This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
I went to the church mass (forgot the Catholic word for it - Oh! Mass of Intention) on Saturday and Sunday. It's very awkward to not participate during mass and try to remain respectful to the Catholics way of worship. Everyone stands, I'm still sitting. Everyone kneels, I'm still sitting. Even by sitting at the last pew in the back, I stick out like a sore thumb. I'm reaching a point that I will tell family: I'm not a Catholic and going to your mass is really uncomfortable for me... I didn't go tonight. Nor am I going tomorrow night.
I got my first IRS scam call yesterday. I suspect they have been calling for months. I DO NOT answer my phone if I do not recognise the number or shows unknown/unavailable. If they want to speak with me they will leave voice mail. Yes the IRS collect voice mail. Now that number is blocked. But, after blocking another call came through that showed the same number.
Did I wake you up?.. Yes... oh! I woke you up? ... Yes ... ... ... and then he continues talking. I stood there answering single answers . Yes.. no ... no ... {oh nooo this is not going to be a short phone call!} .. I pulled the phone away from my ear and glared at it as he continued to talk... I walked back to my sofabed and laid down as he continued talking. .. debating if I should just hang up on him. Nope, he’ll just call back... or drop by unannounced... I laid there with the phone away from my ear as he continued to talk. Oops, he asked a question. I didn’t hear the words... well... I’m no longer sleepy.
Now however her body is beginning to shut down. Sleeps more than awake. Hasn't eaten in a long time and is now cutting down on when she will drink something. Too weak now to get out of bed. Last couple of weeks trying to use lift to get her over potty chair or even lift her up enough to put the bed pan under is useless. She was going before getting in position. Twice had to spend 3 hours sucking up out of carpet and washing and deodorizing the carpet. Gave up and told her to use the diaper and it is ok. She didn't like the idea but came to conclusion herself she could no longer control it. Last 6 days Urine is dark and grainy. I suspected it is the progression. Hospice said that is the kidney not filtering and I was right.... First signs of end of life organ shutting down unless the bowel lack was the first. But she appears to not be in any additional pain that doesn't go away after she is done "urinating" or as she puts it "I'm peeing my britches!" She can not complete a full long sentence without voice going to a murmured mumble. Even if I repeat what I heard clearly enough she will not take up there but tries to go back and start over or just sighs and either stares at me or turns away or shuts her eyes. She no longer calls out to me at night. I hear over the walkie talkie (baby monitor) If she picks up things on the hospital type bed table. (Water bottle, Kleenex box etc or if I hear the straw slurping) or if she drops one of them.
Last visit Hospice Nurse said most people will last less than 2 weeks when it shuts down or they go into a comatose state and I won't be able to waken her. Yet though I sometimes feel down for an hour or so I am surprisingly doing well and when she is coherent so is she. So I do talk about how I SEE she is ready and anxious to go to her reward. How wonderful her reward will be and God will tell her she has been a good and faithful servant. That I will be ok, maybe a bit sad for a bit but I know where she will be and someday when God says HE is READY for me I will join her. But I also tell her that evidently HE isn't ready for us yet because she is still here and so am I. She smiles and nods. "His time, His time." comes out clearly.
Bettina, I remembered being sooo tired all the time. The worst for me was the mornings. Too exhausted in the mornings and wanting to sleep in late, every day. Months after my bedridden mom passed away, I took a trip to Hawaii to getaway for a while. Dad was bedridden, too. I was so mad at myself. I still can't believe I spent so much money on the hotel in the middle of Waikiki - to rest all day in the hotel room! My body finally crashed after 20 years of caregiving mom. I was too exhausted to walk far anywhere in Waikiki. Your comment reminded me of that time. I spent most of my week in my hotel's bed! You have it right, though, about craving the bed - whether we want it or not. I hope something good will happen to give you some respite from the exhaustion.
If it is more "fun" to stay home and watch a movie - so be it.
My last parent passed almost 2 years ago... my gosh, I can't believe it has been that long. I haven't recovered any of my energy. Doctor said it is just age, I though 70 was the new 50? What a laugh.
And I feel so frustrated because my parents had over 25 years of a wonderful retirement. Lots of travel, dining out, going to the movies, visiting relatives, etc. Well, I had to toss out my bucket list. I developed panic attacks while helping my parents, thus flying is out, so is long car travel. Forget dining out, I find it just too noisy. Movies, rather watch one at home. Oh how I long for the days when my sig other and I use to hike for miles.
When people go on vacations I ask about how the beds are. I want to fantasize about sleeping on a nice fluffy bed in some beautiful exotic locale. Exhaustion is making
me a total weirdo. :/
Smeshque, thank you for your prayers….I can sure use them but am not giving up. (smile)
Book… Tums do the same thing to me but I am can’t be sure as I have IBSD so I basically live on Immodium AD. I love pickles and love the juice but have to restrict the amount that I eat as they give me indigestion….ugh. I still haven’t tried the ginger though. Will keep y’all posted.
I read about the ginger. Since I rarely have real ginger in the house, I actually bought ginger tea. It’s still unopened. Eating ginger causes me to burp it up for hours. Don’t know if that’s a normal to eating ginger.... I just need to be careful with what I eat/drink.
Dusti, I thought it was drinking pickle juice daily that helps some people with acid reflux. Or worsen for others. Since I don’t like pickles, I never tried it.
Book... sorry about the late response. Yep my eyes are wide open. One thing at rehab today I signed the permission papers for a psychiatrist to do eval on my honey for his meds. Hope they can find out why the sudden personality changes and get it resolved before I bring him home on the 14th.
Book and Freqflyer...I hate acid reflux. I have had it so bad that I nearly choked to death and my honey had to pound me on my back before I could start breathing again. (prior to him getting so sick). This is one thing that scares me about being alone here. When it hits that bad I cannot breathe in or out. So praying it stays away. Sounds like y'all have found some good solutions.
Have a great night.
For me, for some reason I now get acid reflux from peanut butter. Never had that problem in the past. Probably from the oils used in making the product.