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Dad is 95 and mom passed 13 years ago. I've been his caregiver for the last 10 years. Last year it all got to be too much for me. I'm the youngest of 3, disabled, and the only one helping Dad. So I set Dad up with in-home care, I thought it would give me a break. But, it only compounded the issue by having to oversee everything and of course Dad not being happy about it. It didn't take long for me to seek a different resolution: a very nice, and I mean upscale, assisted living facility. The first 24 hours resulted in an early morning call from the nurse, "Your father is refusing his medication." and for the last 6 weeks it's been one thing after another. I'm more exhausted, frustrated, and unable to cope now with all this help than when I was doing it all. He's started lying, being mean, not eating, not talking all his medications and I feel guilty. I don't want to hear that I did the right thing or any other vacant platitudes. I'm at my wits' end. He has literally sucked the joy out of my life.

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Everyone: Thanks for your comments today. Interesting that you all have found similar methods of coping with these various issues. It actually is a relief to know that it is apparently only one person from each family that takes the lead while everyone else sits back and watches from their vacations or retirement. I guess we are the strong ones. That kinda makes me laugh because I'm crying as I say that. I guess I can't fix it overnight or in a few weeks. It feels mean to have to treat dad this way. I've told him that if he wants to be miserable then he'll probably be miserable. But if he wants to make the best of it he can meet people and do activities and most likely enjoy himself a bit. My husband says guilt is a useless emotion and I should get rid of it. I've got to concentrate on my health... just not use to making myself a priority.
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Rainmom:
Ah yes, the versions of "help" from the self-serving.
They grin and beam like they've earned a gold star for doing something they should be doing in the first place. While at the same time creating more work and grief for the caregiver.

Sigh...shakes head.
"Just keep swimming, just keep swimming. .."
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Mojorox- I use to have a saying very similar to yours - "If you don't help, you don't get to criticize". Unfortunately, my brother who visited our parents for an hour twice a month- as long as it didn't interfere with a vacation or time he spent in his "cabin" - think Street of Dreams - in the woods - unfortunately for me, he considered this helping.
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No sleep. No joy. No break. No help.
Frustration. Anger. Sadness. Anxiety.
I feel completely alone screaming inside my head all day long. And I'm tired, so f'n tired....
I'm becoming someone I'm not and don't want to be.

I realized one day, sitting in a zombie like state, that I could control some of the burden by simply not accepting it. The guilt I had was placed there by me and I could remove it as well.
I do the best I can with love and sympathies but it is what it is. I guess in short, I grew a thicker skin and use a more of a tough love approach. Nothing harsh, always with love but, sorry, I can't do that/change that/deal with that/live like that etc. I no longer cater, bend over backwards, or have people walk all over me. I've put my foot down with family who don't help or people who snark and complain. They will have something bad to say no matter what I do so why am I killing myself? And if someone is not or cannot help, they are not allowed to comment on my choices or decisions. Period.
I've asked family members to please leave my home for doing just that. Feel free to return when you are willing to participate.
I try to solve moms temper tantrum's with hugs but insults will make me leave the room usually singing the Rolling Stones' you can't always get what you want ...but sometimes you get what you need...

I'm human.I know in my heart that I'm doing Allright, not perfect, but I do care and I show it. I work hard and do whatever I am able. That's enough. I no longer carry guilt (although in my case I think I mixed guilt with worry about what others thought)....
I cannot change others only myself. It has helped a lot, and has earned me respect from others where there was none before.
At the end of the day, I lay my head on my pillow, knowing I'm a good person and I've done the right thing. It's day by day but I am regaining some control of my own life and feel I am slowly returning to normal.
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Forgot to mention...in the process of the roller coaster ride and fighting with my sister I got the Shingles. I was only 54!!! You do not want the Shingles...
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Jelly,
"How do you not loose yourself"? IMO and in my case it was next to impossible and sometimes impossible. I too have a husband that can't hear all the "bad stuff". In the depths of any given crisis he would suggest "let's go to Las Vegas "or something similar. It would drive me nuts!!! The energy it would take to get myself ready for a trip then come home MORE tired?!? But, the times when I was too tired to fight him and got away it did help. I was the "fixer". I thought I had to over see everything. I had to help everybody. Unfortunately, we can't fix everything. Somethings are destined not to be fixed. Some of us think if I just fight harder, try harder, make them happy, we as the "fixers" won't fail. I think that's where we loose ourselves.

