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My Mother has been in a conv. home since sept. She has alzheimers. She lived with me for 9 years. I really have to force myself to go see her and do not go very often at all. I am the only child and took care of her myslef while working until I finally got some help. Which seemed to take forever. It wasn't until she set my patio on fire that her doctor realized the extent of her disease since she always seemed fine at her visits. Its like I have a panic attack before I go to see her and it takes all I have to go there. Everytime she "never" remembers when I was there. I call her often but she does not ever remember the calls. Of course, I feel guilty not going. Actually haven't been there since Jan. But I find myself becoming physcially ill at the thought of going to see. My home is now peacful. I do have a 19 yr old daughter, but unfortunately she refuses to go see her. Only on the holidays. Does anyone else have this problem?

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When I first saw this thread posting around, I was frankly a bit haughty and critical, thinking how can you dread being there for your LO? I have come around pretty quick. As my dads bad days seem more frequent, I dread driving over there wondering how he will be that day. Will he looked tortured on that day? Or will it be one of the up days I can feel good about. Or my worst fear, will it be the last day I see my dad alive, so then I dread leaving thinking what if he dies after I leave. So yes, I have come to experience this dread and fear of visiting my dad.
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Yes, I have the same problem. My mother is in a nursing home and has been there for two years. I visit her every Sunday for a couple of hours, but have to force myself into going. I feel physically ill every Sunday morning and would rather do anything than go. What keeps me going is the Bible commandment, "Honor thy Father and thy Mother". I pray for strength before I go and somehow I always get through it.
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First of all you can't be guilty for your daughter--that is her problem if it is one. You don't know what happened between them. My son never visited my father after he became ill. His explanation was that he wanted to remember the good times. And, they were buddies. My father was very hurt but I stayed out of it. My son does not have much to do with me either and I've never been his hero. I did not like to visit my mother because she never wanted a relationship with me and worked hard to make me feel guilty. So, I would visit and drive away in tears. I worked on this in therapy and continued to do my obligatory visit until one day I found myself not crying when I left. She died soon after. I miss my father and he could be a pain but I knew he loved me. It takes two to make a relationship and both need to want it. At this point she doesn't know what she wants. You gave her 9 years and that is a lot. Go by and be as loving as you can. It won't change anything for her. Do try to speak warmly to the care takers which may, indeed, improve her care. Guilt is one of the useless emotions
because it does not often improve anything. But this could improve things with your daughter if there are problems there. I can honestly say, I understand your pain and hope you can find a way to leave it behind. Wouldn't it be great if all families were all like "Little Women" but they aren't.
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Caregiving the elderly has two faces: Responsibility, and Dread. We know you are responsible, or you wouldn't be the caregiver! But the dread is just part of it, too. My advice, after having been the caregiver for both my parents and my Mother in Law, is to be less harsh on yourself. If your parent in a facility is being unreasonable, walk away during that visit. Make some boundaries for yourself, and strictly adhere to them. Nobody deserves the guilt-driven parent who literally eeks years off your own life. If they are verbally or physically abusive, run, don't walk away that day. Come back a week later when they have had time to consider their treatment of you.. If they live with you, move them out. You are in charge. They have earned respect, but you are not their doormat. There are limits which need to be respected. If. not, you are only fooling yourself!
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Some posters here lack compassion often times because they are overstressed from their own caregiving situation. It is called compassion fatigue.
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I would go, oh, once a week. My mother didn't really even know where she was, and her speech was kind of garbled. I mean, she knew who I was and could speak clearly, but couldn't answer questions. "So what did you have for lunch today, Mom?" and she would start talking about her sister who was driving to Peoria for a church thing. She always seemed happy, though. I would check out her room to make sure her clothes and spare shoes were there, no one took her tv or stuffed animals. I would bring a magazine, like a nature magazine, cat magazine, or fashion magazine and we would look at the pictures together. I would stay half an hour or so, and then say "I will see you soon" and nip out. Walk to my car free free free as a bird! I did my duty, and I did go faithfully once a week, for a half hour....Sometimes I would stop at the Dollar Tree and buy a dozen little stuffed fuzzy animals, little bears and dogs and such, bring them and pass them out to her table mates in the day room. Mom loved her stuffed animals and thought they were real, try to feed them and would talk to them. They unfortunately always disappeared, so I would replenish with a cheapie little stuffed critter from the dollar store. People there loved to hold and stroke them, it gave them comfort, I think.
