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

Thanks for sharing that. An excellent case study of caregiving and it’s effects. I assume the NH for mom is permanent?

Encouragement based on real experience - and even a happy ending! Can't think of anything better to put heart into caregivers facing difficult choices. Thank you, and well done.

realtime, so many of us usually wait until we crash and burn before realizing how much damage the stress has causing us.

I remember breaking my arm in a fall, worst pain EVER, no cast but had to wear a sling all the time. The sling was helpful in letting my parents know I wasn't able to do the routine things to help them.

When I was in rehab, the doctor's office was across the hall from my office, the doctor wanted me to stop using the sling so that my arm muscles would stretch. Then I mentioned my aging parents. He smiled and said it was ok to use the sling while visiting my parents :)) I wore that sling for 6 months. Hey, I was senior citizen, too.

Breaking my arm was a welcome relief as crazy as it sounds, but I wouldn't recommend it :P

Yes, Windyridge. She'll stay there permanently. Actually there's more to the story. When I went to the hospital, she went into respite care at an ALF nearby. On her first day there, she cracked her pelvis --- apparently a compression fracture, not a fall --- and also ended up in the hospital and then in rehab. She herself realized that even if I were in good health, I wouldn't have been able to help her if she became bed- or wheelchair bound. And my problem really scared her, because she realized that my health wasn't reliable. I'm 74, for heaven's sake!

So actually, the two problems --- my surgery, her fall --- were lucky. They forced us to make big changes immediately instead of worrying about what we'd do in the future. And we had realized that some months earlier --- we weren't completely unprepared. She had already chosen her preferred ALF, the family had already taken steps to offer her property for sale --- gotten surveys and appraisals for our own decision-making, regularized 90 years of error-filled deeds, interviewed brokers, interviewed estate sales agents, begun planning the logistics of a future move. In fact, I had two broker interviews scheduled for the afternoon of the day of my collapse; but my out-of-town brother and I had been coordinating so he picked up where I left off and moved ahead. (Up until then, I handled local matters, he handled financial and legal matters and took our mother on an annual month-long vacation.)

Another place we were lucky, and I realize that not everyone is in the same position, is that we had a support network. Two dear neighbors stepped in with my mother for the couple of days until my brother and his wife arrived; a local cousin (caregiver for her elderly mother) took over as my advocate at the hospital, as I was unconscious; and my out-of-state daughter got here before my mother's accident, took over "project management" of the whole thing, and stayed until I was in rehab, conscious, and mentally tracking. The three local ladies were heaven sent, and I hope everyone is as lucky with their networks.

Sorry for writing so much. I'm still processing what happened mentally and emotionally, and it's been two months since my collapse, a month since I got out of rehab.

Oh, frequent flyer! What a wonderful doctor you had! I confess: I still use a cane when visiting my mother. I probably could do without it safely (I came out of this with some balance issues) but I figure the message is useful. And no, I wouldn't recommend abdominal surgery either, but I do recommend growing a spine and standing up for yourself before breaking any bones!

This post hits close to home..a dear friend passed away last week at age 74. He had been 24/7 caring for his wife for the last 15+ years. No aides, just a housekeeper a couple times a week. He literally wore himself out caring for his wife. Everybody just assumed the wife would die first, she has literally had severe health issues all her life. I've never known her to be "healthy" and I have known her 40 years.

I know he would never have had his wife placed in a SNF, ever, and he paid the ultimate price for his loving care.

Your post was a real wake up call for a lot of us. I know my hubby will not do well in his "dotage" and I am already feeling frightened for that eventuality.

I'm glad that you and your mother are both doing better!!

Wow, Midkid, I wonder how your friend's wife feels? Would she even see that his constant care of her contributed to his eventual collapse? How horrible to pass so young.
I'm sorry for the loss of your dear friend.

Hi, Midkid, what a sad story! And now she'll have to go into a facility anyway, without the comfort of having him nearby to visit.

realtime: what a great post and warning to us all! I thoroughly understand what you mean how much just "being on" all time. I've mentioned that to my siblings who don't get it, even though they've cared for Mom too. I've had a couple emotional meltdowns--I have a lot going on in my personal life that has to go on the back burner. Since i've been here, the siblings seem to have forgotten what it's like--though Mom was more self-sufficient than she is now. They both have no idea of being trapped inside a house dayafterdayafterday without letup. It does take toll on us!

When I do get a day off, it's amazing how light I feel just being free!

realtime (((((((hugs))))) wow -just wow. It all fell (no pun intended) together so well. Glad you and your mum are recovering. Keep that cane!!!

Sue & Realtime---

My friend will probably move in with one of her kids now. Her hubby has cared for her for the past 15 years with no help. She's been wheelchair bound for that length of time....I am positive she feels horrible, since he was always strong and healthy. She never was, ever. We're on our way to the viewing now and I am so saddened and scared by the thought of him dying so young--but evidently he did have some underlying very serious health issues we didn't know about, as she was the one who got all the "attention". Not to speak ill of her at all, she is the sweetest most loving and giving person I think I've ever known. She couldn't help having all the health issues she had! She's only 71---and could live for 20 more years, despite all the bad health issues. I'm just so sad today.

