Measuring caregiver stress- I'd like to share this recent experience...
I'd like to share this recent experience with the caregivers who feel guilty when they put their parents in assisting living or another type of care facility, or bring in help to their homes. My mother, 97, is very easy to take care of. No trouble yet with her personal ADLs, no need to lift her, she moves around with a walker. But after a few years of "being on" all the time, you get exhausted without even realizing it. And you feel guilty when you just long to stay in bed in the morning as long as you want to...or you dread her next doctor appointment because you have to get her in and out of the car twice, up and down the ramp twice, probably to the ladies' room at the doctor's office once or twice... I have felt generally pretty bad for at least a year. Then in November I had a health emergency involving two surgeries, a week in intensive care and three weeks in rehab. My mother went into assisted living, as her doctors and mine agreed that I would no longer be able to care for her. I lay there in the nursing facility letting the nurses take care of me and started feeling better and better. Incision and surgery-related pains aside, I felt as if the IVs were pumping me full of something called "good health." Physical rehab went so fast that the rehab staff later referred to me as a miracle cure. All these good things are the measures of how terrible the stress had become before my surgery. And I didn't even realize it. And my situation was much easier than that of many caregivers. So watch yourself. Pay attention to the folks who tell you to take care of yourself. And start looking at local care facilities before your parent needs one, so that you have a plan if the need arises unexpectedly. Good luck and warm hugs to all of you.
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Thank you for sharing your story with us. I think we all need this gentle reminder. Your mother is so lucky to have you, but at the same time I'm glad you are focusing on your health now.
Dear Eileene,
I am so sorry, I know its hard when you are feeling like there are no options. When you mentioned the resentment that really resonated with me. Please listen to the others here and know you do have a choice. I've always been the dutiful one in my family but now after losing my father and grandmother, I, too realized how resentful I was about my daily responsibilities and feeling stuck. I hope you can find some options that might alleviate some of this stress.
Loosing your temper, loosing your health, loosing your mind, loosing your marriage.
Don't go there.
Go back to your third sentence. You explain that because of your husband's medical history he is unable to walk without assistance. But then you follow that with "my presence is required 24/7."
Well, *somebody's* presence is required, sure, to keep your husband safe and assist his activities of daily living. But why yours, specifically?
There is respite care in facilities. There are hired caregivers. There are family, friends, support groups. Other than perhaps that your husband turns his nose up at these options, is there any reason why you can't take occasional or even regular breaks to do things that are important to you?
As my friend said, since I'm not even allowed back into the medical examining rooms anymore, it would strictly be all about transportation, and the ALF provides that, so there is no reason for my involvement in transportation.
Your question kinda' got lost in the thread.
"How do I keep my Alzheimers' husband from urinating on the floor (carpet) during the night even while wearing Depends? He pulls them down and pees on the floor, then pulls them back up. Of course, can't convince him that he doesn't have to do that."
My mom did the exact thing your husband is doing-took off her pajamas, pulled down her diaper and urinated on the floor but only during the night. Thank God I have tile floors instead of carpet! This, for us, was the beginning of the end of Mom living with us.
We tried taping her pj's on (sounds mean but desperate times call for desperate measures). We wrapped duct tape at the junction where the shirt meets the pants. She wouldn't be able to "unwrap" herself and needed one of us to "unwind" her. But she was a stubborn lady and she would persevere all through the night. I slept in her room with one eye open (another contributing factor in her not living with us anymore). She'd get out of those diapers (mostly dry) and pee in the bed if she thought I was looking. She also had us get her up multiple times a night. (Yes, we had her tested for a bladder infection.) Night after night of this is beyond human tolerance.
Yes, you could try a condom catheter, as was suggested. If he's anything like my Mom, it would be pulled off within seconds. Because of his confusion, an indwelling catheter is NOT an option. (You can cause trauma to the bladder and urethra if you pull it out with the balloon inflated.)
The final straw was when she was incontinent of BM in her diaper also. That could not (and would not) be tolerated if she "let go" of that on the floor. I'm sorry to say, at this stage, I can't see any other option other than placing him in a facility that can handle this type of problem. It has worked out well for my mom and my house doesn't smell like a urinal anymore. It got to the point where I couldn't tolerate the smell, even with all the bleach and cleaners every day. And I certainly wouldn't have company of any kind in a house that reeked of strong urine.
I'm sure you'd rather have him at home but there comes a time that you can't physically or mentally take it anymore. You could try getting a urinal and offering it to him when he stands up. But then you'd have to be awake every time he gets up. You will be exhausted. Good luck. I wish I had a "magic" answer.
You are wise to recognize the need for self-care and mental-health care. AND you are acting on it!