A Geriatric Psychiatrist helped my Mom greatly. Hospice helped me deal with my Step Dad and Grand Mothers situations. Everything else I was trying to do was basically spinning my wheels.

7 yrs in the trenches and I am now trying to find myself. Trying to not feel so tired. Forcing myself to try to eat better and sleep on a regular schedule. Trying to finish one task before I start another. And guess who wants to go to Las Vegas?!?

Sorry, I ramble. Its IMPOSSIBLE to not loose yourself if you are trying to do too much and hitting brick walls at every turn. STOP! Take a couple days off. Line up some professionals to deal with your Dad. And the saddest one is to try to accept the situation with your Dad as it is. He may not want to be fixed.
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Jellybean - i mentioned that my dad was very angry about being in the nursing home so of course he felt better taking it out on my stepmom or me when we visited.

This is what we did - if he started in (phone or in person) we would say "I'm sorry you feel that way" and then hang up or leave. He stopped getting to us because we wouldn't let him.

Eventually he started being pleasant. Try this approach.
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Rainmom, thank you! I'm going to check into this. Something must change before I lose myself. You are a very strong woman. I hope I can hold it together the way you did. I'm glad you had that year to repair and enjoy each other. I want that so badly.
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* rushing not flushing!
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Rainmom I am so glad you didn't just go away with my first bitchy comment. Thanks for that. In the last two weeks I've been letting calls from dad and AL go to voicemail. I feel a little mean doing it, guilty. Of course dad tends to keep calling till I answer. I'm sure I'll get passed that feeling.

And isn't it fun to have critics! Siblings who cannot be bothered to help but can find fault with everything you do. As you well know, there are so many other issues than just the parent and their actions. The hard decisions, like taking the car away, finding out he has had insurance for LTC but never mentioned it for fear someone would take action. We were literally interviewing contractors to update our home with an ADA approved suite for dad. Lowest bid out of 7 was 50k! And of course I thought it fair for dad to pay at least half since his first year in AL would run about 50k. But apparently I was trying to "remodel" my home and have dad foot the bill. Oh yes please, let's eliminate the garage and put in ADA everything! I'm sure that will be a lovely selling feature... To less than 1%. Siblings!!!! But then the lying started. I was being judged by friends and family and they all have no problem coming to me directly and voicing their opinion or shaming me. None of whom are willing to do anything to help. Dad started telling lies even to my children so I was getting grief from my oldest because dad told him I wanted 80k for him to to have a new toilet! Fortunately after a few months my son finally realize he was being played. That's when I halted the planning on the addition and found dad had a LTC policy. So I decide to go visit my eldest and all of my g-kids at Christmas. Just days before we leave, dad takes some anti-dizziness medication while I'm out preparing for our trip but his caregiver was with him. He either took took much or something. So with just days before we leave, I'm flushing to after hour doctors and planning with a company to come out and test oxygen levels while he sleeps. Hoping they get results and oxygen delivered before we leave. No, dad I'm not changing my plans. Well you know how conniving they can be. After 7 hrs of travel I have a VM message from the in home caregiver... And that's when I started breaking out in hives or what ever it is. He apparently had an extra set of keys, drove to get a Christmas gift and had a wreck. The caregiver was with him but he still denies it. So many things they do to make our lives difficult. And now I know he's told people he's doing it intentionally!

Anyway... Someone said you had psychiatric help for your mom. Did that help?
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And yes, Barb is right. Notice I said earlier I had been doing this six years - and then I said I looked at myself over the past five years...

