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I just put both of my parents in a nursing home. My Dad has Alzheimers and my Mom has mild to moderate dementia. They were both in the hospital and I moved them from there. My Mom is so mad at me, she says I put her there to die. But she can't take care of herself well anymore, let alone my Dad. He really needs to be there. They were living on their own and the conditions of the home were deplorable and she was either under medication him or over medicating him. She was not taking her own meds. I am single and work, I get no help from my siblings even though I have some. I had one brother who helped but he had a stroke himself 2 years ago and cannot walk or talk anymore, so that leaves me. None of the others help me, although they like to judge me and bad mouth me. It has been the hardest decision I ever had to make and I feel sooooo guilty. I feel they will be better cared for there if my Mom at least gives it a chance, but she is so scared. She thinks they are going to come and get her at night and hurt her or kill her. She cries and begs me to get them out. I have visited everyday, some people tell me not to, but when I don't Mother is so upset. She gets upset and gets my Dad upset. He would be ok, if she didn't continue talking about it to him. It hurts so much to have her say I don't care about them and just want them to die. How does one get through this without any family support???

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Hi, everyone:

I like ezcare's comment about the "role reversal." When our parents become elderly and infirm, they become just like small children - incontinent, need to be fed and bathed - except they weigh 100+ pounds instead of 20. When it because obvious that I needed to put my father into assisted living and then into the nursing home, I did not feel ONE BIT guilty. I knew he would be safe there, get his meds on time, have other people around him, have some social activities provided, and if he went missing somebody would notice. This would not have been true if he were still in his own home alone. I was only around 40 at the time, working full-time and lived 9 hours away. I had no other options.

I did my research,and scoped out three different nursing homes that were located near the area where my father grew up. I brought him with me to visit each home so he could see what the options were "for the future" when the time came - and then allowed him to choose which one he liked best. He was aware that he was just "not with it" like he used to be and he verbalized that he overestimated his own ability to live in his 2-story colonial house alone and function independently. I kept talking up the advantages of having all of his meals prepared for him, his laundry done, room cleaned, etc.

I did what had to be done, handled all of his affairs without assistance. My husband agreed to rent a U-haul truck to help me move some of his things to the assisted living. I still remember that day.......because as we pulled away from his house for the last time, he turned to me wistfully and said, "will they have coffee there?" (He loved his morning coffee.) I assured him, yes, there would be plenty of coffee there and he could have it whenever he wanted. (They had a 24/7 coffee & tea bar there for the residents.) That seemed to satisfy him and we arrived at the home without incident.

I do not understand all of this "guilt" that I keep hearing on this forum. Why should we feel "guilty" about doing what is right for our parents, what is in their best health & safety interests, when they get to the point where they are no longer able to live alone? Believe me, you would feel far MORE guilty if they were at home and something happened because you did not have the medical or emotional expertise to know what to do.