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The only portents of our future are in the faces of our parents. Remember that one day this will most likely be you, and how do you want your children to treat you--because they are watching. If you have no close younger family members, look at what happens to them and get some good LTC insurance!
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This is such an old question i am sure the OP has resolved her issues by now. In general I would say if you can't bear to visit don't especially if the person does not know whether you visit or not or even do not recognise you. If you feel you must go ask your Dr for something for your anxiety before you go. Your only responsibility is to make sure she is in a safe place and well looked after.
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Bless you, dear. It is completely normal to have all of these feelings. It does not mean you are not strong. It is simply a loving heart reacting to the tragedy of this disease. Do what you can. Don’t do what you can’t do. Make sure Mom has her hair and nails done. Fresh flowers. Cookies. Comfortable socks and shoes that are secure to walk n and don’t slip off. Sanitary toothbrush and hairbrush. Pretty blanket on the bed. Keep in touch with the staff. When you do visit, keep it short. 5 or 10 minutes. Bring someone with you. You can oversee her care without necessarily being there. Remember, each day we have is a gift. Use it wisely.
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The fact that you recognize how bad it is, says you did all that you could do! Instead of berating yourself, take a week or a month off. After all, you've earned a respit. As for long term, just know that aging family members often become worse than before! I finally gave myself permission to not like my Mother in Law, and to know she was NOT a good person, before or after Alzheimers took over. She was just a mean woman. I respected her, and tried to honor her during her lifetime. At age 94 she died a couple weeks ago. I didn't cry one tear, and was not sad to see her finally stop lying, calling me names, slapping me, and spitting on me. I am free. And I will not feel guilty. I did all that I could do. I was thougtful, in 40 years of adversity, and I never responded in kind, nor did I return her anger , insults, or physical abuse she hurled at me towards the end of her life. I am free.
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I don't have answers. I am in the beginning of all this stuff. I was 12 years old when I first got 'shipped off' to a friend's house to live bc my mother married a pedo. & he wouldnt leave me alone. That was 40 yrs ago & the pedo. died 2 yrs ago & I was hoping she would be fine now. What a joke. She took the occasion to go bat-s--t crazy & has dementia & Alz. now. I was trying to help since I am her only child, but she has turned everything around & blames this all on me. She was driving, right up to this latest health care issue of not being able to breathe due to congestive heart failure. So now I have the choice of putting her in any nursing home of choice, as long as they cost $1700./month or less!!! Every facility I've been to is bare minimum - $3800./month or higher!! Yesterday's visit was a $10,000./month facility!!! Yay!!! This is so much fun! At least I know I'm not alone in this. I will pray for each one of you! For peace of mind. Contentment. And helping you' s to see that whatever decision you made for your parents are the best choices for YOU & them.
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Yes, the thought of going to a cursing home to see anyone is extremely difficult..the first time I went I cried ...and swore that my mom would never end up in one of those places.........but on the flip side if you can no longer care for them at home..and can not get adequate care for them..that may be your only choice....it's a double edge sword...because it's the most difficult thing you will ever have to do...because you are saying goodbye to the person you once knew who no longer wants you or remembers who you are. It's a sad situation and there are no winners.
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Extreme mental illness and raising a normal child are two very different relationships. They can not be compared. Any mentally ill family members can bring you down into great despair and guilt. It is your duty to protect yourself from this self-imposed helplessness. Try to check in on your loved one as much as you can. If you can not, give yourself a pass. My mother is in her own world of dementia and not suffering. Everyone else around her that loves her is. I just make sure at this point, since she does not know me, that she is comfortable.
