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

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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.

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Yes, 195Austin, they tell everyone they are fine - always. Maybe fear of the alternative - to admit they aren't ok is just one step nearer to a place they don't want to be.

SuetheQ - I firmly believe it 'what goes around comes around' but it still doesn't make things any easier when you cannot count on your family to tell you the truth - and to neglect your own elderly mother? Unconscionable!!! I told her this morning that her middle son answered my email about her TIA and said he hoped she was feeling ok now. She asked if I heard from YOU KNOW WHO and I said no. I know it hurt. But, he has never visited her much - even when she lived fairly close. One of the last times he and his wife visited her before she left the State - his wife wouldn't even go inside the house - she said it 'smelled.' I say roll up your stupid sleeves and go in and give the place a cleaning - she is OLD, just had a knee replacement and can't do it anymore! Instead, they chose to make his mother feel like crap. They still do. It is sad. Some things can't be fixed.
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I am so glad you have good friends who get it so you know that generaly when you need it you can have support.
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Oh my gosh! That is so bizarre! I tell my friends that as soon as "they" will make me emperor of the world I have big plans for your brothers' kind of people. I figure this is what God intended when he made the Sahara. Put a good electric fence around the sucker and we can dump them all there.

ah....here's a story...Had an agency sitter staying with my mom one day. This lady had hit it off with my mom right away. Very sweet, it had gone so well for so many weeks. I'd gone for a walk at the park with my friend that day. It was a lovely peaceful day in the middle of a phenomenally stressful time we had been going thru for weeks. We were sitting on a bench in the middle of the rose garden and i was feeling so at peace for the first time in weeks. THEN I got the call from the agency. The sitter had become confused about my return time, decided I was late, and just LEFT MY MOTHER ALONE to go home! It's shocking how quickly your blood pressure can peg out, isn't it? And yes I most certainly did call the owner of the agency later to have a little talk. But it took me 24 hours before I could calm down enough to do it. And yes, part of the conversation was who would NEVER again come to our house. When we go on vacation I have to have a back up plan for my back up plan of the back of plan. And one year we actually did run thru all of those.....while I was 3,000 miles away. Oh yeah, things are just peachy....

Gee, didn't mean to hijack the thread ya'll. Back to the subject that started the thread. Getting outside is huge in helping me cope. Even if it is just to step out on the deck and listen to the birds and feel the fresh air. But a walk in the park is awesome. You might need to take a fist full of kleenex to catch the tears. But I really try to look at it as being my trip away from the stress. I leave it at the gate when I go in. That one day.....didn't work so great! ha I have a handful of close friends who I know have given me a standing invitation that any time I need to go have a good cry somewhere where someone can keep an eye on me if I'm really close to the most dangerous edge of totally falling apart, I can go there. And I know I can call them if I'm in a tight spot for a caregiver. (and then there is the other little item your brother doesn't think about. Have had times when I needed my friends help and it happened to be when all 3 of them were absolutely unavailable at that moment with their own emergencies. Stuff like that just happens.)
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My mother 93 is as sharp as a tack and I blame her for not telling my younger brother how she really is doing so of course he does not believe me when I tell him she is frail and encourage him to go see her once in a while.
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Suethequilter - Such truth in your comment! I will share our experience last June with my husband's brother - who thinks that if mom 'looks' ok, she is ok.

My MIL's youngest son came here to stay with her while we went away for a week last June. We left on Saturday morning and without telling us know - he left THE NEXT DAY!. He had said he would be with her for 5 days and our kids were going to be with her the final two days.

My MIL had just been released from the hospital due to sciatica 4 days before, was on steroids, her blood sugar was running over 300 (she needed to check it 3 x a day and write down the numbers - which she forgot to do without someone to remind her), her BP was running high due to pain, she was on pain medication that made her dizzy and her legs were almost too weak for her to stand on due to the sciatica. He arrived Friday night and we loaded the car Saturday morning and as we waved good bye he said 'don't worry, WE will be just fine.'