As to the person who said their parent was "soaked in pee," that's often related to insufficient staff at the home. Most people in nursing homes are incontinent - and the staff would do nothing but change diapers non-stop in order to keep everyone as dry as we would prefer. Are any of you going to tell me that your own children NEVER sat in a wet or soiled diaper - even for a few minutes - until you found the time to change them when you were a young mother? It is curious that many of us hold a standard for the nursing homes that we did not hold for our own children.
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my 94 year old Dad is now in a nursing home and begging to go home. his mind is sharp, which makes it more difficult. there's not much mental stimulation or other sharp people to talk with. he fell a lot at home and the last fall put him in the hospital, but he insists he could be fine at home. he wants to go back for "at least a little while" but he really wants to go home. it's hard for me because i completely understand how independent he was a few weeks ago, even tho he'd fall. he drove and everything (not saying he should have)
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My heart goes out to you. And I think you are doing the absolute best you can. If you weren't you wouldn't feel so guilty. I speak from experience as I am an only child who lives 2000 miles away from my 93 yr old dad who just until last week was living independently at home, but with great neighbors, family in area and a little help from a home agency. In a way its worse, as his mind is very sharp . He has mobility and balance issues but otherwise fairly healthy. I feel terribly taking him away from his neighborhood of 60 plus years, but he can't afford the in -home private pay care he needs to prepare meals daily, help him dress and be there at night when he gets occasional anxiety attacks and shortness of breath and starts calling the neighbors. You can see my situation is different yet the same. Like you, decisions all on my shoulders. Oh - he chooses not to come back to CA with me and my husband because it takes him away from his home city/friends/culture. So assisted living seems the right thing . Not my first choice and the facility not my first but its what he can afford and it's pretty good. Like you this is the hardest decision I've ever faced. My mental physical and financial health suffer ( I travel here a lot and don't get paid when I don't work). I weighing the risks of happiness vs safety for him (he tells me he's not happy there and wants to be home). For you the scales are a little different but its still damned difficult and everyone around you seems to know what YOU should do. Follow your heart and your critical thinking Don't dig your own life or health in too deeply - you still have years to live. At same time love , love , just love your parent deeply and openly whatever you decide. In the end whatever you choose will be the right thing because decision was made out of love.
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Deciding to place our parents or spouse is never made without much soul searching the truth was my husband needed placement a good two years before I made the decision I kept hoping others would speak up he went to over 100 doc visits alone in a 10 month period also many hospital visits and over 15 times in rehab and I seemed to be the only one who got the picture until my health gave out and I said I could no longer do it then EVERYONE except him agreed with me so no one makes that decision easily in fact most put off the decision too long and suffer along forever- I would never put my kids through what I went through and we went through with my MIL and what my sister is going through and I do not feel guility for placing my husband because God and I know how difficult it was.
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That figures that it isn't made public. A lot of help seniors can get is not made public, guess that is one way they keep them from using it and running up a big tab. I will have to question the nursing home about it. And no, just pulling it won't work, the problem is in the root and nerves. Anyway, it is worth a try, I am tired of having to take her for pain shots two hours away in Fargo. If we can settle this in town and give her some relief at the local dentist I am all for it.
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Dear IMW124,
I'm bringing my dad to the dentist today and he is also on Medicaid. After I pay the bill, I turn a copy of it into the nursing home and they deduct what I paid the dentist from his total living expenses that I pay for him each month. You may want to check into it at the facility where your mom lives. It isn't very public, but I happened to read something about it one time and inquired.
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Imw, seems like there are many bumps along the way. At least its not like my brick walls and endless nightmares. Haven't heard of Caregiving being smooth sailing. Can she have the tooth just pulled instead? That should be a lot less expensive. ~Pudding, anyone?
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I just hit a big bump in the road today. Took mom to the dentist, she needs a root canal and how am I going to pay for that now with her in the nursing home on Medicaid? She will have to sign up for denal assitance now, I don't even know if this will be covered. Then on the way home we went past the place where we used to live in our apartment together and mom started whining again about wanting out of the nursing home. I guess next time I will have to somehow avoid going past our old apartment across the street from the dentist office. I guess the next hurdle I have is having to declare bankruptcy, having to pay all these dental bills and back medical bills and moving expenses so we could be closer to my sister here. It is my own fault though, I did not manage finances very well. Once I get past this financial bump hopefully things will get better. Fortunately I have a good place to live here with the rest of my family. Both my sister and I were able to go visit her today with the MLK holiday, it really improves her mood when we are able to visit.
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SecretSister - Exactly! "Now what?" - that's the BIG problem!!! Through this forum I hope we can help each other to make some decisions that are the least harmful for both the person needing care and the caregiver. NANCE, you are welcome. What I wrote is what I have come to understand after MANY years of searching for answers. But my understandings are not everyone's. I am glad they were of help to you, though.
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lcs, that was great! But for many of us, it means, "Now what?!"
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Ics--thank you--I needed that.
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If parents can "make it on their own" then I don't think anyone writing to this forum (and as far as I have seen, ALL are very caring people) would want to move their parents out of their home. It's when the parents CAN'T make it on their own (even with all sorts of help coming into their private home) that things get tricky and all the anguish starts. I definitely would not want to put my children through what lmw124 went through. We go to hospitals (if we are lucky) when we need to - we go to assisted living residences when we need to and then to nursing homes when we need to. Why pretend something different? All we can expect of our children when the time comes is that they help us find "good" residences and nursing homes and that they visit us when they can. It is up to us to make the best of the rest. I feel that life is about reality - not some dreamwish. We just have to be strong enough to accept this fact. Moving into an assisted living facility or even a nursing home is NOT the END of life - it is another beginning.
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Well I'll have to jump in here, just have too. My mother use to tell my sister and I not to put her in a home. Hm a home is what they called it then. Things have changed so much now-a-days.

