So overwhelmed, I feel like I am going to break.

LongBee2021

To make a long story short, placing my dad in a facility is not an option at this time. There is no one else to care for him except me and a paid caregiver. I am so overwhelmed and stressed thinking about living another year like I have been. I have a care giver during the day when I am at work and I will be increasing the number of hours the caregiver works, but still it's a lot on me. I am home 99% of the time. I miss all social gatherings. I can't go to the gym or to dance classes. I did get a treadmill so I can at least let our some stress on that. Again, moving him is not an option at this time for several reasons and I have an at home caretaker for him. 

What are some ways you self-cared? How did you get through this time? I'm looking for perspective I think. So much is in limbo. So much in unsure. How did you keep yourself calm and centered when you went though caregiving for a loved one? 

M1

Long Bee, are his children/your parents not involved?  I know family circumstances can dictate that things fall to a grandchild, but it's still kind of unusual.  Do you have power of attorney for him?  I hope so.  If you haven't done so, you might think about calling the Alzheimer's Association hotline, 1-800-272-3900.  This is a free service 24/7; ask to speak to a care consultant.  They might could help you think through your options.

MimiMinder

If you could use some of that increased, paid caregiver time for self care, it might have tremendous benefits for you. I recently took lessons in a new to me sport (Pickleball) and it was so incredible to lose myself in the activity and not think about dementia land for a period of time. Making sure your social/emotional/physical needs are addressed - maybe not totally met, but not entirely neglected either - would be my advice. Keeping ourselves sane and healthy is super important!

LevisHouse

LongBee - I am getting better at this myself, but it isn't easy, is it? Caregiving for someone who has dementia is incredibly lonely - I wasn't prepared for that. Add the pandemic on top of it and you've got a really crappy situation. I really don't have any great advice, other than sending a reminder that it is important to take time for yourself everyday, even if it is just a quick walk around the block. And find a friend who will not only listen, but carry on a conversation with you - I have a couple of friends I can count on for this and they make a huge difference. And check in with this forum - it helps me a lot to learn from others.

abc123

Dear LongBee, In the past few years I have missed some social gatherings that were very important to me. Sometimes there is no way around it. I have started putting these events on my calendar. I make it a point to make plans for my LO so I can attend at least two functions a month. It keeps me sane. PLEASE try to do the same. Caring for our families is extremely important and I respect you for being dedicated to your dad! Life is also meant to be enjoyed. We all need a way to reconnect with life and with ourselves. Prayer time helps me, even if it's only 5 minutes. I have a bird feeder outside my kitchen window and find much happiness watching the birds. And music feeds my soul! I love my plants! Last night I watered my plants at midnight in 35 degree weather. Find what works for you.

Cyndisaunt

I have invited friends to join us on zoom to tell stories and laugh. We drink wine, my LO has apple cider and I have found this as close to getting out with friends as I can manage at the moment. 

Going out to a restaurant or other locations are challenging and add to my worries so this is what we do. 

I also have the luxury of working a few less hours so while I do have someone sitting with my LO, I go for a bike ride or just sit in a quiet place. 

Also, I started playing simple games with my LO, we used to play cards all the time,  so I have simplified the games to go fish or dominoes where we just match the tiles. I find this keep us both distracted and entertained. 

I just ordered a puzzle with BIG pieces as my LO has arthritis, but has always loved puzzels. 

I agree with all the suggestions here... definitely find time for self-care, but also find a common interest or hobby that gives you both connection and entertainment. 

Just figuring this out one day at a time. I have all the feels. 

Hugs,

Cyndi

waywardson

I read your post. It's moments like this that remind me the difference between sympathy and empathy. The difference between "gosh, I feel sorry you're in that situation" and "boy-oh-boy do I understand what this person is feeling." I know exactly where you are. I actually feel like, in some ways, I have already broken. That I'm not going to get through this thing completely intact. That caring for my mother has already changed me. And not in some Hallmark Movie good way.

I looked through the replies hoping to find something for myself in suggestions posted to you. Everyone seems so heartfelt and sincere. Yet .... It's more than just finding five minutes to look at a birdfeeder (it's good advice, I got one, seed is pretty cheap at Ace. But, it attracted rats.) It's about "who we are". At least for me it is. It's about hope.

I looked for a key that might help my situation. It wasn't there. Probably even a little naive to think that a message board post could solve it all; could have the key. ... You're not alone. I'm not alone. I get where you are. Totally. Personally, I go to CruiseShip websites. Wander aimlessly over itineraries that I couldn't really afford even if I had the time. Look at the floorplans of the cabins. Find dining menus and decide what I want to order. ... I escape. If I even go for a walk around the block there might be consequences when I return. But, I can sit in the chair, mom in her chair, and travel the world. With one eye on reality.

I don't know what to tell you. I wish there was something you could tell me. ...

mommyandme (m&m)

My first thoughts, can you increase caregiver hours to time outside of work?

All you’re doing is working. You go to work, and then come back to more work for your LO. Shoot, even the treadmill is work. (Whenever I’m on this forum I’m working out, I understand the need)

Getting time while your LO is cared for and caring for yourself, is key.  If I didn’t have some leisure time, no matter what i did with the time, I’d be a lot worse of than I am.  As caregivers, it’s hard to be selfish at times, but it’s time. 

VKB

Yes, caregiving is very difficult. I found it to be almost impossible sometimes.  Yes, I even wished I could run away from taking care of both my parents. Yet, I got through by praying often. God is faithful.  And I kept reminding myself caregiving is worthy pursuit because it involves love. The greatest gift we can give is love.  I prayed for you.

Love&Light

LongBee, it's so hard and my heart goes out to you. For me, it often feels like I'm on a one way road that I can't get off of and there is no exit. And FFS it seems like it just keeps getting harder no matter what I do.

What has worked for me is Netflix. I soothe myself to sleep a lot of time with a series I can lose myself in. Period dramas, ridiculous teenage vampire series, comedies. I feel like the ability to disconnect in that way has saved my sanity. That subscription is sincerely the best $$ i spend every month. 

Also, and I know it sounds vapid and stupid, but I look at beautiful jewelry. Never in my life would I own this stuff, but for some reason looking at gorgeous canary diamond rings with over the top encrusted diamonds settings, does it for me. It's just so escapist and not grounded in my reality.

Waywardson's response very much resonated with me. I am changed, and not in a good way as I go through this journey with my father. It is devastating work. I do find pockets of joy with Dad, but for the most part I am worried and sad and exhausted. 

I do know this... it will not be like this forever. 

MLS2021

I really don't have any insights to share. I just wanted you to know you are heard and understood. I have only been caring for my mom since October but I empathize with your feelings. If it wasn't for my husband I would go crazy.

We also take care of his parents who live in an apartment on our property for the last 27 years. Both are in their 80's and my MIL has dementia.

I will take some of the suggestions to heart.

bozowing

As I and many others here can 100% attest to what you are feeling, you MUST make time for your self.  

Get in your car and drive, walk in a park, go out to eat, go to a bar and strike conversations, if you are lucky to have a true caring friend go see them, and pray.  Finally, just sit in a recliner and watch TV with a glass of wine or cocktail and do nothing.

In short, you MUST understand you will crash and burn if you don't take a break.  We know this caregiving is emotional hell, but you MUST take care of yourself cause your no good to anyone if you break!

GOD BLESS you and may he continue to give your strength

bkrowes

waywardson, I loved what you had to say.