So the missing year? It was this last year - the final year. Someone - most likely Barb - suggested getting my mom to a geriatric psychiatrist. Then when I was seeing my own doctor - for a little anti anxiety medication FOR ME, he said his wife was dealing with the same thing and getting his father-in-law to a geriatric psychiatrist was the best thing they ever did.

So I got my mom an appointment- a month to wait. I told my mom a "therapeutic fib" - that it was an appointment to see if a "new memory medication" would be right for her. My mom openingly admitted her memory was going - plus she had always been a bit of a hypochondriac- so any reason to go to a doctor worked for her.

The psychiatrist talked to mom, did some tests. Then he talked to me and told me his plan - a complete medication overhaul.

It took about a month since old meds had to be stopped gradually and the same for starting the new meds. But after that month my mother was so much better - more her old self than she had been in years - and in no way was mom a medicated zombie- for the first time in the eight weeks she had been in the nursing home, she was spending time out of her room and was actually taking part in activities.

So together with my new boundaries and moms new meds, we reached the point - jellybean, that you said you longed for with your dad. We were finally able to spend time together as mother and daughter- without arguments and drama.

I will always be grateful for this time as I had been so angry at my mom for so long. Angry, worn out to the bone and sad. The tragic part is that a couple of months after this blessed calm, the dementia tightened its grip on my mom and she was loosing the ability to talk and to eat - she began sleeping more and more. Hospice was called and six months later mom passed. But even though it was only for a short time - having this period of peace at the end has made a difference in my moving on.

I won't be a hypocrite or lie and say I'm not still angry at her - at the whole frickin' situation- but I do think that in time I'll be able to heal and get past it. Something I doubt I'd be able to do if I had not finally set my boundaries nor taken my mom to the geriatric psychiatrist.

 Jellybean- if you can get your dad to go - lying if that's what it takes - it could make all the difference in the world.
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Rainmom, I seem to recall that getting your mom seen by a geriatric psychiatrist helped too yes?
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I was just getting ready to come back and recognize your other question - and actually the hair question was so much easier.

But you mentioned crying - so maybe that's a good place to start on how I managed.

It wasn't the crying that made me search and find this sight. It was why my mother couldn't change her Depends without covering herself and the bathroom in poo. So things had become pretty bad.

Without even realizing it was happening - in the time it took me to get out of bed in the morning, then walk to the kitchen to pour my coffee - I would have tears running down my face. Nothing had happened. The only thought in my head was "must have caffeine". Yet there they were - the tears every frickin' morning. I knew I was in serious trouble.

Things had just become so unbearable - it never let up and I had to take care of and/or fix EVERYTHING. Making the tough decisions- no more car, IL to AL, AL to NH etc and mom mad as h*ll - calling me, screaming at me, blaming me, accusing me. And me, all the while killing myself for her, putting my own family second - never mind my needs - trying as hard as I could to make things acceptable to her. I counted once - 47 straight days - days that my phone rang and it was either her or about her. And I'm not talking easy, pleasant chats. The doctor, the pharmacy, the insurance co, the nh, oh joy - my brother with a critique, on and on.

So - I came here and blubbered my way through my first post. And this is what I learned that saved me. I learned to say "no". As cold as it sounds, I had to detatch. It really had come down to "it's either me or her". I learned boundaries- sorry, cliche I know. But, no more running every time she called. If mom got mean while I visited, I pleasantly said "see you on..." and I left. Mom got her own ring tone and so did the nursing home.

Its hard to let go, I do know that. But here's the thought that put me over the top. - I had been putting off a surgery I needed for over three years in order to look after my mother. I no longer could avoid it. So in thinking about a four hour operation I considered things going wrong - and it struck me - if I died, would I be happy with the final five years of my life? The way I treated my husband? The attention I gave my son? Would I be happy with the person I had become?