My mom has always been what you call the cat's meow, meaning she was the bell of the ball. Even now she does not look 90, however she is a shell now. Her voice has become scragley, and I have to ask her to repeat several times, her mind goes and comes, she cannot do anything for herself. Not even open the blinds in the morning which is something she loves to do. Her quality of life is just gone, gone far away and it makes me so very very sad.

Every now and then she says "when I get better" and I humor her. She is constantly in pain, arthuritis ain't no joke to a 90 yr old, and any kind of hip replacements just add coal to the fire.

She sits and stares out of the window from her bed yet when anyone pulls up she ask who is that so I don't think she is really looking at anything at all. It's sad to me, yes sad.

She says "how now brown cow" all the time, and counts off the months of the year trying desperately to cling onto any type of hope.

I am seriously considering putting her in a home too, mainly because I know I can't give her what she needs. I've talked to the care taker who will always discourage me (they say it's because they want to keep their jobs, I don't know) but just know that you did what you needed to do and don't let anyone tell you different. To thine own self be true!
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Hi Iam Bree, I am in the same boat...I havent made that leap of putting momz in a rest home yet...but everyone here knows what I have been going through...and what torment has led me here.
The people here have been very loving and supportive to me...a blessing. My momz is verbally abusive to me...she was always that way, now with the alzheimers its worse.
I am a only child. No help from family ...or friends.
I am moving slowly getting things handled...have paperwork in progress....nursing home waiting for records...I AM IN THE PROCESS of getting her placed.
I feel guilt. I will be blamed for everything under the sun I know it...hell I am most of the time anyway.
My heallth is failing because of all of this...All I can do is keep you in my prayers..you have done the right thing. YOU ARE BRAVE,YOU ARE A GOOD DAUGHTER!
I pray GOD GIVES ME YOUR BRAND OF STRENGTH!

Bree
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I took care of my mother for five years, watched her gradually go downhill with dementia, and become more and more unsteady on her feet and went through several falls, in which each time she got more fractures in her back from osteoporesis. Dealing with caring for someone with dementia on a 24-hour basis with no breaks gradually broke down my own health and I was exhausted by the time we made the decision to put mother in a nursing home. It was made more difficult by the fact that my mother became very beligerent, especially towards my sister, and tried to sue us for putting her in the nursing home. Unfortunately she lashed back at me because I had, five and a half years ago, promised her I would take care of her in her apartment. It was a big mistake for me to make promises I could not keep, not realizing the my own body was going to give out trying to do this on a 24-hour basis without very many breaks. Mom became very dependent on me, felt like she could not make it on her own without me, and I really dug my own grave by making myself indespensible to her. I tried to get outside help through the state of North Dakota, but since we live in a small town there were few workers available that had signed up with the caregiver program and went through several workers that were hired to help out.

At this point things have pretty much settled down and mom has resigned herself to being in the nursing home. Mom is feeling better now, as her medications have been controlled better. I try to get over to see her every day for several hours, and my sister comes to visit as much as she can with her work schedule. Having her family visit is very important to her and that is the one thing that is helping her to adjust to the nursing home. Of course again I am making myself indespensible to her.

