Parent in nursing home or rehab, but you still have no peace...

My Mom had to go to rehab last year for a broken pelvis and back. She called constantly. She has Alzheimer's. They made me come spend the night there! It was awful. She couldn't figure out she could not walk so she kept falling. She's back at her house now but it was so bad the sent her to a psch. Hospital. I had no peace for 2 months. I'm so sorry so many of us have to go through this. Every illness seems to set them back so much. May we all have a peaceful 4th of July!

I feel this way when my Mom is in the hospital. It is more stressful than having her at home with me. I believe its something to do with the idea of "relinquishing control" for me anyway. I NEED to make sure she ate, took her pills, is clean and hydrated. I hope that in time you will have peace. It "should" get easier with time.
I hope you have a nice 4th of July :)

Poetry, I understand “no peace”. Mom has been in NH for 1.5 years now. Many ups and downs along the way. I used to go 3 times a week for a few hours, but since she lost her vision I now go daily for 4 hours and feed her lunch in her room. She hates the noisy confusion of the DR so she eats much more for me which is good. I had been really stressed and worried about her and her care the other 20 hours. The perverse thing was I’ve always been very happy with her care...but I worried myself sick nonetheless. Then suddenly one day a month or so ago I had an epiphany when I remembered that these folks are getting $10k a month. I dont know why this fact had such an impact on me but it was like a light switch went on in my brain. So I decided that when I’m there I will make sure she’s getting her moneys worth. I still think about her when I’m home, (and still jump at the phone) but I don’t worry about what’s happening nearly as much and find I can relax more. I hope you can find similar peace.

I think a lot of it is a control issue. People like us need to be in control and have a really hard time giving it up to what amounts to strangers. I worry about my kids who are both married and parents themselves. My son drives a large, black pick-up truck. About a year ago, on a main intersection near his house, a big, black pick-up truck was in a rollover accident. I saw a photo of the crash on Facebook. I was frantic until I could get a hold of him. He thought I was flippin’ nuts. I worry about my grandsons. One is having his first sleep-away camp experience this week. I’ve been stressed since Sunday. I’m not responsible for any of them, technically but if something happens I feel like I should have done something.

Somewhere along the line, we have to realize we can’t do everybody’s everything. We have to let go. It’s darned difficult. But you get to the point where you do.

I don't worry too much about my mom in AL. its the best place ever for her. anywhere else I would probably be worried. not to say nothings ever going to happen.
she fell one night and I got called at 3am or so. and she gashed her arm - got staples. it was gross tho. and she kept picking up her arm "im getting blood on my jammies"
uhh you got a big gash in your arm, put your arm down...

any way I do get uptight when I hear the phone ring at night. say after dinner hours...
and I try not to stay up too late at night, I fear I may get another call.

mostly tho. I do have peace about mom. its the other responsibilities that stress me out. for her, like: bill paying, taxes, bank accounts, dr appts, keeping tabs on RX's, buying personal items, also buying birthday cards for everyone on her behalf. ETC ETC.
ps I do worry about her dementia decline. I get scared for the future. oops rambling again.

By the time Mom was in a NH she wasn't aware anymore. She aclimated well. I eventually allowed them to launder her clothes since I was going away for a week. The Nurses loved her. She was clean, fed and cared for. I loved the freedom.

My Mom went to three different nursing homes for rehab. The first two were awful though rated 5 stars by Medicare. The third and final one was good and I trusted them to take care of my Mom though she declined steadily, and I finally took her into my home on hospice where she was bedridden and I did most of the care. I just couldn't take the 100s of people we dealt with during the 19 months of decline and we are very private people so she was much happier during her stay in my guestroom. It was the hardest thing I have ever done in my life and I suffered a retinal detachment during this time as well with an operation. The first nursing home tried to push too much rehab on her,the head physical therapist became snarky with me when I was concerned, and my Mom developed a stage 4 bedsore on her tailbone that became infected requiring many weeks of hospital stay, the second nursing home dropped her and broke her ankle on transfer to her wheelchair. They seemed annoyed with my daily visits though I didn't ask them for much. One crazy old nurse began yelling at me when I was concerned about something running up and down the halls and yelling for Jesus. I had had it and took Mom home. By the time we went through the 3rd rehab after the 3rd hospitalization I just wanted the quiet and privacy of home with a bath aide and nurses coming in without all the calamity of the nursing homes. There were the phone calls too. Mom passed away peacefully 2 years ago, but I still have great anger at the first 2 nursing homes and the losers that they hire. How they rated 5 stars is beyond me and I have lost faith in that system.

