Any ideas how to cope with feeling like your in prison while caregiving?

Asked by

I am so homebound with mom I rarely get out. I did get a nurse for the 23rd to do things with grandkids and daughter/son in law. But at 22.50 an hour that gets steep.
I have lost interest in any hobbies I used to have...stress has given me health problems so I'm tired all the time. I spend most time in bed reading or watching TV and feel like I'm wasting away. I think it is getting to hubby seeing me like this. J
Just want to know if there is anything I can do to "snap" out of it. I did get a "light therapy box" and it helps, but hubby noticed I am forgetting to turn it on.
What do you all do to pass the hours and stay sane. I won't put mom in NH as long as she knows what is going on - it would break her heart.
No relatives to help (although daughters family going to give me a weekend off) my friends have their own issues or are all to much in the social scene they would not consider helping and cramping their style.
Any ideas I'm missing....there are so many of you on this board that are very intuitive.

Answers 1 to 10 of 47
Hmmm...have you got some home exercise equipment? Music you could dance to? Even just a Theraband or some five to ten pound weights you could do stuff with in bed until your arms get good and tired. Some people find any kind of physical activity works very well as a mood booster as well as a health builder. And IMHO, a little chocolate (even nonfat hot cocoa if you need to watch your weight) wouldn't hurt either!
Do you like to read that help me when a child and also during my long marriage and after the husband died also getting on a thread here that you can follow-I will give you my connect so you have a person who has been there done that and survieved
I so understand the feeling and I at least get to work 1/2 a day. Unfortunately I don't have any solutions, but sosmetimes it helps to know someone else feels the same way. Make your goal to turn on and use your light everyday. Its a start! Keep posting and visit us again on the Grossed Out Thread
I know how you are feeling, I also am feeling the same way. I have lost most of my friends, my job, my intrest in hobbies and all I want to do is sleep. The only thing that keeps me going is my faith in God that things will get better. If you want we can vent to each other. Take care
goldfbard We all feel your pain. And only people who are in the trenches do. Your friends (if you still have any that bother to call or e-mail more than 1 or 2 a year) who aren't doing this don't understand AT ALL. And after awhile I didnt' even care that I didn't see or hear from them because it was frustrating.. They are all full of "get a hobby" and I was full of "I had to give up my hobbies beause of this" I have one friend who is very sympathetic but even she has drifted. It's only natural that they will. You as a caregiver need 5-10 day warning to get expensive in-home care to go to an effing movie once in a while and everyone else is living a little more spontaneous than that. ( i.e. REAL WORLD). I too resigned from my job, moved into mom's house leaving boyfriend and friends 900 miles away. I want to be positive but as mom's PD progresses, it's going to be only harder for both of us. I love my mom. She's sweet and is paying my upkeep but I still have no life outside this house (except for running quick errands once or twice a week). As an only child who is unmarried and have no kids all I can say is that I hope I die before I get old because aiin't no one going to be there 24/7 for me. Hang in there golfbhard. You are not alone!
Hi, golfbhard. It's absolutely true that people who aren't doing this don't get it. There is no way they COULD get it. I watched my cousin go through this with her MIL, and THOUGHT I "got it." I was no where close. Now that I am doing it, I understand how much I missed, and how impossible it is for others to understand. SO one piece of advice is to ket go of being mad at them. It's like you are speaking another language now, and they can't keep up. It doesn't mean they don't still care about you. Take care to keep the doors open to them, for when the time comes that your caregiving burdens lessen (and they will, eventually). No use in being mad over something no one could understand without living it.
I have found that reading really helps. Whether it's escapist novels or "useful" stuff about caring for the elderly, it helps to get my mind off things. It has also helped me to have two four hour periods a week where I am not on deck...where my mind can quit listening for is he okay, what might he need. SO it's good your daughters can spell you some, and that you know of a service, even at $22/hr, that can do that.
ALso...you probably ARE tired. Instead of being mad at yourself for wanting to sleep, try just sleeping, no judgment. It's exhausting, on all levels.
Finally -- and this will sound like hocus pocus but whatever...it works... try saying to yourself: "No one can use someone else's energy. I can't help my (Mom) by giving her mine. She can't be helped by me taking on her energy. (NOW TAKE A DEEP BREATH) I gently give back all her energy I have taken on, and take back my energy from her, and restore us both to our rightful selves, right now." I think you'll be surprised by the wooosh of energy you feel come back into your own body.
You AREN'T alone. everything you are feeling is normal. Part of what's hard about this journey is we all think there is something wrong with us, something we aren't doing "right" or "enough," etc. It's not true. We are doing the best we can. Sending love and light....
Golfbhard, I say good for you for having the courage to say the word "prison". That's what this forum is for. Your spirit should feel better for having uttered the word that reflects the truth of your situation. I was so helped by what Jane said above...she put it into words so well. I would add that it is not a good idea to try to solicit sympathy from people/friends "out there" because it won't be forthcoming, and you'll only feel worse ( selfish) for having brought it up. This is the place to complain in safety. That is something I have finally learned .....to keep my mouth shut out there. As Jane said, they simply CANNOT understand unless they have been in the trenches. It doesn't help when someone says to me: "What do you do with your time?" Yes, I have actually heard that, and it feels depressing, discouraging, and draining to hear that. They think I have all this extra time on my hands, but the fact is I need to use any leftover time to rest and recover and rejuvenate my own energy supplies....so I can take better care of Dad. Because the fact is....the EMOTIONAL drain of this experience takes more out of caregivers than anyone would realize, unless they went through it. It can be exhausting. And the longer it goes on, the toll can build and become more fatiguing. So now to end on a positive note, I say that we are doing good, noble work ( some of the most important work of our lives)....it IS worth it to hang in there....we love our parents.....we need to remember to nurture ourselves when we can. Hang in there, everyone.
Even if you are not forced to stay home every single minute - it can still feel like prison at times because you know you are the one RESPONSIBLE - the one who will get 'the call' from Lifeline, etc. It is how stress is PERCEIVED. I know.