I tried to muddle through this for as long as I could until my own doctor told me I had to let go of the 24-hour care in our home, physically I just could not go on, and it was tearing me up inside thinking what if I made a mistake with her medications, overlooked something in her care, or what if she fell and broke her hip, or what if she started wandering out of the apartment while I was aspleep.

Anyway, 2009 was the most stressful, worst-case scenario year I have ever had, the most hear-breaking thing I have ever experienced is placing mom in a nursing home and then having her turn on us and take us to court, and having to move her things and mine into my sister's home (moves are always traumatic). I almost had a nervous breakdown over all of this, but I pretty much pieced back together now with medication and therapy.

The most important thing you can do to help your parents adjust to a nursing home is to be sure to come and visit often, do little things for them that make them happy, and make sure the place where you have put them is a good facility. A lot of times I have to be mom's advocate so things can get done properly.
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Hi Belinda. I don't understand why, or HOW, you could put your Mom in a nursing home if she has mild to moderate dementia. Why couldn't she remain in her home. I disagree with taking parents out of their homes and making them go to assisted living and/or nursing homes if they can still make it on their own. Think of how you would feel if the tables were turned. Really think about it, ALL OF YOU? Would you want to be forced to do this? Even if it was "for your own good?" I, for one, would NOT. I would rather muddle through it until the end. In my own home. If that was my desire. That's what I think, no matter what kind of spin everyone puts on it.
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Very well-written and thoughtful, Lilliput! Thank you.
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I often think that we need to have a more humane way of dealing with aging parents and realatives.

It is no longer realistic to promise anyone that they will not end up in some type of facility. I think that we make these promises to our parents to help them overcome their fear of abandonment. It would be kinder if we had a frank discussion before the moment occurs. In that way, parents have made their wishes known, provided the caregiver with instructions, and understand their childrens' limitations. Too often caregiving is "sprung" on the child who steps up to the plate. This decision should not become a "lottery."

Perhaps we should focus on helping children have a meaningful dialogue with their parents before situations reach "critical mass." In this youth-fixated country of ours, we view aging as a disease. When was the last time you saw an nice, craggy, older face on your favorite television show? The result is fear of getting older. We fear aging...fear loss of independence...fear death. This is not a healthy way for anyone to live.

Those of us who are caregivers now need to speak up and make our wishes known to our children and future caregivers. Maybe our experiences will be another important legacy that our parents will leave us.
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Belinda, One of the terrible things about Alzheimers and dementia is that the normal adult reasoning and judgment processes go away. Your parents probably can't make a good decision about what is best for them. They proved they couldn't do it themselves based on your description of their situation when they were at home. And yes, of course your mom is frightened. She is in a strange environment and her brain isn't capable of adapting well because of her dementia. If it helps, when I still had mom at home she had rough nights and would tell me about people hiding in her closet trying to kill her. Does the NH have a chaplain on staff that might be able to talk with your mom and calm her fears?