My poor Mom went from walking hwith her walker to 2 weeks having a TRAMA procedure to remove a hematoma in her leg, then to a rehab, now bedridden under hospice care. I finally got her home yesterday . I feel your pain. Too much confusion an noise in a NH/Rehab. She has declined so quickly and it so very very difficult to watch. I am a controlling when it comes to her care, but when you walk in and she is hanging off the bed hollaring for help, it was unacceptable. The only night I left her over the last 2 weeks was when the was in TICU and Stepdown ICU. Hospice is there for medical support but you are still the one to do most of the work. Believe me, I did this with my Dad, although I had more physical freedom, NO REGRETS . It is a difficult process but I am thankful she is now at home in as much peace as she can be. Hang in there as best you can.

Even though you can't always turn off your worry about loved ones in the nursing home you can at least reclaim a portion of your own life back, just being able to sleep through the night without being alert and listening for mom was invaluable. Giving up that control and learning to trust that they are OK in a facility is a process, it doesn't happen overnight, and unfortunately many people simply can't ever allow themselves to stop micromanaging.

Katie, I admire those like you who had the strength and courage to care for someone at home up to their final breath, when that was still part of my plan looking forward to her final days filled my with anxiety. I'm still anxious about losing her but I'm relieved to be sharing that burden with people who have been there many times before and knowing it is not all up to me alone.

Besides true mental illness there is not a disease that takes all that you have to keep going forward. I recently lost my Mom. This process took 10 years, I cared for her 7. Fact is, when you”re loved one stops eating, moving, you are getting close and yes, aspirating and pneumonia is common and also, what my Mom had. I am proud to have cared for my Mom in home from start to finish. Hospitals were a necessity only for her first UTI and her final pneumonia diagnosis when I brought my Mom home with hospice to die in the comfort and safety of her home. Hospitals are not equipped or have the man power to compassionately care for your Alzheimer’s parent or family member. Why is everyone looking for a respit when your parents are leaving you on every level. They are so scared and confused. How can you leave them in the care of strangers? I joined this site so late in her diagnosis, but there’s more whining then “What can I do?” Buck up people, it’s quite a ride. You want to return the love? Then use your love, honor and help your loved one in the only way you can...be there!!

Ive never heard of a hospital caring for Alzheimer patients...perhaps you meant nursing homes Janlin? Sorry you lost your mom and was someone who proudly cared for her in your own home.  Adult children place their loved ones in a care facility for a variety of reasons and none of those should be questioned by any of us here. My father is in a good LTC facility and is getting the care he needs by nurses and aides so I can be his daughter and overlook that care as well as all the other things I do for him that wally003 outlines in his response above. When the time comes I’ll involve hospice. And that is what I want to ask poetry21....do you have hospice for your mom? I agree that some lack of peace is due to our caring and our controlling natures. I think that is normal. Also for me, having been in the healthcare field for over 40 years, I probably have high expectations. You do have to decide what is worth worrying over and what is not. Anyone can "whine" here all they want, in my opinion.

Since pallative care is fairly new i havent had any experience but do you have any locally you can check into. It is not hospice. I think care is a level before hospice...but doesnt include rehab.

Poetry21, your post struck a chord with me because I had this "revelation" just this morning!

Situation: 84yo mother still lives at home, has Alz, sister and I visit her 4x a week, take her to eat/shop. She has germ phobias and dietary issues that make care by others more trouble than it's worth. A support group sister and I go to is telling us we need to get her into a place. We're wrestling with which level of care. Home aide? She won't let anyone in the house. Extremely security conscious. Memory care? How do you take a person who has lived in her house for 45 years almost as a shut-in except for an enabling sister who did EVERYTHING for Mom (another issue...) to a place where she knows no one and no thing? I woke up realizing if we placed her somewhere, we would be trading one set of problems for another - and paying dearly for it from her estate. It's her money - not ours and we are well aware of that - but what's left of her happiness would NOT improve by being elsewhere. We are convinced she would die of depression within a few months.

We'll still have bills to pay, visits to do, excursions to take, laundry to do, greeting cards to buy (guess my mother is not the only one with a "thing" for birthday cards!), phones that ring.

Without writing a book here, Mom is better where she is until the disease progresses to a point she is no longer aware of who we are. Safer, happier (though still miserable). Sister and I will have no peace until she is gone, unless and until we resign ourselves to this. I just emailed sister this morning that our best hope is for mom to succumb to something quick - heart attack or stroke. Do I feel like a dirtbag for thinking that? Yes, but it's the truth. Part of peace is accepting uncomfortable truths.