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Extreme mental illness and raising a normal child are two very different relationships. They can not be compared. Any mentally ill family members can bring you down into great despair and guilt. It is your duty to protect yourself from this self-imposed helplessness. Try to check in on your loved one as much as you can. If you can not, give yourself a pass. My mother is in her own world of dementia and not suffering. Everyone else around her that loves her is. I just make sure at this point, since she does not know me, that she is comfortable.
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Right now both my parents are in a nursing home. I too, get sick to my stomach every day going there. For me its knowing that they are getting worse each and every day and will never improve to the quality of life they once had. I gag walking in the place every day. I am so afraid of what I am going to see or hear about them , knowing that it will be negative. what gets me thru it is I keep telling myself they are my parents, I love them dearly, they brought me into this world and loved me every day of it. now it is my turn to give them that special love they always had for me. To see a smile on their faces when I come into their room makes me forget all about how I feel cause to me its all about making them happy till god calls their name....
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My mom is undergoing end-stage Alzheimer's and I have to do everything for her including manage her bowels. If she does not go after a few days I get very anxious because she can easily become impacted. It sounds sad but the center of my life is her bowels and keeping her clean and it's a struggle just to get her to brush her teeth. I think you made a very wise choice getting her in a nursing home because life is quite miserable for me. I have to watch her deteriorate more and more and there is nothing I can do about it. It is very depressing. Since she requires 24/7 care I sacrificed my entire life for her including job. Everyday I wonder if she's going to fall (I had to buy a hoyer lift) or catch pneumonia from a cold (very prone). So consider yourself lucky she is in a nursing home. You can't change the course of Alzheimer's. You forged your own life. Live it. I'm so close to my mom I could not put her in a nursing home but you can see the sacrifice this has done--I sacrificed myself for her entirely. The saddest thing after years of this I've grown so attached to my mom when she dies I will not be able to cope and may even succumb from the stress of it. So think about all of these things and take it with all seriousness.  Cargiving is a living hell and you get NO HELP from the government.  Nobody.  PS: I have two brothers. They are of no use. And I'm sure all they will care about is fighting over the estate while they live their merry lives while I am her sole caregiver: They have no concept what I go through everyday and think all of this care is free but at enormous cost to my life, finances and adversely affects even my retirement (I won't be able to).
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I feel unsettled every time I go see my husband that has Alzheimer's. Once I get there it is okay, it's just my going there that makes me nervous. Most times our visits are okay, most of the time he does not know I am his wife but he knows I'm his person that is there for him. Once I leave I feel better. It disturbs me more not to go than to go.
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well I'm not sure that the nursing home is the problem. My brother and I recently confided that we both have anxiety going to visit my Dad at home and depression when leaving. I think its seeing the deterioration of their condition really. Our dad has taken to living in pajama bottoms and peeing in buckets. He tried to hide his dementia from us but the last two months have been a downward spiral. we now have in home care 3 days a week but I can see that is going to have to increase. I feel so much better knowing he is getting additional help but the stress of going to see him is still rough. Watching the ones you love slip away is heart breaking, and it doesn't matter if your seeing it at a nursing home or at the home you grew up in. anyway ,, that's my 2 cents
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DailySuffering...I know exactly where you're coming from...she sounds just like my demanding, unappreciative mother...If I say anything to her she tries pushing my guilt button by saying I won't always b around...I tell her I won't either and the way things r going she'll probably outlive me!!'