The guilt you feel is normal. Your head tells you you are doing the right thing, but your heart is torn up. I know, I've been there. Doing this alone is what is so hard. You need to find some support other than your family. I don't know what it is about families, maybe they are in denial, maybe they just can't handle seeing their parents declining so badly. You are the caregiver because somewhere in you, you found the strength to do so. They have not. You can't change them, so you need to look out for yourself. Your local area on the aging will probably have a caregiver support group if the face-to-face thing would help. This site is a lifeline for many caregivers. Stick around, we're good for each other.
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I think the best thing you can do is sit them down and ask them what they would like to do given their situation. Based on there needs (24 hour care) their finances, and realistic goals from family members, what options do they have. If they walk through each option, at least they will feel that they had a choice, and they may see why you make the decision you did. And maybe they can come up with a solution that will get them out of the nursing home. That may be moving to another nursing home, that is cleaner/prettier, or to a smaller 6 bed home in the community. The other possibility (finances permitting) is to pay for a Caregiver to come to their home daily, a few hours in the morning, a few hours at night. It's surprising how affordable this option can be, especially if your happier there, it can be priceless.
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Hi, I have been reading the 1st five emails and they are really good. I worked as a activity director for 17 yrs. in nursing homes.yes some are very good, some are not..and no, you do not always get the serviecs you think you pay for. The most I have read from these emails is that, (1) you all have done what is best for the patient.(2) you are doing the best that you can under your own problems that you are going through.no you will not get much help from your siblings as they themselves do not know what or how to take care of your parent, but they sure can give all the advise and keep putting guilt on you..Then we have these other brave siblings that are doing the right thing and they know they really are taking care of their parents the best way they know how. (3) your faith and turning things over to God will help you the most, or talking with good friends and asking for help when things are really bad. I have learned the hard way too, I had to put my father into the mental ward in columbus and yes, that made me feel like a failure as a daughter, but I knew I had to do this for his own sake and others as he was out of control and needed lots of meds and care. He had a bad case of dementia, but had turned into alzheimers. Now in my life I have my husband to attend to as he now has alzheimers. I find this so hard to take care of him now, as I too have lots of health issuses and I am in the process to find a home for him also, witch I have said I would keep him at home as long as I could take care of him, well I think I am having to make this all on my own as he has only a sister and she is holding down 3 jobs..so all of these things are really up to me and I shall make this choice soon. God bless each of you and he shall provide...
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Belinda1, do your "bad-mouthing" siblings visit your mom and dad in the nursing home? If so, do you know if THEY are encouraging your mom to continue thinking you put her in the nursing home to die? Are they making her become more upset than she would be if they stayed away? Who in your family has been appointed legally to look after your parents finances and their personal care? IF it is you, and IF your siblings are upsetting your mother with their visits, I wonder if you might have the legal right to put a stop to their visits until they become more supportive of your decision?
I imagine you checked out different nursing homes and found the best that your parents could afford. I imagine also that you are dropping in at the nursing home at expected AND unexpected times to be sure the staff is treating your parents well. If your parents are in a "good" nursing home and you visit with them often, it sounds to me like you are doing all that one single working person could do!!! I am sorry about your brother who used to help you with your parents' care but had the stroke and now can neither walk nor talk. As for your other siblings - who knows what's wrong with them??!!!
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Same happened to me--I'm 70--Mom 93--I even looked older then her and knew it was taking it's toll on me.
I took care of her for 10 plus years, we did talk about her being put into a NH-she agreed to it-saying she didn't want me to be her babysitter.
She's in a nice NH but still ask me to take her home-She is not the same Mom i use to have, but my love for her hasn't changed.
I do a lot of crying, but it isn't from guilt anymore--it's because I know my best friend and Mom has gone away and I miss her so much.
She is still very sweet, never has been nasty, maybe thats what makes it so hard.
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I spent five years being the sole caregiver for my mom. When I gave out, there was nobody else who could do it full-time. My sister is the sole breadwinner in the family and single and still putting three kids through college. There wasn't any other alternative, she was falling in the apartment and her meds had become so complicated I was making mistakes and she was wandering around at night. She did give both me and my sister a guilt trip about being in the nursing home, accused me of going back on my promise to take care of her and not have to have her go to a nursing home. I thought I would be able to do it at first, but my body gave out and the rest of my family did not have time to help me. Bottom line is never make promises you cannot keep. I did not anticipate that it would take such an emotional and physical toll on me to take care of her. Anyway, I do go over and visit her every day. She is in a good nursing home and they treat her very well there, and gradually she is getting over her bitterness toward me and my sister for putting her there.
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Each family must talk about this before it happens. For some older ones, the reality is such a shock that they can only imagine their worst possible fears. If they did not prepare for this in advance financially, their care facility may not be as nice as they would like. Sacrifice among family to care for the older ones is not just financial, it is emotional, it affects your health, and it takes up the precious time you have for your family as well. Don't feel guilty if you are truly doing your best. Let them know that you love them and make sure you make plans for your time when it comes so that you will have better options.
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Don't feel bad that you put them in a nursing home. They're gonna cry and complain until they get used to it. My m-i-l was still complaining about being in one, away from her home, 2 months later. After talking to my husband and s-i-l (she has the Durable Power of Atty.), we decided to try her here at our home.
At first, we had all the siblings coming over to help or visit. Now, I'm lucky if my 1st and 3rd s-i-l come over at all. Well the oldest
helps out maybe every 2-3 weeks, but it seems when I call to ask her to sit with her mom, she sighs and says for how long?
It's not like I call her every day or every week and ask her to do it and my husband & I take her over to her house 3/4 of the time,
as well as pick her up. The 3rd just started a new job about 6-8 months ago. The 2nd, who is a lifesaver, takes her at least one night a week every other week. Since my husband, no. 4 child, is out of work right now--he helps me take care of her. I'm Primary Caregiver. Child no. 5, my 4th s-i-l, comes over and helps give her a shower almost every week. We have her going to an elderly Day Care Center 2-3 times/week. She has a nurse there, they do activities (socialization), she gets a hot lunch, and transportation to and fro. A better deal during the day than HHA. Don't get me wrong, HHA are great--they can help you with some of the homemaking, cooking, and give showers/baths. They just can't give meds, only a nurse can.
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God and prayer have been the most helpful for me in this journey :) Also, other people on this site!
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Hi Belinda~I can understand your feeling of guilt. My thought in the matter is if you have exhausted all other possibilites for both your parents, such as daycare-etc; then you had no choice, but to place them in a nursing home. I am assuming you have looked into the possibility of assisted living for them as well.

