So aggravated with DH I could spit--long. UPDATE :)

[minkydog]

The reason I'm posting here, rather than on the CB, is that this is related to some disability issues. I think on the CB I would just be asking to get flamed.

So here goes. DH is disabled with severe lung/heart disease. It affects everything--breathing, sleeping, talking, everything. He is just deeply fatigued most of the time. Therefore, we do very little outside our home and we have very few friends who have been willing to hang in there with us (this has been going on for at least 5 years). We also have a DS13 who is severely mentally handicapped & autistic. Christian can walk, and is partly potty trained, but otherwise needs care & assistance with absolutely everything.

Needless to say, DS wears DH out quickly. In fact, folding laundry wears DH out. Cooking a meal wears him out. Shaving wears him out. He needs to take a nap, a real lay down and go to sleep for 2hrs nap, at least twice a day. But will he do it? NO. He knows he cannot get through the afternoon-evening hours unless he had a nap, but he will not set aside the time to lie down. Then he's overly tired & snappish, and I come home from work to take care of Christian by myself because DH is too tired to pick up the remote control, let alone bathe or play with him. Due to his fatigue, he gets confused easily. It's a little bit like early Alzheimers and it's maddening. I have to make things very simple and very clear. And write it down. And he still may not understand.

Tonight I just snapped, but only after DH smarted off at me. I swear, he pushed me into it. We were trying to plan a summer vacation. We currently have a week at the beach planned, but DD15 just made the dance team at school and of course, the week we picked is the very week she HAS to be there. She has worked her tail off to get there, so I really don't mind changing our dates. So DH & I sat down with the calendar to put in some dates. Anyway, he got aggravated because we were trying to re-plan this Florida beach vacation and he threw a fit. Told me to just plan whatever I want, he doesn't care!

Thing is, he DOES care. He wants to go to NYC for a week and visit his elderly mother for a week in Florida.We have a family reunion planned at July 4(5 days) and I have a 11 day trip planned for myself so I can get some respite. I know DH is feeling overwhelmed I know. But don't take it out on me, sir! I'm doing my best to take care of you and the kids, work full time, do all the running around with the kids, attend all the recitals by myself, oh, and provide entertainment for us that can be cancelled at a moment's notice because DH may not feel up to doing anything.

I never speak ill of my DH and I never raise my voice to him or lose my temper, but tonight I did. I didn't yell, but I raised my voice and told him he was acting like a petulant child who isn't getting his way. I understand he is angry with himself and the disabilities which have wrecked his life (and ours.) He ended by saying he just wants to go to bed and avoid me altogether. Fine with me. He's not being too much fun anyway. Bleah

If you hung in there with this, thank you. i'm just aggravated and I know it will pass. But you know? it's just hard, sometimes, being a caregiver.

 

[mommasita]

I can not imagine how difficult it is for you. ...I know that I also have some auto-immune issues that make it difficult at times, especially for my DH...

Naturally you are overwhelmed, and right now exhausted...Try not to feel guilty for saying what you did, or thinking about what your DH said, if you can not take things out on the ones you love, then who can you take it out on. We say things we do not always mean in the heat of them moment.

I hope you can get a good rest tonight, and hopefully tomorrow things will be easier. I know that when I am overtired molehills feel like mountains..

I will keep you in my thoughts and prayers..

 

[Jcricket Fan]

Yes it can be very hard being a caregiver and you have quite a bit to deal with.

The people on this board are very supportive. Please feel free to share your thoughts and feelings anytime.

Peace to you.
Colleen

 

[Mackey Mouse]

I hear you... trust me on this, I hear you.. I am glad that you knew you could come here and vent and no one will judge you... they better not.

Maybe it was good that this happened tonight, maybe now he will take that nap that he needs to take so that he is not that exhausted in the evening..

Hugs to you, sounds like you have your hands full...you are doing a good job... get some sleep and tomorrow is another day, it is the weekend, hopefully you are off on Saturdays and can have some family time... relaxing... I hope.

 

[Sheree Bobbins]

You sound like a saint. You have been given a heavy burden and I admire you that you are able to cope and to continue to support your family. You're only human and can't expect to always give only positive feedback and support. It's okay to be assertive about your needs and desires. People can disagree or agree as they wish. You have a right to your feelings. Anyway, you sound like you are under a lot of stress and my thoughts and prayers are with you.

