Measuring caregiver stress- I'd like to share this recent experience...

Scared, any hope of having them both go to AL? The one we have here takes couples, and it's not as expensive as in home caregivers, I don't think (depends on where you live, I'm sure). Sounds as if you're near burn out, and that would be horrible for all of you!

Cleaning my e-mail out and see that I had made 2 brief comments back in January! Lord help me. 🙏🏻🙏🏻

Tell me about it. I've never had more stomachaches and headaches and been more sick than I have in the last two years… Besides caregivers that I have Monday through Friday I'm the main caregiver of me and my sister (she lives out of town) for my parents. My mother is 89 with Alzheimer's and my father is 94 for the most part ok but getting forgetful and testy. She won't use her walker and they start fighting. This is day two of bickering so I know what the rest of my week or be like.

Dear realtime,

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.

24/7 assistance is a loosing road.

Loosing your temper, loosing your health, loosing your mind, loosing your marriage.

Don't go there.

Eileen: You absolutely NEED to join a club or a church group or a painting/wine group and that's it. Your husband can learn to use a wheelchair when you aren't there to get around. Or a walker (maybe?) or hire somebody for $20 per hour once a week (can you come up with $40?)  Otherwise if you have low income there are options out there for assistance.  . He needs to be independent and so do you. Otherwise there will be a big explosion someday that can be avoided by making time for yourselves.

Eileene, there most certainly IS at least one way out.

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?

Most of the posts have been related to caring for elderly parents. I'm 65 and my husband 66. He has a significant orthopedic history and is unable to walk without assistance because of imbalance and my presence is required 24/7. He is unable to do anything independently. He is a type A personality and had always been a very difficult person to live with. We both worked long hours so could enjoy the little time we actually spent together. It seems that he does things to actually make my life more difficult. He is healthy and comes from a family who live long lives; I do not. I'm healthy but cannot go on vacations, visit our two new grandchildren, spend time at the beach. I am so resentful. I've always lived being around people and he has not....no friends, etc. I see no way out.

BlackHole: " 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." I suspect this would be my mother if she ever moved into an ALF. I think she would suspect she is actually slower and more compromised (even though she can only see out of one eye and can't hear well) than many of the other residents. She wouldn't want her deficiencies showcased on these shuttle runs, and would expect me, her Dummy Driver Daughter, to take her places. This is something that would be discussed before she moved into the ALF. Transportation is part of the ALF fee, so she can't be paying THEM and expecting ME to do transportation. I imagine there would be an epic crying/shaking fit and I would be told how horrible I am.

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.

I'm learning that there's a whole supportive world out there. It's astounding how many people standing next to you in line at the grocery store, seated next to you on the plane, etc., are going through something similar. Recently three casual conversations with strangers turned into deep discussions of these issues, and especially caregiver stress. If they're new to it I always recommend this forum as a resource.

Thank you for your kindness Realtime. Yesterday my husband and I finished cleaning out dad AL apartment and things are ready for donation pick up. I can finally put a period on that. So yes I do want to get away somewhere and hope to do that. Still dealing with some health issues and want to feel better. Thank you for caring. I’m lucky to have a supportive husband.

Oh, Harpcat, My heart goes out to you. It's a huge adjustment. I was lucky in that my hospitalization created a total break from what I'd been doing. I was either unconscious or under sedation for several days and spent a lot of my time sleeping for several more. Is there any way you can create a real break for yourself --- something that marks a dividing line between before and after? Not just taking the time off, but going somewhere else, doing something special for yourself? You have my warmest sympathy.

Wow Blackhole, what a great post. Yes, we can get so caught up in caretaking and caregiving that we do injure our health. I've had an incredibly stressful year in 2017 (and part of 2016). and lots of health issues. I truly feel they have been exacerbated if not caused by stress from dealing with my dad. After moving his things into room into LTC last week while sick with a virus and still downsizing his stuff to donate, I took a week off to do nothing but rest and get some energy back. I want to feel good again and it seems like reaching for a star way out in the universe. I often wonder if I’ll ever feel good again as I’ve forgotten what it’s like. And this from someone who tries to take care of herself. It is not fair and I resent it.

Hi Gloria,
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.

Realtime, thank you for your honesty. And for reminding us that boundaries need constant maintenance.

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.

If affordable I strongly recommend having the AL staff do EVERYTHING! I have no choice being so far away.

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.

Wow, realtime. If my mother goes into an ALF, I do NOT want to be responsible for her laundry or taking her to doctor appointments. I can see that phone situation happening. They don't provide landlines in ALFs? I really don't want to visit more than once a week for a short time.

With that in mind, I just made an appointment to talk to a psychologist, and bought a lamp that's supposed to reduce Seasonal Affective Disorder.