True story: My mom’s sister-in-law spent her last decade in a beautiful, top-notch AL. About 20 miles from Mom and StepDad.
SIL was a battle-axe old-maid with more money than she knew what to do with. Over the years, SIL’s family ties and social network (once large and robust) dwindled. Due to geographical distances. And SILs peers dying or experiencing limited mobility, no longer driving, etc.
I suspect SIL’s “strong personality” contributed to her shrinking social circle in old age. SIL was career military, highly accomplished, very exacting, well-traveled, etc etc. And woe to anyone who did not meet her standards.
SIL thought my working-class mother was beneath her. And made little effort to hide it. Enter the AL years. My mom became SILs laundry connection and errand-runner.
Why???? Both of their sick dynamics in overdrive. My mom was determined to “be the bigger person” and show the world that she was there for BattleAxe when everyone else dropped out or couldn’t make the drive anymore. BattleAxe was richer than God and could SO afford the AL’s laundry upcharge and could SO hop on the AL’s daily shuttle to Walgreen’s, Target, Whole Foods, doctor/dentist, etc. But preferred having a personal servant.
As they say, hindsight is 20/20. Those 10 years Mom spent as SIL’s pawn turned out to be the last good years of Mom’s life. Shortly after SIL died + settling her estate, my Mom started going downhill.
The moral of my long windy story is: Don’t get so wrapped up in others’ needs (fake or real) and guilt and manipulation that you lose sight of yourself, your core people and your core truth.
Mom was so enmeshed in martyring herself for her in-laws that she back-burnered her only sister and my household. Most of our attempts to get together with Mom were met with “too busy,” “ too stressed out,” etc.
Mom was convinced that “we understood.” We did.
What we also understood — but Mom lost sight of — was that Mom’s level of participation was her choice. Not fate. Not an accident. Her choice.
Again, no one knew it then, but that was Mom’s last decade of having full mobility and dexterity, thinking clearly and being able to drive safely.
I’ll never know if Mom regrets not allocating more of that time to her sister and me and my household. I know we sure regret it.
But it is so nice not to worry about laundry, bed linens, food, meds, doc appointments, cleaning etc. Not to mention no more of worrying about Dad driving around getting lost and all the issues with a falling down house.
My life has been sooooooo much easier the last few weeks.
I’m heading south Saturday and will spend next week dealing with the house, car etc. also meeting with a realtor. Any money I have to spend on property taxes, grass cutting, utilities and upkeep of that property is just money down the drain and less money for my folks care down the road.
She said I was a nasty person, and that I didn't do much for her at all. She then said that she did a lot for me, more for me than my brothers? (??? Sonny No-Show lived with my parents until he was 29; the rest of us were out of the house after college! And I'm sure Sonny No-Show didn't pay rent!)
So it's pretty clear she thinks that I owe her (and my brothers do not). She tells everyone she is too "independent" for AL. She can't drive, can hardly walk, has short-term memory problems, hard of hearing....yes, she's "independent" all right...
(I did email the documentation to the FDA, making it very clear they are to communicate with my mother through USPS or telephone...NOT email to me. My mother gave me a $20 bill. I didn't want the money, but thought if I didn't take it, the precedent would be set for me to do more of this sort of nonsense. By taking the $20, she will not want to ask me to do something again -- hopefully it's a deterrent!)
Mom is in AL now, and not particularly happy. My sister is considering taking her to live with her and the rest of us siblings are encouraging her not to - for exactly the reasons you state. As you point out, even if Mom is able to do a lot my sister would still be "on call" all the time.
Your story encourages me to keep encouraging my sister to not feel guilty if Mom stays in AL.
I do take care of my parents! I coordinate their medical care, financial (bill paying, talking to insurance, etc), general life planning (I’m a detail person) and overseeing both parents’ general welfare. My parents did save a good bit of money and their needs are met from their own funds.
I take care of myself, with the assistance of my healthy husband (he does chores around the house and shopping, etc). My grown daughter cleans my house once a month and I maintain the light housekeeping. I drive too. I need a cane to walk or better yet, a shopping cart, and I can do short shopping trips,pharmacy, car maintenance....
My daughter and my hubby are angels and I thought I had life organized around my own limitations while keeping the family happy until my mom went ‘off the deep end’. It took about three months to get her diagnosed and new meds and she’s in a AL facility now. Dad’s at their manse WAY out in the country. He’s doing pretty well. But things are eerily quiet and peaceful the last week. No repeated phone calls, reporting every little grievance. I wonder if a recalcitrant relative is plotting with my mom? Something will happen and it’ll be weird.
sorry for the complaining, I know other people have it much worse.