It's interesting...in mental health therapy, the therapist often wants to see the other people in the family (at least a few times). They want to know how the family system operates.

No such thing occurs with elders' physical health, though, does it? Most here get to go into the doctor's with their elder, so there is the opportunity to speak up, but the medical professionals usually don't care, correct? They are only focusing on the elder patient.

But so many caregivers make themselves sick and even die. Or they become very resentful. These results will have effects on the elder patient. Their care can be compromised. But I guess the medical professionals don't really care, because no one wants to delve into any real solutions for this growing crisis. And the Medicare bucks keep rolling in for these elders! So the medical professional use that trite phrase, if they say anything at all to the caregiver beyond issuing yet more duties -- "Make sure to take time for yourself." Yeah. Haha!

OP back. My situation may have been easier because my mother and I share a primary care physician. I understand that he spoke up about my not being able to care for my mother any longer, no matter how complete my recovery from the immediate problem.

Realtime, I am glad you are recovering well and that you found a place for your Mom.

When they say to take care of yourself because of caregiver stress this is very real and not to be taken lightly. I had been caring for my Mom for 17 years and then it got very bad the last two years before she passed away. While I was caring for her 24/7 and she was bedridden in my home on hospice, I suddenly, for no obvious reason, went blind in one eye. A spontaneous retinal detachment! I remember cleaning her and putting briefs on her, emptying the catheter, bringing the dinner tray, and wondering why I could not see out of one eye. It was frightening. I got to an eye surgeon and had the surgery, had to keep my head down for 10 days and sight took a bit over 2 months to return in the eye. It came back as well as it could the very day my Mom died. I will always have scar tissue and wrinkling in that eye to remind me how full on caregiving can tax a person. During this time my husband went A-fib too from the stress. We had had bad experiences with 5 star rated nursing homes for rehab for my Mom and that is why she was at home. If caregivers can find help and a back up plan please do so in case it becomes too much. I will always have a reminder in that eye of the rough time I went through.

Good information, something I needed to hear. What does ADL stand for?

Realtime, thank you for posting your story. I’m glad you are ok and now are able to have a bit of relief. I don’t have the extra burden of my dad living in my home but just being the only one responsible for his caregiving, finances etc. has made me feel older than I am. I’m pretty good at boundaries but I’ve also had to place more of my personal goals on the back burner because this past year has been a doozie! Between my dad's hospitalizations, falls, rehab stints and eventual move to LTC last week I’m exhausted. Coupled with my husband’s health issues he had and mine it’s like I don’t feel I can catch a break. When I was told I had to move my dad to LTC within one week, I was newly sick with a bad cough. But move everything I must. My husband and I did it all, I was up there so much I was sick of the place. My oldest sister flew in to visit him and having company added another stress. So this week I’m trying to lay low and recover from my lingering cough and get some energy back. I do know at times I have felt like running away. Really no one gets it unless they’ve been there too.
It’s funny but we think we can just soldier on and that we can do it...but the body won’t lie. Thankful for this support group which understands.

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.

Thank you for sharing your story, realtime. You are so fortunate that your mother and your siblings and YOU, have a relationship where you actually deal in reality. My MIL & FIL, who are 80 & 85, are caring for her mother who is turning 102, this year. Up until about a year ago, they only had to take care of the house, make her meals, get her to and from appointments, etc. Now they have to help her to the bathroom multiple times a day/night, manage her incontinence, etc., and both are starting to wear down. FIL was hospitalized for prostate problems in December and MIL was experiencing some cognitive issues due to stress and was also hospitalized for observation. NONE of them are admitting that caregiving is causing them to decline rapidly. No outside help has been hired. No plan for AL or NH. Nothing! They refuse to discuss any of it, especially FIL as he feels it is his DUTY to care for grandma. Even though MIL is taking the brunt of it. It is a sad thing to watch, but it is all any of us can do. We've all put our 2 cents in (husband, 5 sisters) and all FIL says is that we need to stay out of their business as there are "too many hands in the pot". Funny thing though, if and when something more serious occurs, all those "hands" will be required on deck!

Anyway, you and your mother are lucky ladies, indeed. Wishing you many blessings!

Warm hugs to you, realtime. Wishing you a full recovery as well as peace and comfort.

Real-time, thank you SO much for your post. I am the full-time and only caregiver for my bedridden husband. I have some relief when I babysit for my grandsons. Hubby is able to stay on his own for a few hours although I worry.

Last year, he was in hospital and rehab for 4 months. It was an absolute vacation for me even though I didn’t go anywhere! I got up in the morning looking forward to the day. I cleaned, I knitted, I read, and like you, I felt energized and relaxed. And, I’ve felt guilty about it ever since. After all, this is the love of my life! But I feel so much better after reading your post. My regret, though, is that we cannot afford for him to go to a facility because we both know that’s where he belongs.

Thank you for sharing your story. I’m glad everything worked out for you and Mom!

ADL is activities of daily living.
Dressing, bathing, toileting, eating, transferring, as I recall.

Gloria - check into condom catheter as then this could help

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).

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.

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.

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 :)

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.

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

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

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.