from Dr. and he cancelled autonomic tests at 930 am tomorrow. In which we have to leave house about 8-815 am, so there's little time for the doctor's office to open tomorrow to ask why he canceled the tests. The secretary just says, the male doctor said she should get the pacemaker and then reassess for an autonomic disorder. But this defeats the whole purpose. Is there an autonomic issue that needs to be treated, that may prevent needing pacemaker.

After all the pleading, and my parents changing their mind about these tests, I think dad is getting cognitive issues as well as he is showing lack of understanding on many issues, what do I tell them tonight. Say it's canceled and eliminate any chance of ever doing the autonomic test and just go for the nerve conduction study at 12pm,

Or say there's a problem with test and say I should call dr at 8 am in case they can do some of the tests? and they should be ready to go

Alzheimer's assoc was not much help today cause they said their usual techniques don't work, cause my dad would get in the way of therauputic fibbing?

Please advise. This is so stressful for me, when I believe these medical tests are important before she gets pacemaker. And tomorrow was only shot to do it.

JAlzh

Plus, you can sign up for programs like Luminosity, fun brain games that keep us sharp!

JTB for Peg

Hello, I have some resources that we were using with my mother in law that may benefit another family. We have electronic door chimes and a Personal Emergency Response System with 2 way voice pendant communicator. We no longer need either device, they are both still in the original packaging with all directions included. We are not able to return them but could be very helpful to a family who is still caring for someone at home. I am happy to share them for free. I live in Southeast Michigan. Please let me know if these resources could be of help. 

please reach out for photos or additional information. 

thank you 

It’s a Dry Heat

Self care is so important for caregivers! I recently joined my local Alzheimer’s caregiver support group through the Alzheimer’s Association. It’s good to have a group of folks who understand what you’re experiencing, to offer solutions that have worked for them and to share resources. I also agree that hospice can be beneficial as most offer services you are be able to utilize and may offer respite care to provide caregivers some much needed time for themselves to recharge.

toolbeltexpert

For four weeks I have been in zoom meetings for caregivers. It is focus strictly on caregivers. It has been helpful to learn some communication techniques. I put in a plug for this forum as it has the real hands on experiences that work.

mbyrne30)

I’m a full time caregiver for my 89 year old father with dementia. He moved in with me after a bad fall. I fell your pain! Most days I’m stressed with the worries of caregiving. Doctors appointments, PT and OT, breakfast, dressing and showers. Wow!!! How to manage my time? And my dad’s wife and her family always on my back. Some days are overwhelming for me. When do we as full time caregivers get a break? People don’t realize that telling us we support you and you’re doing a great job isn’t enough. If others want to really support us they could give us a day off. I’d love to wake up in the morning and say to myself, “ what am I going to do today?”

jmlarue

Quick question - is your father a Veteran and receiving any VA disability benefits? If so, as primary caregiver, you may be able to be paid a monthly stipend and also qualify for a respite caregiver to give you a break. Is you Dad's wife incapable of providing care for her husband? Just curious why all the care is resting on your shoulders?

mommyandme (m&m)

JAIzh,

You might want to start a new post with your concerns so readers will see the new post.  Sometimes posting an important question within a different topic will be overlooked. 

Welcome, but sorry you’re here.  I have no advice to share on your issue.