So I think for now sister and I have no choice but to take no action, and that is a conscious choice. Leave mom where she is until the next phase of this disease.

I wish us both moments of peace. We will not have continued peace until she is at rest. Until then, we just have to live with this horrid reality because running away isn't a good option. If it were, I'd be in Switzerland by now.

Good luck to you. To all of us.

For 2 years I did everything I could to keep my mom out of memory care. It was a promise I made to her to live a life without being stigmatized as a crazy person. When she was in independent living, then assisted living I worried about her constantly. I was always very anxious about her quality of care. Always anxious about her mental decline. I was always worried.
Then the day came when I knew in my heart she needed to be moved to memory care. She started showing up for dinner without her pants on and the other ladies in AL were making fun of her and bullying her like a pack of wolves.
Now that she is in a small memory care unit, has friends that better understand her and has the one-on-one care she needs my constant worry is gone.
I think the anxiety stems from not knowing if they have the care they need and if you are making the right decisions for them. You can only do the best you can and find peace in your heart.

Poetry, I feel for you. I also agree that it feels easier when you are in control in your own surroundings.

When my mom was in respite care for 5 days at the end of April, it was supposed to be relaxing for me (I was babysitting my 2-year-old granddaughter). It was anything but relaxing -- not because o my granddaughter, but because of  Mom. I heard things from my brothers and sister as to what was going on at the nursing home. I would call to make sure the staff were doing what the they were supposed to be doing (they weren't). On my way home on day 4, I had a meltdown. I could not stop crying. Recently, the hospice nurse suggested doing another 5-day respite to help me out. I said, No thank you.

Right now, I am sitting in Mom's room (by myself) while she sleeps in her hospital bed, thinking that the end is not too far away for us... As upset as that makes me, I have to keep telling myself that she is not the person she used to be...

Peace to you.

Janlin, Why respite? Because there comes a time, when the caregiver is so depressed and unable to care properly, he/she needs to get away ... to have some time to remember that there is life out there beyond the 24/7 caregiving experience, to refresh and renew, and then to be able to return to "giving everything they have" back into caregiving. It is NOT selfish.... and it is NOT right for someone else to judge the person who needs respite.

My mom's in AL and I think the level of care is right for her. Although for what we pay they could be more attentive. I work full time (no other choice) and am single, the only child and I think this is our only choice. I hope to move her to a better facility this year that is somewhat more expensive, but she has LTC insurance for the next 3 years so I am using it. Unfortunately there is a waiting list for the better place.
I still have no peace as I find myself constantly driving over there to deliver all the little things she wants, I am paying bills, faxing in bills to the insurance company, managing complicated finances that I am not used to. I never had that kind of money. I find myself waking up in the middle of the night thinking of annuities.
By the way mom was in a rehab nursing home prior to this when she was still living far away and she fell and broke her ankle. She told me they put restraints on her, but I don't know whether to believe her or not as she was quite out of it at the time from post-anethesia dementia.
I have got her in a decent place now, but there are still worries. Just because you put them in AL doesn't mean all the responsibilities are taken care of.  I also am tied to my phone in case they call.

I thought it would be so much easier on my mother if Grandma was in NH instead of home, but I was terribly wrong. My mother still spent all day with her but had the added stress of being away from home. Now it’s my turn. It was very hard at first when Mom went to AL. I wondered if I had made mistake. After time, she became more settled which of course made easier for me as well. Hope that’s true for you.

Sometimes nursing home care is better for the patient and maybe even yourself, but it isn't easier, just different. I was caregiver to both my mom and dad. Dad required nursing home care for 2 1/2 years while mom still lived at home. Now, that was a LOT for me to manage. Three weeks after we laid dad to rest, mom ended up in the hospital, then rehab, then nursing home. I felt totally overwhelmed by her rapid decline and wondered if she would do better at home, but that move wasn't possible. Ultimately, I was totally exhausted by the intensity of the last eight years of helping mom and dad and thankful for the team of professionals who joined me in caring for them at various stages of their decline.

poetry:
I called my mother every day (sometimes more than once a day) for 5 years.
Rounded up that was 1,900 phone calls and the phone calls were never easy because my late mother spoke over me every time.
She lived in another state.
We tried to get her a different living situation than living alone.
None of them worked.
I had to leave my state and move to her state in with her.
The end of her life when she suffered a stroke at 94 years of age.