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When you sacrifice decades of your life doing and giving to parents who are capable but selfishly enmesh their life with yours, there comes a point when you realize your own life has passed you by. Then your parent(s) age, continue to be self centered and continue to make your life miserable, which effects your spouse, your grown childten, not to mention killing off all your own hope's and dreams for your own life. So, why do we feel guilty about anything at this point? Because this unwarranted guilt is from a lifetime of giving and caretaking, making us feel we have to dutifully suffer till we escorts them to their grave. Just because this person is our parent does not mean we have to spend our adult lives dedicated to them. A truly unselfish parent would release you with love. We were born through them but we dont owe our life's to them. Yes, they did provide and care for us when we were children. They are obligated to that by law. I get soo irratated when people say to my mother.. "you took care of her when she was little, now it's her turn to take care of you" Let's examine that statement. First of all, it's ignorant for someone to make that statement. In my case, my mother makes herself out to be so angelic when she tells everyone, "Ohh, I feel badly she takes care of me." Thats a flat out lie. She says that to elicit some kind of compliment to her, telling her she deserves it. Her sense of entitlement has me running ragged and has her lifting her feet as she sits in her bedroom chair while I'm vacuuming and cleaning her room.
With emotionally abusing, self-entitled guilt producing parents, we have very minimal obligations to them, eg: safety, food etc. Those of us with these types of parents will most likely take the severly damaging repercussions of our parents selfishness to our own graves... and here I am, with my miserable, unappreciative, self entitled narcissist mother living with me and complaining how she hates it, tho every need and desire of hers is met. My grown childen don't come to my home as her only interest in them is how they make her feel... my husband endures my daily complaining about her. If she thinks we're both out, like when my husband is walking the dogs and I'm in the back yard and she didnt see me... she gets all pissed off that we left her alone. Why? Because her driving privileges were take by her doctor and she''s angry staying home. Everywhere I've taken her for social activites she refuses cause at 87 she doesnt want to be with "those old people".
Tell me exactly why I "should" feel guilty if I am caring less about her and more about my emotional preservation, my children and my marriage? For those of you in my shoes... think about your life of unwarranted guilt. Our parent(s) instilled the "guilt button" in us and we push it ourselves. My kids hate my suffering, They tell me, "Enough with the BS guilt. Go live your life, mom!"
That's my message to those of you who relate. God bless you and me with the couage to take care of OUR needs and start living!
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When my dad first went in the nursing home..I would start walking to the door and I would have dry heaves..even after a xanax...and I would leave crying..this went on for the 1st month until I got used to going to c him which I did every day but Sundays...he was jolly and would ask about going home and where my mother was (I made up excuses for the many times she didn't visit) I always told him when he got to where he could walk again he would go home..they had to use a lift on him he thought he could walk up until he passed..not a day goes by I don't think about or miss him...now have my mother living with me complete opposite of my Daddy...a story for another time 😠
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Please, please listen to me. These people are not who they once were so you should NOT feel guilt about not wanting to see them. They lived their lives and now it is time you live YOUR life. Think of YOU first and if it upsets you so badly, then just make phone calls but do not go if it is going to upset you and destroy you. You need to take care of yourself.
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This stuff is so hard. My mother, the primary caregiver, was always very mean and difficult (Undiagnosed bipolar and/or narcissist I think). My father who was strong and silent now has Lewy Bodies Dementia and is "disinhibited." After reading some of your posts I suspect some of your LO's suffer from LBD. Key characteristics include periods of lucidity (always in front of doctors and others) leading them to believe nothing is wrong, and delusions and hallucinations (this looks like schizophrenia from the outside). I am an only child and live in another state but have been going out to help every six weeks or so. I've come to think of my parents as mutual combatants. My father's verbal abuse (fueled by the paranoia) is non-stop. My mother is starving him, poisoning him, stealing all his money, trying to 'send him up the river', 'banging' all the men in the neighborhood. Ha, as if she had any time. Every time she thinks, that's it, I need to place him, he is lucid for a couple days and she thinks she I can't do it now. I am afraid the stress will kill her.