We had purchased trip cancellation insurance and could have cancelled and gotten our money back - except he said 'go ahead' - 'WE will be fine.' WE???? Give me a break!

No sooner had we left - then HE LEFT. The very next day! We would not have known this except she called our son to ask about a medication and our son called us and said 'I think YOU KNOW WHO is GONE!' I am pretty sure grandma is home alone. Sure enough - mom told him she felt fine, that she could 'manage alone' and he left her and went to VEGAS!

He had to have known he had no intention of staying with her before he came down here - no one buys tickets to Vegas at the last moment and he left for Vegas two days after he left here. What kind of JERK does this to his own brother and sister in law - who have cared for his mother - without any help at all from him in 6 years???

Needless to say, I just about had a stroke when our son called us and we left our condo and came right back home. Lost our respite week, lost our money and we never even got an apology from the JERK! I don't think my BP has ever come back down to normal since. The next three months were spent going to doctors for spinal steroid injections. (each visit took 6-8 hours counting travel time).

He calls her once every month or two and has the SAME CONVERSATION every time and she tells him she is fine and that's it. He doesn't believe us - that she isn't fine.

You just gotta love everyone who always asks about mom and NEVER, EVER, asks how we are holding up.

My MIL can dress herself and deal with her potty needs but if left to her own devices, her meals would consist of crackers and milk, PB & J sandwiches, cold cereal or Lean Cuisine. She would forget her meds 75% of the time.

I don't think anyone can comprehend what it is like to spend so much energy trying to help someone to notice that the sun is shining. How dreary and morose it is to have the SAME conversation day after day after day - mostly about incontinence, constipation, diarrhea, pain, medications, people who are long dead or those who are near death. When she remembers people - she always remembers unpleasant things they did or said. :0(

This is our 'new normal.' Yes, it could be 'so much worse' and we can hardly wait :0(

My MIL waited two weeks to tell us she thinks she had a mini stroke. She told the bath lady last Friday who told her to tell us ASAP and she waited until yesterday. I asked why she didn't say anything when she was experiencing the numbness in her tongue, face and arm and she said 'I don't know.' I told her it was a medical emergency and that many people who have a TIA go on to have a major stroke. Her mother died of a stroke and so did mine. I kept calm and told her that I was going to report this to her doctor - she didn't want me to. Anyway, she is mostly fine (a bit of weakness yet in her arm) and now is taking an adult aspirin a day to thin her blood (guess that is fairly standard for this). So, now this new wrinkle.

I emailed her other two sons about this latest 'mini crisis.' The middle son at least answered back right away. Guess who we haven't heard from yet? You guessed it. Mr. Vegas - her sweet baby!

Thanks for letting me dump. It sure does release a lot of frustration! Thank you!!!
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I definitely understand what you are saying Anita. There are days when you just have to make a conscious choice the moment your eyes open in the morning to stuff it and not dwell on the suffocating feeling by using all your emotional energy to think about something else. That's key...you can't just choose not to think about something, you also have to force yourself to concentrate on something different at that moment. It doesn't help at all that it is winter and you can't get outside, does it!

