Care takers Stress

[featherbaby]

Oh My! I know just what you are feeling. I am a divorced 59 year old, caring for my 86 year old mom 24/7 who is wheelchair bound, with dementia and mentally ill. There are days that I want to resign as an adult and just run away.......far, far away! My whole life now revolves around her care and I can't leave the house (or even go outside to care for the chickens) except for short 15-20 minute bits unless I have a caregiver to watch her. It's a special kind of imprisonment we are both experiencing. Like your husband, she is critical and condemning of everything. She doesn't recognize me as her daughter (I'm an only child, go figure) and is really about 5 years old mentally and emotionally. The days she's cooperative things go better. Almost every day between 4pm-7pm we have an episode of "sundowning" which includes crying, hysteria, screaming, and sometimes hitting if I don't get out of the way fast enough.

I know all this doesn't help your situation. I have no magical formula for that, except time. We have to realize that this is a temporary situation, and we don't know how long they will be with us. Over the past year I've had to realize that my service to Mom is God's training program for me. I don't know just what He has planned in the future, but I know things won't always be as they are now. My Dad was here with me also for the past 10 months until he passed away a few weeks ago. Things changed again after that. I have had to be more flexible than I thought possible, but I'm still standing.

You need to take greater joy and encouragement for yourself when you make it through a day and you're still standing. I'm not big on support groups especially with my limited "free" time (16 hours a week when a caregiver is here) so I make use of the computer and phone to keep in touch with caring, supportive, encouraging people. It keeps me on an even keel when I really want to rock the boat. Hospice was a great resource when my dad was nearing the end. They do have respite care available. Give up on your daughter's contributions. It will only frustrate you and make you resent them. It won't change their actions. Believe me, you CAN do this without them. Do some research on the computer for organizations that help handicapped people in your area. Be creative in your searching. I know money's tight but If you can hire someone for min. wage just to come sit with him for 4 hours in the morning it would give you a break to do something restorative outside the home. Try putting an ad on CL and I bet you'd have lots of applicants to choose from. Get references since you'll be leaving them in your house alone with your DH. Above all, keep venting. Keep talking about your experiences and frustrations. If you internalize them you'll get mentally and physically sick. Also, try and get your DH some mental health counseling (there are free or income based programs in most cities) to help him deal with the terrible confinement and loss of independence that is crushing him and making him hard to deal with.

God bless you as you do the hardest job in the world. Your reward is coming. Maybe not today, but it's there and you'll enjoy it when it's time.

 

[Cowgirlgrace]

I realize it is frustrating for someone in a wheel chair to be dependant on another for their everyday living but being abusive is no excuse. You both need a break. I'm sick of men. I don't care how sick they are. If they love you they should treat you like they do. I say lay it all out there for him and the kids. DH doesn't care, kids don't care, no one cares what YOU are feeling. It's all about everyone else. Your feelings and needs should be acknowledged. It's not selfish. If he has his wits about him he needs a reality check. He needs to get counseling and deal with the cards he was dealt and appreciate those in his life who are forced to live with it. Otherwise he will be alone. The kids need to step up also if they care AT ALL. Sorry if I sound insensitive. I'm not the one in a wheel chair but it goes both ways. No one should be trampled on like you. Intervention time!

 

[Carols Clucks]

First off, I do not advocate running away.

But for my elderly aunt, it took running away to get her kids to realize she needed help. She took my uncle up to the senior center they frequented, left her sons number for a contact # and hit the airport for a flight to come visit me. It was quite a surprise when I got a call from the airport bus driver that he had her with him, she was upset and crying and I could pick her up in a few minutes.

Meanwhile, her son had gotten a call at closing time it was time to come get dad and Mom was no where to be found. I did call and let him know that I had her so he did not need to worry and she was going to stay a few days and take a break. Her son quickly realized how overwhelming it was for him and much harder for her at her age. They got some help for her, started doing the yard work for her etc. It really took putting her kids in her shoes for a few days to enlighten them how much work caring for him had become.

My mom ended up getting sick while caring for my dad, he was hard to get along with on his best day so there was NO way I could help care for him, but I could do the stuff she couldn't for her so it freed up her time.

I hope you find some one that can come and give you some time off, you surely need it!

 

[Momagain1]

oh sweetie!! You can vent all you wish..honestly!!!

I wish I livd near you, I too am a CNA and worked with the mentally/physically disabled, specializing in the elderly..but I also worked for
Cerebral Palsy network as well..

Maybe you need to call your local disabled vet center and ask about respite care...maybe there are others in your area that are willing to
come in and sit for a couple hrs while you go get a meal w/friends out etc..

Maybe call your local counseling center and see if there are any support groups...


Hugs hon!!!

 

[firedancer57]

I would like to take this opportunity to thank every one who allowed me to vent my stress and anger. Thank you for that great advice.
I have contacted several agencies here, Hospice sent a list of available resources, as well as United Way and the D.A.V. Our local Vet center
sent out a social worker, interviewed me and DH, walked out the door and basically said good luck. Dh says "he don't need any help."
Needless to say I exploded and told him how I was feeling and how he was making me feel angry at him and well we talked for quite a long time.

Our youngest daughter didn't realize what I was doing for him, she was under the impression that a CNA was coming over to help.
Where she got that idea, well anyway she said that she will give me two hours every Monday, just for me.

Thank you again for listening.
Ann

 

[punk-a-doodle]

Vent away! What a tough spot for you both to be in. When you have a hard job, feeling unappreciated just makes it that much harder. I may be completely off base here, but perhaps your kids are not 'too busy'...perhaps dad's attitude is not something they are wanting to be around. The fact your daughter said she'd help you out just for you (not your husband) makes me wonder this as well. People have given great advice, and you are being very proactive. Is there counseling you can get your husband? It sounds like that could really help out everyone. Maybe look into trained service dogs too to help him out (financing is sometimes available, or donations). For some, having an animal help them is easier to deal with for many reasons. Really though, I am just so sorry you have this overwhelming stress going on. I hope things ease up and hope your daughter helping out will also help.

 

[calicokat]

So glad the DD is going to give you some time!

I really hope she is able to get more of the family or friends to understand and be willing to pitch in for a few hours once a week. That would be such a blessing for you and for DH.

Keeping you in my prayers and sending

 

[Randy]

My dad has had mobility problems for years but for the most part has been able to take care of his more personal needs until recently as his health has really started to go down hill. I am just starting down this road and I wanted to say how much respect I have for anyone that takes care of a loved one like that. It's not easy and it's very humbling but you do it because you love them.

 

[Spookwriter]

I agree, vent away. Let it out. Talk it out. And know that we are
here for each other.

Being a caretaker isn't something I think we ever plan on. Just the way
life works out. It's a hard job. Stress...yeah, it does do that. On everybody.

And yes...I know very well how much help you don't really get from other
family members.

Been there, done that.

Her father was with us a little over two years. Wheelchair bound, stroke survivor.
Missing his left arm since '84. Stroke took his right side. So yes...I understand.

How very well I understand. So vent away. Anytime you need, about whatever
you need.


Spook

 

[featherbaby]

I am the 24/7 caregiver for my 86 year old mom who has dementia. It's a real challenge and one of the hardest things I've ever done. To keep my sanity I try and focus on something positive, good or beautiful every day. I asked a wise person once how they kept their optimism in the face of heavy trials. She said she'd learned to take greater joy in smaller things. I am trying to do the same.....and a small glass of wine at about 4:30 ('sundowning time') doesn't hurt either.