Like I said - it came down to her or me. And when "me" includes my own family - there really was no other choice.
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Ha! Rainmom... Well you know what it's like trying to cover it up those bare spots! And thanks for the info. But I did ask, how did you keep from losing yourself? Didn't it just seem like you were running on auto-pilot with only stopping to cry in the shower or while trying to sleep? Then doing it all over again like a robot? Then when you least expect it you find that you're screaming at a complete stranger that just p!ssed you off for some reason? It's like I'm walking atop a wall, things aren't good but not horrible either. Then one little thing happens and I've fallen off the wall and it could take days to get back up. Not depressed... mad, just angry, bitter
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Lol! Jellybean- you open up with all those heart wrenching feelings - and then ask me one question - about hair! You're my type of gal!

The hair thing was a big deal to me. I always had good hair and a lot of my identity has always been wrapped up with it - I realize that sounds shallow - but it is what it is.

First I learned about sebum which is basically a buildup on the scalp of cells, dirt and hair products. It will keep new hair from growing by not allowing oxygen in. I use a lot of product, so I found a shampoo designed to address that. Neutrogena makes one called Anti Residue.

Next came the vitamins. I already took the basics - Omegas, E, CoQ -10, Alpha Lipoic Acid and stuff for liver, kidney and brain health. I'm not sure if all that's required as a base but I doubt it since my hair was falling out. So - a bit of research lead me to two supplements- I won't bore you with the details - you can google them when you need a mental vacation- MSM and L-Carnitine. Adding these two I started noticing less falling out and some grow back. But it was slow, so more research had me adding Iron. I am mena-stopped and eat red meat so I was not a low iron candidate but I still added it. After a month or so I had no more problem and haven't since. And this was in the middle of my time with my mom so there was still plenty of stress.

Hair grows in three stages. Grow, rest, shed. The aim is to stimulate growth and lengthen rest. Shedding will occur and there isn't a whole lot than will stop it.
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cdnreader: I've wondered the same thing. Is he just done? He's never been a quitter. The confusing part of that theory is why, when he doesn't want to take his meds and then starts feeling bad, why does he ask me to take him to the doctor? Just to hear her say the same thing I've said? Take you meds and you'll breath better and walk further. I'm trying to understand but I don't. AND I don't want him to just give up. That's too hard to deal with.
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Rainmom... You're right, lots in common. There was about a 6 month overlap where I still had my youngest son at home just before he got married and I began taking care of dad. I was in my mid 40's and never experienced being spontaneous, down time or freedom. I never really thought about what I was missing until my husband had a stroke. It finally dawned on me that I'm 56 and I've always been taking care of someone.

It's so difficult when you try to do everything you can to make your parent happy and comfortable and they fight you on everything. My husband has been telling me for years, try to imagine being 90, 91, 92 and on as the years roll by and I empathize as much as I can. Dad has always been a pretty happy and likeable guy... until recently. I'm really having a hard time determining what are real issues and stuff he is just complaining about. The real stuff has to be dealt with. So how did you not lose yourself? My friends don't count on me being available anymore. My husband (who had a stroke 18 mos ago and a personality change) doesn't want to listen when I need to vent. (He used to be my shelter from the storm.) My siblings are too busy living their lives. Dads friends say one thing to my face and something quite different behind my back. (and they're younger than dad, in their mid 70's) I feel like I'm getting beat up from all sides. No matter how good of a person I try to be and the effort I put into being a good and honest person, there's always somebody to smack you around and make you feel like crap. These are things that use to not phase me at all. Just a the end of my rope. I feel very alone. Not making anyone happy including myself. I question why I try so hard or sometimes wonder why I care so much when it's all an exercise in futility.

How did you get your hair to stop falling out or grow back?
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Jellybean- for you and I not getting off to a good start it's amazing how much we have in common.

My dad was diagnosed with CHF in his late 70's and did really well for a while. But when it began to slow him down - dad was really active - and he needed to start medication and adjust his eating and his lifestyle, he couldn't accept it. So because the Lasix was interfering with his activities - having to pee all the time - he began playing loosey-goosey with his pills. This lead to him not sleeping since he timed the pills so he peed at night. Eventually, things compounded and another medical issue came into play - boom - five weeks in rehab and he was never the same.

Funny thing is - in the long run it wasn't my dad that drove me to the edge of complete mental and physical collapse- it was my mother.

