My father has multiple myeloma and has recently found out that his body has stopped responding to treatments. He also suffered a series of strokes two years ago due to the chemo he was taking at that time - this left him very difficult to get along with. My mother fell and broke her elbow not too long after his stroke and she has struggled to get her balance back since the replacement surgery. I work full time & have two kids in college that still require a lot of my help. I drive my parents places to get them out and check on them every night. I take them to their Dr appointments and do the majority of their shopping. Will I ever get to the point and take time out for myself without feeling guilty or worrying sick about them?
Yet, long ago, a very great being told me that each person's primary mission in this life is to love, respect and honor ourselves so that we may then honor others. I hear this teaching each day and try to balance my health and well-being accordingly.
It is not easy, but I remind myself that if I don't take good care of myself, get sick or remain stressed and tired, how can I offer support to others?
I have learned to say I love you, but today I cannot. I am getting better at saying all versions of: NO, not now, maybe later, tomorrow, I need to rest, I need a day off, etc, etc, etc.
It feels very good to finally INCLUDE MYSELF in the group of the people who I am helping!
My mom is in an AL but I still feel I need to go daily, check to make sure the facility is doing what we are paying them to do... and then I do some of it myself anyway..
I fear going away, cause Murphy's law says "That's when something will happen to her".
I get the same answers, take care of yourself, you should come 1st .. but it is easier said then done..
I feel it is easier on me to take baby steps taking time for myself, although i do think if they can afford it, some in-home help would be a big relief on you...
We had one 2 hour evening outing recently (that started at 8 pm!) but I was so tired that I just wanted to stay home. I drug myself to the event and was so glad to pour my tired old body into bed that night. I guess all our outings will have to be during the day!
So far, hubs and I have been taking turns going out for errands but no "dates" anymore. I miss going out to lunch, going to the beach or just being together without having a hundred questions or screaming interfering with our conversation. It's impossible to take mom anywhere due to instability and total confusion and anxiety.
We'll need to get better about getting out because our nerves are shot and we snap at each other and at mom sometimes. There is just so much more to do since she's been here and I'm working 2 days a week also. Yeah, I know, excuses, excuses.
Gotta' get our priorities straight!
I'm so sorry everything is so hard right now. I hope you get over your cold real quick. You are right, rest is the best healer. People don't respect the fact that sleep is restorative and regenerative. And it's all natural and is easy to accomplish (except when you're the 24 hour caregiver.)
In our society we have an unrealistic vision of what a caregiver is 'supposed' to be. We are never supposed to loose our tempers, have infinite patience, unlimited sympathy/empathy, work all day and all night without complaining, postpone meals (or forget about them all together), be cheerful wiping stinkies from bottoms, walls, etc., show our loved one that they are loved beyond belief.
Wouldn't that be great if we could live up to that image? But, unfortunately, we are human, with all the shortcomings of growing tired, resentful, irritated, angry, furious, resentful, anxious, loosing our minds, unlovable, hungry, impatient and b*tchy. The fact that we are trying to live up to a hugely unrealistic vision is our downfall.
WE NEED TO JUST DO THE BEST WE CAN. That's all anyone can ask of you. Get rid of the guilt. You are being human. You have 2 sets of emotions for the job you're doing. Of course you love this person deeply but it's OK to be p*ssed off about having to wash the laundry for the second time that day! You're mad because it's inconvenient, not because you don't love him anymore, even though HE is the cause of your extra work. You know your husband would have the same feelings that you do if the tables were turned. He's no different than anyone else.
Cut yourself some slack. You wouldn't be doing this job if he didn't mean the world to you but it's OK to be mad that your whole world revolves around caregiving and that you don't have any "me" time. Love and frustration CAN go together.
Does your husband suffer from urinary incontinence? (Why the sheets are wet?)
Has anyone recommended a condom catheter? It does NOT go inside the body but rolls on (like a condom) with a tube at the end that drains into a bag. It's secured at the base of the penis with a special tape. It's then taped to the leg and the person can move around but the urine goes in the bag. It's not 100% fool proof but sure a lot better than nothing. It can be purchased at any medical supply store.
Also, a urinal at the bedside or propped at the groin might help your situation.
Hope this helps.
That said, just do it because the only way the irrational guilt will go away is to practice going out and away. You will feel the benefits of taking a walk, for example, or going out for lunch with friends. This will make you feel good about yourself and help you to rejuvenate so that you are not a burned out zombie caregiver.
There is much more to life than caregiving. Practicing going out or going away is part of developing healthy boundaries with everyone in your life because caregiving must work for everyone involved.