I'm really glad that my experience was helpful to some of you; your experiences help me with the on-going adjustment. I wasn't entirely realistic about being able to lay the burden down. We've had some bumps in the road. My mother was sure that the laundry at the ALF had lost some of her clothes; she raised a big fuss over it. I found the clothes in her room, but it was clear that deep down, she wanted me to do her laundry --- probably so she could have one-day turnaround on it. Then there was the fuss of getting her a direct phone line in her room. This wasn't her fault (although once we started the process she became very anxious to get it done), but I spent hours on the phone dealing with the phone company over a week's time before getting it up and working yesterday. (Then she couldn't figure out how to use it. An absolutely standard old fashioned land line.) And then there are the doctor appointments...and fixing up her room...and and and... I am learning that it's on me to construct a new routine around these different obligations. I haven't been doing a great job of it...I've gotten very depressed. The sweet neighbors are still there, but I don't want to become their "mission." My daughter, whom I miss most of all, is again 700 miles away. I got up this morning reminding myself "IT's ON ME NOW." No excuses.

I am in the same situation as you were in. My mother is 92 and is very independent. Sometimes when I complain, I actually wonder why because I have it pretty darn good for caregiving. But still, everything health wise is going south for me and my whole wellbeing because of my lifestyle of just being a caregiver. I don’t think I am going to feel the least bit guilty when I have to put her in a nursing home and finally reclaim my life again. But I sure will miss her around here.

My mother should be in AL. She muddles through her day, depending upon me for transportation and occasional other help. She was very angry that I wouldn't email her "documentation" to the FDA for their supposed investigation of her B6 toxicity (which she didn't have...refuses to listen to reason. She has called the vitamin manufacturer, a newspaper reporter, a med malpractice attorney, the FDA, NIH, the state board of medicine, the local medical school.)

 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!)

I have VOWED never to put my child into this position. I sincerely believe that not going into assisted care when necessary is a selfish decision on the parent's part. Taking care of an elderly person who is unable to physically and/or mentally able to take care of themselves is much more emotionally and physically draining than taking care of your child growing up. The elderly need to realize that assisted living is NOT giving up your independence but rather maintaining it.

I am starting to wonder about parents who insist on NOT going into Assisted Care when the time has come. I have VOWED never to put my kid's families into this position. It is absolutely a selfish decision. I don't feel my child OWES me care because I took care of him as a child. That was my privilege.

Thank you. Slowly headed that way myself. Exhausted mentally and physically even with other help.

Good to know. I'm probably headed that way myself even with help.

Thanks for sharing your storing - it is very revealing.

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'm so glad you posted this. I realized it early on in my caregiver role and took action. But so many people don't. The excuse "I don't have time" takes precedent. So much so that I have read in some forums that the number one comment that caregivers hate to hear is "Take care of yourself". OMG. I was so upset to read that. So, thank you for sharing your story. I hope you both continue to benefit from the new arrangements :)

Realtime—Your Story is a startling one, I have never considered hands on caring for my parents because I am disabled myself but for children who are in their 40-50 year of age, they need to realize they’re vulnerable too. No one can keep up 24/7 care and not buckle under the burden!

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.

Yes, I can certainly relate as I am just getting over a sickness that lasted from before Christmas to last week. I still do not know what I had except that I have never been that sick in my life. And no one would help. Even her caregivers that come in while I am working were afraid that I had the flu and would not come and my sister said the same thing. So there I am telling my mom over and over I'm sick because she couldn't remember and couldn't understand why i was in bed. All I could do was cry. I cry just thinking about it because no one would help ME!!!!! I was devastated. How can my family even look me in the eye after this. Then my other sister flew in from out of and took care of me and my mom for a week although the only reason she came down was for my mom's annual appointment but she did help take care of me and I have to say I do feel a little better. I have an appointment Friday to see if they can figure out what was wrong but I can tell you it is I am exhausted between work and taking care of my mom it is just too much. My family will be sorry when I am hospitalized and they have to do what I have been doing for over three years!

sorry for the complaining, I know other people have it much worse.

It's apparent that what is happening is that some of our parents (or perhaps spouses, in-laws, etc.) are living into their mid-90s or longer, and as a result their children are also getting quite far up in years. The probability of dementia increases with age, so instead of 65 y/o taking care of 88 y/o who may still have their minds intact such as was much more likely to be the end stage a generation or two ago, we now have 75 y/o taking care of 98 y/o with the former perhaps developing some physical limitations and the latter probably quite infirm and likely to have at least some dementia. In light of this, I don't think there is any reason for caretakers, especially those in the second scenario described above, to feel guilty about needing to reduce the stress even if it means having the older person go into a facility (although human nature plus societal pressures tend to result in feelings of guilt).