Anyway, I was feeling resentful that I had to take care of people who didn't take very good care of me finally felt forced to see a therapist after my father tried to have sex with me. The therapist and I we talked about the advice from all religious traditions and philosophies led back to forgiveness being the key to peace. I decided that I wouldn't be able to properly care for my parents until I got past my resentments and forgave them. I found this forgiveness meditation https://www.youtube.com/watch?v=vNp6C1Rq-Ow and listened to it every morning for a couple of weeks. I found all my agitation around past hot button issues disappeared. In fact, my mother is much easier to deal with these days, I think because she is too tired to be mean, and I can see that all her meanness comes from her own insecurities. She is doing a pretty good job with my Dad all things considered.

Anyway, I wanted to share the meditation with all of you. It's easy, it's free and non-addictive. And it helps us do the right thing. So let's put on our big girl panties, be kind to our ailing elders (jerks or not) and especially kind to ourselves cause this is so hard!

Best to all of you.
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The best thing you can do where financial matters are involved is to never ever ever give anyone access to your financial matters, your bank accounts, assets, insurance policies, etc. as long as you can take care of yourself, don't give anyone access to nothing. If you one day discover someone's gained guardianship or some other position over you, one thing you can do is put a fraud alert on your credit and freeze it for starters. For Social Security, call them up with your banking information and other stuff and tell them there was a fraudulent position taken over you and ask them to put your Social Security on one of their debit cards. You can either take one of their debit cards or just move your Social Security to a new bank and alert the new bank to what happened and have them set up your account where no one will grab it. you can then contact an elder care attorney yourself. Set up your will and the other estate planning, protect everything you have that is of value and take inventory of everything and let the lawyer put it in your file. With your doctor, add your lawyer as an emergency contact number in case of something happening to you. That way, the lawyer can step in and intervene where needed
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We didn't organise POA for my husband as I thought there was plenty of time to do so. At that stage, dementia was manageable and whilst I knew in my heart that he would need eventually to enter a nursing home, I also imagined that there would be plenty of time. There wasn't... Lewy Body's progressed so fast to the point where he wouldn't have been able to sign documents.

However, having learned from that, I have organised that my son have POA in regard to myself. I probably ought to think about putting my home in the children's names also.

I'm unsure as the whole financial situation can be a minefield.

I must say here that the local council, due to their underhand dealings and theft (proven) almost forced me to sell up and fork out massive amounts of money that was not owed to them.

They (council) actually had themselves appointed as Guardians, and stopped all my husband's pensions at source... leaving direct debits and insurance unpaid ..

Please organise POA with someone absolutely trustworthy. It is NEVER too soon to get this organised.
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Someone on here mention being a POA for a friend. Be very wary of being someone's POA if they happen to be starting to become demented, this could very well spell disaster and only having a POA past a certain point when a person gets real bad is a big red flag because the demented person is sitting duck for vultures who prey on the elderly, especially those without any more mental capacity or competency. This actually happens a lot when someone only has POA over someone, this can be very tempting to start stealing from someone even if you know them very well. Be very careful and very wary of being someone's POA if they become demented or get Alzheimer's. By this point they need a guardian and not just a POA because POA can actually take advantage of people in that state of mind. Yes, i'm hearing this is pretty common much to my surprise. Don't get yourself into a situation where you could be tempted to go too far and possibly get yourself in hot water at some point, you'll come out on the losing end and get that dirty end of the stick in the end. Don't go there, just don't. Do the right thing and keep an eye on the elder and if this friend or family member actually needs a guardian, doing the right thing to gain guardianship legally through the legal system. Guardians I heard are monitored when they manage someone else's money and assets. You can keep a nursing home from grabbing the person's assets by preparing ahead of time before the nursing home is needed. You can go through lawyers who actually specialize in estate planning and protect your assets from nursing homes and prevent those nursing homes from grabbing them. If the person happens to rent, some landlords or managers can be vultures, even if they seem to be good people on the outside. What do you need to do is to protect that elder legally so no one can go in and start looting that person's place if they happen to die at home. I think new laws should be in place to really cracked down on people who go in and start looting in crisis situations even when someone dies. This is why everything of value should be locked up and locked up well out of sight. That way if you happen to die in your rental for instance, your landlord or manager can't steal and if they do the right people who execute the deceased person's last wishes will notice if somethings missing, especially if they know that person well enough to know what they had right before they died. If you know someone well enough, you know who comes and goes and when. This is why setting up your will and other arrangements to protect yourself legally is a very smart move.