My parents moved to Independent Living at this time. As luck would have it, my mom had a medical crisis at the exact same time. Dad had a hired full time caregiver but my mom fully recovered - except for a pesky little oxycodone abuse problem she had developed.

All of a sudden I was in charge of their lives in addition to having my own which includes an adult son with a sevear disability living at home.

Daddy was easy and we were very close. Although we did have several trips to the ER to get his lungs drained and a couple overnights in the hospital- largely due to daddy not eating right - trips to McD's for French fries - curtesy of my mother. Unfortunately he passed away about 18 months later. My mother on the other hand was a nightmare that just got worse and worse. She fought me every step of the way - actually went out of her way to be difficult, pick fights and in general - made my life h*ll. And that was before the dementia kicked in. Once that was in effect I was in for a real joy ride.

I know all about the rashes and hair loss. I had what I refer to as the "mystery rash". After months of seeing dermatologist and assorted tests and biopsys they said "stress induced eczema". Great. The hair loss I was able to fix with some research and my own vitamin/supplement cocktail. But I went several months with a bright shiny patch of scalp showing where my bangs use to be. Talk about kicking you when you're down!

Anyhoo - I get it. I really do. But Im just a no bs, to the point, straight shooter. Which I know isn't everyone cup of tea. But if I can help you with specific suggestions - let me know.
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Dear Jellybean,

I'm so sorry to hear what you are going through. Its not easy that's for sure. So many of us can relate to what you are saying and feeling. Its only normal to feel this way after 10 years of caregiving. The years have gotten away from us. Its a rollercoaster as our parents get into their 80s and 90s. I don't think any of us know what are doing till we are in the trenches every day. I didn't.

For myself when I was getting so frustrated and burnt out with my dad, I only wished I had considered taking to a counselor or therapist sooner. Or tried to access more community supports.

From what you are saying maybe at 95 your dad has had enough. Maybe he is saying he wants comfort care. Its his choice. You've done more than any of his children. I know you love him and tried your best every day for him. I know its hard to see your dad at this stage in life. Thinking of you.
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Rainmom thanks for your explanation.

I've had dad tested SLUMS and he has been to his PCP twice since entering AL. He has a slight impairment with memory but nothing that needs addressing at this time. He has congestive heart failure for 6yrs and he's refusing to take the medication to reduce the fluid in his lungs which causes his heart to work much harder and it's not in good shape. He has chronic kidney disease which limits some meds he can take also. Dr. told him he going to end up in the hospital if he doesn't take his water pills. He's not eating much and is losing weight. The nursing staff is working with me and Dr's on the meds. He just had an eval with AL and placement seems sufficient. I spend most of my time with "dad" issues. He's not trying to acclimate and he says he doesn't care. He says he doesn't see light at the end of the tunnel and he won't make it another 60 days in there. And I did this to him. I'm not sleeping, forgetting to pay my own bills, neglecting myself and husband, losing hair, breaking out in hives, snapping at everyone, including dad! I tell myself this time just don't be bothered by what he says... but then there it all goes again and I'm mad and he's delighted that he got to me again. He's told his friends at church that he's trying to make my life difficult. I've given myself a break from him so he can make friends and do the activities that he likes. But he will not. He just sits in his room. Im losing myself "in all things dad". I'm trying to take care of myself but I think I'm just going in circles getting very little accomplished except dad's stuff. Sad thing is, I know there will come a day when he won't be here but I can't seem to create a situation where we can just enjoy each other.

Sent from my iPhone
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Please stay here jellybean!

My "stress" has lightened up in just the few months I've been
here.
People always say that raising kids is the hardest job ever...not true for me...aging parents are in my case...but the experienced people here calm my heart and give me better clarity! 
 And no matter what time of day it is there's always someone here with a shoulder to cry on or just someone to listen.

thinking of you, Bella
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Jelly; has dad been evaluated by a geriatric psychiatrist? If he's got dementia, especially if it's vascular dementia, depression, anxiety and agitation often result. The right combination of meds can make all the difference in the world.