I get really steamed at times knowing that some peoples attitude is that hey, my mom can dress herself and handle her bathroom needs so it's not a big deal. She looks ok, so it must be that everything is peachy. Yeah... (My brother is one of these. He has been to visit her once in the past 3 years.) And I am educating people that they can just stuff the "well just think how much worse it could be" observation. When folks are having a bad day and going thru a time when they can get from where they are right now to "so much worse" in a literal fraction of a heartbeat, they do NOT need the reminder of what can happen a moment from now. Thank you, shut up already! Or are you really trying to push me over the edge, hm? sheesh! Of course these are the ones who have never been in our shoes. These are people I learn to just not talk to any more. And then there was this lady at my church (and yes she is one very strange duck to begin with!) who routinely asks how my mom is doing. No matter what answer I give, her response is the same, "well, she just wants to DIE you know. They all just want to DIE!" She's just plain creepy so I see her coming and go the other direction. If she does come up to me to talk, I just walk away. Rude, but self preservation, you know?
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Our sitter is a local lady. She is elderly herself but very capable, has no family or pets at home and is thrilled to be of service to us. I found her thru a local pastor's wife. You might try a church and see if you can find someone who would love to minister; usually a much cheaper option than a nurse unless you actually need a nurse. While I have a contract job that is irregular and gets me out a few hrs a week, I make a point of getting out of the house several hrs a week for me - yoga and working out at the gym. Even with that I still feel like I'm in prison. In the summer, I work outside a lot. Hate to voice this but I'm at the place that I am not "glad" to be doing this job.
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Rockinrobin - it is wonderful and RARE that all of you kids are willing to help your mom with your dad's care. Early on, it won't be as hard as it will be later. But, make sure you don't 'allow' the sibling who lives the closest and who has the 'qualifications' to end up with the majority of the support for mom and dad. That is easy to do and so unfair.

From a caregiver's perspective - the thing that I long for the most and get the least is 'relief' or 'respite' or a 'break' or whatever you want to call it. So, if you other kids can spend time with dad and allow someone else take mom out for the afternoon - that is always a welcome break for a caregiver. If mom isn't willing to leave him - try and talk her into it. If dad enjoys car rides - go together and enjoy your time together. Stop for ice cream or something everyone can still enjoy together.

If your sister who is the nurse ends up with the majority of the care-giving support for your mom and dad - make sure she gets a break from it - regularly!! Be sure to thank her! Ask your mom what she needs. If it is early - she may not even know yet. Keep asking.

It gets old real fast to be the one 'on call' all the time. So, offer your assistance taking him to the doctor, on outings, that sort of thing. Keep offering. Read some of the threads on this forum and you will be able to see and hear a 'theme' - act on that. Don't let your mom and sister do it all. It is so easy to do that - we all know how it is with 'out of sight, out of mind.'

Sadly, my MIL has 2 other sons who rarely call or visit and don't offer any breaks for us as her full time care givers. This is the case with many caregivers - I think. The other kids are more than willing to back off and forget about it. How sad. It just makes a difficult situation more difficult. I figure is another family member can offer 1 week respite per year - they still have 99% of their life as their own. Offer 3 weeks and you still have 95% of your life to live as you please. Do the math - don't forget to help. Your family is rare indeed. Your parents did something right :0)

I am sorry to hear your family is facing this sad and difficult situation. But there is support here on this forum. Take care of each other and spread out the burden - when it becomes harder to deal with. Many hands make the load lighter. :0)
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Izabella, I am new to this site but have already felt a weight lift off of my shoulders. Now I don't feel the need to babble on like an idiot every time I can get alone with another adult, about what 'she' did today!

I so appreciate the non judgemental, understanding responses I have found here.

As babyboomers I guess we should have looked ahead and prepared better but hey, we never thought we would live this long, right? :-)
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I am new to this thread.. but not this site.. and for my feeling of imprisionment this site has saved my sanity.. I can no longer leave the house much at all.. and I also have no help.. I miss spending time w/my kids and husband doing family stuff.. going to dinner..movies ect.. cant bring my mom because she tends to complain a lot! and I don't want to ruin everyones evening out.. so they go out and I am home day and night unless Im taking someone to a Dr. appt.. I dont even bother to put makeup on anymore.. I feel for what..I dont leave the house.. I feel guilty feeling like I am missing out on spending time w/my kids and husband..or feeling like life is passing me by.. because I know my mom needs me.. so..we watch her shows..(All in the family).. I do feel like my only reason to get out of bed is to answer all the same questions as the day before..cook..clean and then mentally be completely drained.. I wish I had some advice to offer.. but one thing I will say.. Thank God for this site!!!!!
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