The way I look at this is, you did what is best for both your parents, as well as for yourself. Perhaps the staff at the nursing home can help support your feelings on this, or even your parents neurologist.

What may be upsetting to your parents is they may feel as though you have taken away their independence-and unfortunately they are not able to view the whole picture.

It sounds to me you did what is best for everyone involved-and you have to support your own feelings in this decision---If you have some time, perhaps going to some support group meetings of your local chapter of the Alzheimer's Association will be of value.The Alz Assoc-also has a hotline that is open 24/7-and that number is 1-800-272-3900.

I personally have gone thru this caregiver journey, and know what it is like to place someone in a facility. I also realize how VITAL caregiver support is. It is important that you DO NOT compromise your own health-which is so easy to do.

Stay strong, and do not let your emotions get the best of you-as for the others in your family, the situation is what it is.

Good luck!

Hap
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Belinda,
It may help you get through the guilt if you think ROLE REVERSAL. At this point in your parents lives they are much like children in their ability to care for themselves and make good, safe choices. On the other hand, you are at a point in your life where you intuitively know how to handle this situation and have the confidence in yourself to do the right thing even if it hurts. Ask yourself what you would want your children to do if they found themselves in your situation. I am sure you would want them to do exactly what you are doing for your parents. Sometimes, love is as hard and cold as steel. This is certainly one of those times for you! If you did not love your parents it would be easy to go into denial like your siblings have and let things fall as they will. Then you would not have to feel any guilt because you could believe that it was your parents own fault if they screwed up. They are adults and should know better than to mess up with medication instructions or get themselves in dangerous situations. So let go of the guilt and continue to do THE RIGHT THING. You will have no regrets. I cannot say the same for your siblings once they experience the finality of your mom and dad's passing.
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Oh I do understand that all nursing homes are not the same and I do understand it is hard. When my Grandfather was ill I went and lived with them and took care of him. When my Grandmother was ill she came and lived with me and I took care of her. The last conversation my Grandfather and I had was about what would become of my Grandma... I told him actually promised him that I would take care of her. My husband is a wonderful man and enabled me to do what I had promised. Many times it is a hard thing to do but I will always, always be glad that I did. Now my own parents are 85 and 82 and we help them... I do hope to care for them as I did my Grandparents. take care and God Bless
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