Counting on other family members is a waste of energy. We have to figure this out ourselves and figure out a way to cope.

I bought a Wii unit with an exercise board and have ordered the ABBA You Can Dance Game and can hardly wait for it to come. How can you not smile while dancing along with ABBA? (my personal opinion, of course :0)

Reading is a good escape - but we also need to MOVE or we will rot in our socks. Take care of yourself first or you sure can't help someone else. Hang in there!!!
I also agree that someone who has never been a caregiver CANNOT possibly understand the demands. Unless you have lost a child, you cannot feel that pain either. Unless you have been divorced - we cannot feel what it is like to be rejected. That's how life is. Sadly, we have to experience the situation to understand it. That's what is great about this site. We have all been in each others shoes. This is the most difficult thing I have every endured. We have to dig ourselves out of the 'black hole' often. My MIL doesn't understand why 'I' feel stressed - after all, she takes care of herself!! That's what she tells everyone. Talk about a thankless job! She hasn't paid a bill in 3 years - her meds must be monitored and still she forgets - I take care of her shopping and cleaning. She dresses herself and potty's herself as long as she isn't in the midst of some health crisis. I am grateful for that. Never had a clue what I was in for - not a clue! My parents died when I was in my twenties - they never got old.
Top Answer
Yeah, my mom can take care of her potty needs and dress herself most of the time too. But everything else my husband and I must care for. We have no help from family. My brother, we discovered a handful of years ago, was misusing her money and we had to take it away from him so he hates our guts....and well I don't care to speak to him more than is essential. Mom has lived with us for 8 years. She hasn't been able to speak or write in 8 years. She can only read a sentence or two at a time. Thankfully she has a good attitude most of the time. We have a caregiver come in for 4 hours a week. And thus far we have another who can stay with her while we get away for a couple weeks in the summer and maybe 4 overnights the rest of the year to go visit our grandbabies. But you know....we are STILL in a very real way tied to our house on a very short leash. It is suffocating at a times. Always listening for the sound of her falling. When away always listening for the phone call from Lifeline or a caregiver. And even when you can get away on vacation always always cringing at the thought that any moment the phone will ring and that will be it. And always knowing that literally in a heartbeat you can all be in a truly dangerous situation that will plunge you into far worse situations. It's all so hard to struggle with when at the very same time we are feeling all of this, we love her very much and are glad we can do this job. Yep, you just can't understand it until you have walked it! I do find that having music going helps. And sometimes just to step outside and take a few deep breaths! don't watch teary movies. Find ways to laugh. And if I didn't have my gardening and quilting I'd be nutty as fruitcake!

Share your answer

Please enter your Answer

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support