I'm assuming that dad was assessed before going to AL, and that they told you they could handle his needs. In the nicest possible way, tell them that they need to do that: handle his needs.

If he's refusing meds and you are his healthcare proxy, you need to discuss with the Director of Nursing how they are going to handle non-compliance. Toss the ball back into their court; what is THEIR plan?
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I'm very new to this site. I feel like I'm being driven over the edge by taking care of my mom. Just know you are not alone.
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Sorry, jellybean- it seems you are looking for a specific type of response based on you final paragraph and then your reply to 97yroldmom.

No trolling involved just honestly trying to get to the point of what type of answer/advice you're looking for.

I went through six years of what you're now dealing with. I am not the enemy.
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Jellybean - please stay on this site. There are so many good people and good advice. If you look at different topics on this board - many people ask the questions about how to handle ALF.

Typically a parent needs a longer settling in period - usually several weeks. It is often recommended that the caregiver give some space - not visit as often or for very long periods to give the staff and the patient time to adjust to each other and settle in to their routine. Most patients end up adjusting well and making friends and participating in the activities.

Also - the ALF should be able to handle the medications issue. Ask them to handle and only call you for true emergencies - like a hospitalization. Otherwise you will indeed get sucked dry.

You mentioned that you do not want to hear that you did the right thing. I'm going to have to upset you and tell you that you did. You are a loving daughter who recognized that DAD NEEDED A DIFFERENT LEVEL OF CARE and you provided that for him. Yes, Dad is angry - he can't help aging and all that goes with it. But your role is to see that he is helped, taken care of to the best level possible. It no longer could be you hands on. You can only control what you DO, not how your dad FEELS.

Breathe deep - explore some of the other threads on this board and i think you will find good suggestions and encouragement. You are important too - how you are feeling physically, emotionally, etc. It is time to re-balance and take care of yourself too, so that you can advocate for your dad as needed.

My dad spent the past six months angry as h*ll that he is in the nursing home. He blamed everyone - but the fall that put him there. Yesterday he told my step mom that he understood that he needed more hands on care and that they took very good care of him at his nursing home, and that the staff was kind in spite of all of his rudeness. It takes time. Bless you!
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Jelly, you haven't given us much insight to your Dad or his needs. In addition to being 95 what are his issues? Does he have dementia?
Can you meet with a therapist to guide you on this path of decisions?
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You say that your dad was NOT happy with the people you hired to care for him in the home. And he's not happy being in the ALF. I'd examine what is going on with him, because, if he's not happy, it could be due to something medical. I'd have him evaluated for infections, UTI, depression, dementia, etc. If he has cognitive decline, that might explain his resistance to care, being mean, refusing meds, etc. Those things are not uncommon for people who have dementia.

I'd also discuss his behavior with the facility head. See if he needs more time to adjust or if he needs a higher level of care. My LO progressed to need a higher level of care, soon after she entered a regular AL. She was resistant, confused, and unable to do what the staff required of her. Once, she moved to Memory Care, it was totally different. That was the right level of care and all of the phone calls about problems disappeared.

I would think that the AL can discuss a plan to make his stay there happier or they can recommend another type of facility.
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So Sorry rainmom. I didn't intend to like your response. A trollish response at best.

to 97yroldmom: really not looking for another point of veiw from my dad's position. If your username is accurate, you must be mad at someone trying their best to help you too.

This was posted under CAREGIVER BURNOUT!! I'll give this forum 1 more day. Really thought I would hear from
 someone with a similar experience would have some insight before dad runs me off too!
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He's probably not too pleased with you either. How are you handling the calls? What does the AL recommend? You have to give him more time. He's lived a certain way a long time. Perhaps you should hire a sitter to spend time with him and help him get acclimated? Did you have a helper at home that he is already accustomed to? Perhaps that person would come in a few hours a day? Ask the AL if they have a list of sitters they work with.
Take a breath. This is hard for both of you. If you wind up taking him home hire plenty of help so you can escape more often. This is a very hard situation.
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What would you like to hear?
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