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I'm so glad to have found this site. Reading through all the comments really does help assuage the feelings of guilt just a little. For me, it's my husband who is in a nursing home. He has advanced Parkinson's disease and Lewy Body's dementia. A sufferer for 30 years, but only the last 10 years or so that dementia has really taken hold. No winners.. No survivors. But just take it day to day....
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It sounds like maybe your daughter has the exact same problem as you're having. Sometimes those feelings may be a sign to just move on and don't force yourself to do what you struggle to do. Your mom is not the same person anymore since she has Alzheimer's. Alzheimer's changes people from who they used to be to someone they aren't, that's not her anymore and I feel that you're sensing that you're going to see a complete stranger who is no longer your mom. Biologically she is but the person she was is no longer her. This may be exactly why you're feeling like you're describing. My foster dad is seriously demented to the point he's no longer daddy anymore. Do I miss him question yes, absolutely! I still love him but his guardian who is likely just in it for the money won't let me see him anymore. I don't feel she intends to protect me against what happened to him, I think she was just in it for the money and that's my opinion and what I'm feeling. You may love your mom and you would miss her, but just remember she's not the same person anymore. I don't know what all other reasons may cause you to feel physically ill over going to see your mom at the nursing home unless there something going on that you don't know about and the physical illness is trying to tell you something. Listen to what's going on and follow any gut feeling you may be getting because there may actually be something very sick going on over at that nursing home that you don't know about. I don't know if you know it, but all too often there is abuse going on in nursing homes along with neglect. I would hire a private investigator her to find out what is really going on in that nursing home that you don't know about. I would also set up some kind of remote monitoring like start with a hidden camera for starters. Start there and get one that will let you look in from your smart phone or tablet. Record anything you see going on and run to the office of an elder care attorney if you see something suspicious. You would not be feeling physically ill if there wasn't something really bad going on at that nursing home, you don't feel like that for nothing. Obviously there something going on that you just can't see you right now and God may be trying to warn you for all we know. You may not see it or hear it or know what's going on or even understand why you're getting sick at the thought of seeing her, but obviously there something more going on then you know about or you wouldn't be feeling like you're feeling. Definitely check it out now!
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I am a POA for a friend I have known for 50 years. She gradually started losing it mentally some years ago and her husband was not only oblivious to what was happening, he too developed problems and could not take care of her. I did everything humanly possible to help both of them and keep her home where they both wanted her - but it was no use. Eventually she got so bad, she became like a zombie. I do occasionally need to go and check up on her (I live in another state) and when I do, I am so upset and horrified by the environment I have nightmares for a long time after the visit. She is well taken care of and seems contented but it kills me to go there. Her husband visits her weekly and it doesn't seem to bother him - but he too has problems. No, it is not wrong to hate to visit a nursing home. It is nice if you can handle going and try to bring some joy, etc. to the patient but if it is going to destroy you mentally and physically, then do not do it. You are probably younger and need to take care of yourself so you don't end up in the next bed.
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My Dad passed away in 2005 and he had Alzheimer's and now Mom has it. She is in an Assisted Living Facility. Within a 2 year period she went from living in a Senior Apartment to Assisted Living. She doesn't talk much and I am afraid she is losing the ability to speak because she hardly speaks and when she does it makes her cough. I just dread the day when she doesn't know any of us kids anymore and I know that is coming very soon. I am also at the point (I hate to put this in writiing) that I dread going to see her. It is so sad and I get so depressed and then I feel guilty. All I know is that we do the best we can and see them as often as we can and try to deal with it.
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