 

[KPeveler]

i think it is harder for the caregivers than for those of us who are actually sick

perhaps you should look into family counselling with a chronic illness specialist - i know it really helped a friend of mine when she was diagnosed with several chronic illnesses... basically this therapist specialized in dealing with people with chronic/terminal issues, and helped them rearrange their lives. i know sometimes a perfect stranger can get through to someone when a loved one cannot. they may be able to help your husband understand that taking a nap would not be "giving in" to a disease (which a lot of people are concerned about), but simply living with it better, so he can better spend time with you and your son and daughter. i dunno if this would help you, but it may give you a onstructive way to vent.

i say this as someone who was once a caregiver, and now is living with chronic illnesses. i sympathize with you - and hope things get better!

 

[frdeb1999]

Feel free to vent at any time. I for one will be willing to listen. Hopefully things look better this mornnig. You sound like you handle things extremely well all the time....everyone has to have a release once in a while.

 

[mommasita]

CHecking in with this morning. I hope you ALL rested well overnight, and things seem a little easier this morning..

 

[kdzgon]

Dear Minkydog,

I came to this board today to post, as I am feeling sooo overwhelmed I simply do not know what to do. I will not hijack your thread, but I did want to say reading your issues helped put mine in to perspective a bit more. While my plate is heaping, some of my issues will soon pass in one way or another, but you will continue to carry your full burden down a road that stretches much longer.

Bless you for the job you do, all day, every day. I hope your venting helped you get through the night, and I hope you end up with an absolutely fabulous vacation, even if you are the one that must be responsible for the work it takes to plan it!

 

[safetymom]

Been there, done that. Don't be hard on yourself. We are only human and we do get frustrated, upset, tired too.

It sounds like you have a lot to deal with. Don't forget to be good to yourself while you are taking care of everyone else.

Please come here and post when you are feeling frustrated. It really does help. I used to "escape" to the grocery store or mall for a short time to catch my breath.

 

[CarolynU]

Judge you? How dare anyone unless they would like to change places for even a short time, and I think the likelihood of that is zero. You sound like you are doing one hell of a job, and I for one applaud you. You are tired, and human. Hang in there.

 

[julm26]

Oh i've been there as a caregiver and it is the HARDEST JOB IN THE WORLD. let alone having to take care of anything else. You carry a heavy burden and you deserve a place that you can rant and rave. You love your DH - but that doesn't mean you don't need time.

No one should ever judge anyone until they have walked in their shoes. God Bless you and let us know how you are doing.

 

[agnes!]

Hey, minkydog, hope things are better today. So sorry for all the stress that you & your loved ones are going through.

Prayers being said for you & yours,
agnes!

 

[minkydog]

Thank you all for your words of encouragement. It has been a stressful day. I forgot to take a sleeping pill last night so I didn't sleep very well. I've been up since early (after waking at least 7 times during the night) and DD15 had a 3hr concert this afternoon. DH stayed home with Christian. He has yet to acknowledge our little altercation last night and, frankly, I'm still too upset to bring it up. So we have been walking around on egg shells all day.

DH is becoming anxious about my upcoming trip to WA (we live in GA.) He was all for it back when I made the airline ressies, but now that it's 2wks away he is haveing a lot of second thoughts. Even though I have saved up enough respite hrs this year to have Christian go away for a little vacation of his own while I"m gone. Which will leave DD15 and DH to themselves, and *she* has a 9a-3p music camp scheduled for the whole first week that I'm going to be gone. DH will have lots of time to rest and really, one of the easiest weeks of the year

Those of you who have been long-term caregivers, did you ever have to deal with someone who wants you to be there with them all the time? DH *says* "you should get together with friends" and "why don't you get out of the house for awhile" but if I take him up on it, he calls me at least twice to find out when I'm coming home. He gets sorta whiny if I don't come home from work as fast as I can. On the weekends he highly resents if I am obligated to do anything--not that *he* has anything planned. He just wants me to be available 24/7. I feel like I have no life, just go to work and come home, take care of the dishes, get DS ready for bed, rub feet, scratch back, dish up ice cream and pull up the covers. Then I go to sleep and start all over again in the morning.

