[Skywalking]

I have to engage daily or near daily in a horrible but necessary thing to care for a sick relative. It takes about an hour. In that time, I am angry, frustrated, feel trapped, grief stricken, sad, and often in emotional pain. I'm exhausted afterwards.

I need to figure out how to cope not before or after, but during.

My therapist taugh me a relaxing visualization exercise, but during this task, my mind must remain on what I am doing, and what I am doing is medically necessary but a dreadful experience with no end in sight. I don't know what to do. It's tortuous. Any ideas, especially from other caregivers?

[CANDC]

Sorry Skywalking you have to endure an unpleasant caregiving experience.

There are lifestyle changes that I use to help keep on a stabler footing so I am not so at wits end with a situation.

Breathing exercise with natural breathing do not force.
If you are feeling very anxious or angry or just want to calm down, you can try a breathing exercise that takes the attention away from the trigger of anxiety to a simple tool of counting breaths.

Find a comfortable position seated or la[/quote]ying down. Begin to relax your breathing. Silently count 1 on the inhale, and two on the exhale. Then silently count 3 on the inhale and 4 on the exhale. Continue up to 10 or until you lose the count then return to one. No judgement. I sometimes end up at 18 then smile and return to 1. The idea is to focus on the breath and the counting and not get sucked into the anxiety or anger trigger. Also works to quiet the mind.

I have to watch what I eat because foods I eat can stabilize my moods or exaggerate them. A high protein low carb diet with snacks or meals every 3-4 hours will over time reduce my swings. I also avoid alcohol and recreational drugs because those can really increase depression.

Other lifestyle changes that help me are doing yoga, exercises, mindfulness, calm music, and being active on Psych Central.

PC has helped me find other people that can empathize with me and help provide insights and info. Many people who are actively involved in Psych Central find it helps take them out of their own problems to develop empathy for others. And their problems though still there are more manageable.

There are lots of compassionate people here that can make the load lighter by sharing and caring. Feel free to participate actively at Psych Central. Some people find the forums give them the compassion and empathy they seek. http://forums.psychcentral.com

Please feel free to private message me or any of the Community Liaisons by left clicking on the name in blue to the left of their post) for questions or just to share.

[Skywalking]

I appreciate that.

I am hoping someone will be able to offer suggestions about dealing with this in the moment while I am providing care as that is the challenge. Nothing I do outside of this task makes the task any more bearable. I need survival strategies. I almost feel like learning anti-torture techniques would help, something to help me endure as it's happening.

Any nurses, maybe? How do you deal with doing painful things to your patients?

[Thunder Bow]

Are there other family members who can chip in and help with the care? Can you afford to hire a health care professional to care for the relative. Seems caring for him/her has gotten over to whelming for you to handle anymore.

[Skywalking]

Another family member is the primary caregiver, but they cannot handle this and many other tasks alone. It's a two person job. It doesn't make it easier. I'm on call 24/7/365. I feel anxious when my phone rings because it might be yet another emergency.

Finances don't allow for full time assistance. We have a sitter a few times a month but are entirely responsible for this relative's care and will be until they die.

I can handle most of it. But (TRIGGER WARNING POSSIBLE)


She's bedbound and I have to change wound bandages and perform bathroom necessities, and her mental state is nearly gone from Alzheimer's. She doesn't understand why I'm hurting her, and she screams and tries to hit me and pinch me and begs me to stop.

Additionally, she has had something deteriorate in her brain and she mumbles slurred words repetitively, constantly, while she is awake. Her doctor has tried a variety of medication and nothing works except sedatives that knock her out. It's like torture to have to listen to that for extended periods of time, on a daily basis.

I hear her even when she's not talking, I hear her when I'm at work, I wake up at night thinking I've heard her. I feel like I'll be hearing her screams of pain and hallucinating and mumbling in my head for the rest of my life.

I can handle it most of the time before and afterward. I have cried about this precisely twice in four years . But if there's something I can do to endure performing the medically necessary tasks, something to help ease the pain, to keep from being so overwhelmed, I need to find out what it is.

[Thunder Bow]

It is time to put her in a skilled nursing facility. This is to much of a burden for anyone to take on. Please look into a full time care facility for her.

[Skywalking]

Thank you, but that will not happen. She wanted to die at home. A care facility is not on the table.

What I need are ways to deal with this in the moment. It is something I must do and have to face. I'm just hoping someone here could give advice about it , the hour or so that it takes to do her care procedures, because that's what I am having trouble with.

Anybody? Maybe I just need to find a caregiver board.