Janlin, one other thing .... your words that no other disease besides mental illness takes everything you have to provide care..... absolutely not true! My husband passed away from cancer, melanoma, and let me tell you, it was extremely exhausting and difficult for him, for me, for each of our three young children, and for my parents , who were like another set of parents to him, and all of his 8 brothers and sisters who lived out of state.... all of us suffered, and I am positive that there are many, many others who feel the same about taking care of their loved ones at home. Mental illness must be horrible, but that does not mean that other illnesses are any less devastating.

STOP STRESSING YOURSELF - I know that is easy to say but stop second guessing yourself - what is the worst that could happen? ... YOUR FAMILY TRIES TO FIND THE RIGHT OUTFIT FOR MOM TO WEAR TO YOUR FUNERAL!!! -

There are 168 hours in a week - assuming 7 hours a night = 49 hours then there is 119 hours you are available which is over 70% of time - make a plan with the facility she is in about when to call between 11:00 pm & 7:00 am in order to cover emergencies & even have a separate ring tone for them -

Then get some well deserved rest once you have your ducks in order because when you do this then you will get some peace of mind knowing that you have done as much as humanly possible - nobody can do more & stop feeling that you should because that is counter productive & could lead your own health issues - good luck

Poetry,

If this continues to be an issue, please see a therapist and get on some anti-anxiety meds to help calm you down while you and the therapist talk things out about what is going on the inside.

Janlin, my views on the subject of home versus nursing care have evolved over the course of the time I have cared for my mom - in some way, shape, form since 2006. That's 12 years. Many personal sacrifices along the way. My point is, by the time people reach this site, they are probably well into caregiving, possibly on the verge of burning out, and faced with major going-forward decisions. Of course, being at home is always preferable to being in a facility or nursing home. But, sorry, one person cannot do it along for the long haul without going over the edge. That's why my view has evolved to setting boundaries early if possible on the amount of care you can physically, emotionally, and possibly financially give to keep the loved one in a home setting. Thanks to my efforts, my care, and her finances, my mom is still at home with me and an agency providing 24-hour care. That may have to change down the road. We all care and are just trying to do our best. There is no one "right" solution. I have learned not to judge but to support.

My mom is in AL and there is still no peace. We even have a caregiver. But if it is not me running around getting all her favorite snacks and special toothpaste or whatever, I am an awful daughter. We started to have an argument about the caregiver taking her to get her hearing aides last night and I just shut it down. I am trying to work full time and do this too. If I need help once in a while that shouldn't be an issue. And it is not like my mom does not like the caregiver, I am just selfish for having her once in a while. At least that is the way my mom makes me feel is "selfish". We are lucky to be able to afford the help.

gati, you are letting your mom make you feel selfish. That's her emotional blackmail switch that she put into your emotional wiriing as a child. Please set boundaries and see a therapist so that you have more strength to chose how you feel regaurdless of her emotional blackmail. It sounds to me that the F.O.G. is strong with this one! Fear, Obligation, and Guilt are the primary tools of emotional blackmail which is frankly child abuse.

There is a very good book to read about this subject. Emotional Blackmail: When the People in Your Life Use Fear, Obligation, and Guilt to Manipulate You
by Susan Forward

It seems Poetry has left the site. I hope she comes back and responds. I would still like to ask if she has checked to see if her mom qualifies for hospice.

Harpcat, no she is not in hospice, she is actually better in terms her physical abilities but the main problem is dementia decline . And this is my main problem, if I bring her home, I should quit my job and sit with her 24/7.... otherwise the situation will repeat itself in a week. She doesn't listen to any of my words....

Oh, Poetry! That does feel like a terrible choice doesn't it? The way I look at it is that if mthr were in her right mind, she'd say, "No, don't worry about me. I'll be fine (no matter where she is). Go out and live your life and have a good time! Look after the next generation so we all have a future. I'm glad to sit back and watch the next generation take over!" That's what I'd say anyway. :)

With dementia, the brain is broken and their thoughts are not logical. A memory care will help you out in that they are well trained on how to deal with broken brains and get them to do what needs to be done. They are your eyes and ears 24/7, and they allow you to enjoy your visits with her instead of worrying constantly.

Here's how I dealt with the facility stress: We - mom, workers, me - are all part of the same community, and they are simply assisting you in caring for mom. Of course you would pay friends for their time that they spent taking care of her, and the workers are simply friends you have not made yet. It will be ok with a great attitude from you and the right meds from the doc! Having a therapist help you will be great too. Finally, the book, Being Mortal from Atul Gawande is great for all these end of life issues.