Even going to church is uncomfortable. Our church cannot accomodate Christian. He's far too active. So if we go to church, we either go separately or we go when Christian is at respite. A lot of sundays, we just go up to the lake and walk the accessible trails. DH says "why don't you go to church?" Okay. I'd like that. Except, then he resents that he had to stay home and take care of Christian

I think I just need some down time. It's the end of school--"only 5 more get-ups" as my DD would say. In 2wks I'll be camping with my sister on our girls-only trip to Mt. Rainier and the Olympic *****ula. Ahhhh, calgon take me away!

 

[julm26]

My mom had pancreatic cancer for 4 years, and she lived with us. I am an only child and was her sole caregiver - it wasn't so much mom made me feel guilty to have sometime just with my DH and DD(3) but my aunt(mom's sister) and cousins. My mom could be very difficult and mean (who could blame her - she was dying, though thats not really an excuse) and my aunt and cousins would get mad at my mom for things she said.

I was under tremendous stress and last september my Doctor said either go on a vacation or I put you in the hospital. I wisely chose the vacation to Disney World!! But my aunt and cousins were furious at me "How could I leave my dying mother" - BECAUSE I WAS GONNA END UP IN THE GRAVE BEFORE HER A caregiver must take care of her/himself before they can care for the patient. My mom is gone now, but I have no regrets - I took care of her to the best of my ability and in the end I took care of myself also.

You deserve this time to yourself. I'm actually going to Florida with my two best friends in the beginning of June without DH and DD - I need time to heal (I miss my mom terriibly and the grief sometimes overwhelms me) without the responsbility of being a mom or wife.

Have a wonderful trip

 

[kdzgon]

My mom had pancreatic cancer for 4 years, and she lived with us. I am an only child and was her sole caregiver - it wasn't so much mom made me feel guilty to have sometime just with my DH and DD(3) but my aunt(mom's sister) and cousins. My mom could be very difficult and mean (who could blame her - she was dying, though thats not really an excuse) and my aunt and cousins would get mad at my mom for things she said.

I was under tremendous stress and last september my Doctor said either go on a vacation or I put you in the hospital. I wisely chose the vacation to Disney World!! But my aunt and cousins were furious at me "How could I leave my dying mother" - BECAUSE I WAS GONNA END UP IN THE GRAVE BEFORE HER A caregiver must take care of her/himself before they can care for the patient. My mom is gone now, but I have no regrets - I took care of her to the best of my ability and in the end I took care of myself also.

You deserve this time to yourself. I'm actually going to Florida with my two best friends in the beginning of June without DH and DD - I need time to heal (I miss my mom terriibly and the grief sometimes overwhelms me) without the responsbility of being a mom or wife.

Have a wonderful trip

Yes, we have to remember - it's even one of the first warnings we receive in the airline (and cruise) safety briefings. If you do not have your own safety gear (oxygen mask, vest, (sanity savers!), etc) you cannot count on being able to assist those needing our help. It's even more vital with caregivers - after all, if you collapse (figuratively OR physically) who will be there to carry on for the person needing so much care?? Enjoy that trip to Florida, and I hope and pray you are able to leave behind and guilty doubts that could interfere with a wonderful time!!

 

[Jcricket Fan]

Minky I don't know if you have visted the National Family Caregiver web site the link is:

http://www.nfcacares.org/

It is a link to some very good info. on caring for Yourself as you care for others among a lot of other caregiving information.

I hope things are better for you today.

Peace.
Colleen

 

[LuvOrlando]

I have no advice, just a big

 

[LittleBlue22]

I hope things are better for you and your dh.

 

[arminnie]

Those of you who have been long-term caregivers, did you ever have to deal with someone who wants you to be there with them all the time?

I am going through this with my father. I know about feeling guilty - he just got home today after having a stroke. Fortunately he has no permanent damage.

My sister is now here with me - but is not helping a lot. I sent her to the grocery store. She has called me FIVE times. I don't care what she gets. She is 50 years old and has worked in the food business for over 20 years. Just plan a meal and buy something.

Of course my brother cannot be bothered at all. He took her ex-girlfriend's daughters to the mall instead of visiting my father. He'll probably come visit in 6 months.