[newday2020]

Could you wear headphones and play some pleasant music while you are doing her care?

Sometimes people cannot have their wish of dying at home.
It is just way too much for the caretaker to take on.
If she was well she probably wouldn't want anyone to have to be over burdened with this.
Please check on a skilled care facility.........maybe they would take Medicade?

I had my mother with Alzheimers with me but I finally could not do it anymore.
The nurses at the facility were very caring and she was better off.

[Skywalking]

Originally Posted by susanemily

Could you wear headphones and play some pleasant music while you are doing her care?

Sometimes people cannot have their wish of dying at home.
It is just way too much for the caretaker to take on.
If she was well she probably wouldn't want anyone to have to be over burdened with this.
Please check on a skilled care facility.........maybe they would take Medicade?

I had my mother with Alzheimers with me but I finally could not do it anymore.
The nurses at the facility were very caring and she was better off.

The headphones are a great idea. In fact I keep a pair on me at all times and several playlists on my phone. I've used them at other times to deal with it, but not while handling personal care, as I need to communicate with the other caregiver at that time and can't if I can't hear her. Maybe I can let her know I need to drown out the noise and see if she can work with me while I'm wearing headphones. And I can definitely do it the times I'm performing tasks by myself.

I feel like there's got to be some mental exercises I can use to help myself stay calm and focused and accepting in the moment. Maybe something from DBT? I'll go browsing around there.

Thank you, but we will be caring for her at home for the rest of her life, however long that might be.

I admire u. What a loving person. I don't know her condition but could you have another person there? Not to perform the task necessarily but to talk with you about more pleasant things. I know some communication is necessary but another person can offer some distraction. Perhaps to her as well. Even other people rotating so u are not so concentrated on the fact she just doesn't understand. Bless u.....

[hannabee]

Head phones was also my first thought. Can you bring her something sweet maybe those packages of "smarties" that have plenty of small bites?) to keep her occupied while you are doing your duties. I took care of a woman for about 2 years and she finally passed away at home with the help of hospice. If they have not be called, they should be. They are a tremendous help. Big hug and bless you.

[Skywalking]

Originally Posted by cavaliers

I admire u. What a loving person. I don't know her condition but could you have another person there? Not to perform the task necessarily but to talk with you about more pleasant things. I know some communication is necessary but another person can offer some distraction. Perhaps to her as well. Even other people rotating so u are not so concentrated on the fact she just doesn't understand. Bless u.....

Aw, thank you.

I do have another person, the primary caregiver, also a family member. We usually handle the "heavy lifting" tasks together. She doesn't seem to be as affected by this as I am, we've talked about and she knows it's gotten harder for me. It's difficult to hold conversations while we're working, though, because we have to focus on the tasks we're doing - communicating while we're working.

[Skywalking]

Originally Posted by hannabee

Head phones was also my first thought. Can you bring her something sweet maybe those packages of "smarties" that have plenty of small bites?) to keep her occupied while you are doing your duties. I took care of a woman for about 2 years and she finally passed away at home with the help of hospice. If they have not be called, they should be. They are a tremendous help. Big hug and bless you.

We do try to give her ice cream sandwiches (she loves those) and Ensure shakes (she likes those too) to eat or drink while we're doing personal care, but sometimes we have to remind her she's holding food and encourage her to eat. Most of the time she is spoon fed. She forgets that she has food in her hand and can't handle silverware anymore.

We do have a hospice line to call when the time comes, but despite her mental state and advanced age, she currently doesn't have any life-threatening conditions, if that makes sense. She's declining but not at the point of dying. We've had home health when needed and take her to the hospital if an illness arises.

Thank you.

I really don't think there's anything I can do to change the situation. Mostly it's more about, "What can I do within myself to deal with this better?"

[hannabee]

I think that you need to stop thinking there is a better way to deal with this. There simply isn't. You wouldn't be human if you weren't affected by it. At the end, for Helen, I really couldn't stay. I went while they administered the final dose of "who knows what" and I heard the death rattle in her throat. I left her side to her children at the final moment. It will probably stay with me forever. Dying and all that it entails goes with living. Maybe try to think of all the good times you surely must have had with her. Zone out a bit, if you can. Try to replace sad thoughts with happier ones, and if you are religious, believe that she will pass to a better place. and this too shall pass.

[Skywalking]

Originally Posted by hannabee

I think that you need to stop thinking there is a better way to deal with this. There simply isn't.

Oh. Wow.

You're right. That hadn't even occurred to me.

That might sound strange, but...thank you. I don't know why that helps, but it does.