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My mother is 80 years old and has been in Assisted Living for 2 years. She is able to take care of most of her personal needs; however, she cannot cook for herself nor take her meds by herself. Both of these needs are reasons why I had to sell her home and move her into Assisted Living. I lost both my father at an early age, 48, due to a brain tumor and my brother, also at an early age, 44, due to alcoholism. My mother has had quite a rough life, and I cannot seem to make it much better. I was dx with Multiple Sclerosis in 2008 had to leave my public job in 2012 due to disability, My physicians have strongly stated that I cannot take care of my mother physically, mentally or emotionally. By doing so, exacerbation of MS symptoms are likely to occur.


Even knowing that I should not take care of her, I cannot get beyond the guilt of having to move her into a nursing home, but I don't know of any other options . . . This decision is absolutely breaking my heart . . .

Some of our very wise posters here say that you should only feel guilt if you have done something wrong. And it doesn’t sound to me like you have done anything wrong. You are neither responsible for your mother’s condition/needs or your own. You did nothing to “deserve” either one. But you are responsible for caring for yourself and doing what’s best for you. You have considered your mother’s situation with the help of her doctors and yours and made the wisest choice for both of you. There is no shame or guilt there. Mom will be fine. You are not abandoning her. You are doing what’s best for both of you.
(16)
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My sis works at an AL and many families strongly resist the idea of moving their care recipients to a higher level of care even when it is clear their needs are not being met and they are not getting any advantage from the ambience and activities - it's a psychological barrier that is actually harming rather than helping. You're not sentencing her to jail you know, she will still be able to function very much as she always has. Yes, a nursing home can seem overwhelmingly depressing because many (most?) of the people living there have very high needs but as you become accustomed to the sights and sounds you begin to to see them all as individuals.
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You haven't done anything wrong, you are doing what is best for her and you both. Guilt is a self imposed emotion, driven by fear and that is the 60K question...what are you afraid of? I am sure that she will do just fine, she will be safe and cared for, that is the bottom line. Don't do this to yourself.
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Depending on location, there might be personal care or memory care facilities which in some cases, may cost less than a skilled nursing living arrangement. Ex: in Pennsylvania, SKN runs around $10,000.00 a month where memory care costs are around $6,000.00 or $7,000.00.
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Good ideas here. Don’t beat yourself
up: you don’t deserve that. Everyone must take care of the self first; otherwise you won’t be able to help anyone! Peace & some serenity to you! 💗
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There may be many reasons why you are dreading it and most will have to do with emotions. Yes, no one ever said I want to move to a nursing home. (I prefer to call them the accepted term Long Term Care as that is what they are. ) And yet, there are practical reasons for doing so and they are based on the medical and assistance needs of the individual. We had to move my dad from AL to LTC, and I was sad but knew it was the next right step for his disability. So as I often say, make this decision based on your head and not your heart. It’s ok to grieve that your mom has gone further downhill, but don’t let it get in the way of what is practical and in her best interests as far as needs and safety. Also your needs are not subservient to hers.
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I think everybody feels the same way, it is a very hard thing to do. But, really, sometimes it is the only thing you can do. My mother was not even aware of where she was. She would sit and stare. I would go see her often and it broke my heart but there was no other option.
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Could your hire a home care aide to help with cooking and medicine and other needs there at the AL?
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I am guessing that she has to move from AL to NH due to having spent the money from the sale of her house so now Medicaid needs to pay her bills and the AL does not take Medicaid.
There may be other facilities that could be used as well, depending on the state you live in. We have my mother in a supportive living community here in IL. It is supported by some state assistance so it is about $2200 a month cheaper than where she was living. They don't provide skilled nursing care but there are nurses there that give medications, and they have caregivers, My mother is ambulatory at this point, and goes down to the dining room 3 times a day for meals and goes to play bingo. It is very much like AL, but when she runs out of money, Medicaid will then start paying for her and she can remain there as she declines. They don't provide skilled care or therapy so if she needs skilled nursing or if she falls and breaks a hip and needs rehab she would have to go elsewhere at least temporarily but for now, this works well. I just googled "Supportive Living" and there were several websites that talked about it so you could perhaps find a community near where you live.
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Based on what you said your mom was able to take care of herself except for meals and medication.
If those were the only two issues then she may have been able to stay in her home instead of going to AL.My dad after having a stroke in 2017 and not having use as his left hand couldn't cook or do his meds.I arranged for a program called Meals on Wheels and he gets lunch and dinner Mon to Fri.He is able to fix cereal,Danish etc for breakfast,and thankfully can manage tv dinners or prepared meals on the weekends.
My dad is a veteran and was able to get a medicine holder that not only is easy to open but speaks and goes off twice a day to remind him to take his meds.It will continue to go off until you push a button.He also has a nurse twice a month to fill the med holder as well as check his vitals etc.A CNA/HCA 4vdays a week.I know this is a mute poi t now but I just wanted you to know what options there are.As far as moving your mom. Your doing what is neccessary and not what is convenient.Don't beat yourself up.
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You are taking care of your mom the best you can. We were looking at AL places for mom and many (not all) require money for 2 years of stay after which they will accept Medicare only if you run out of money. Another words elders can live out their lives there. If your current place doesn’t have this option maybe you can find another AL if you have the 2 years Just ask up front what happens if she runs out of money.
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Dogparkmamma,
Supportive Living appears to be unique to Illinois. I was unable to find anything in AZ...search only provided me with info about IL. Too bad, it is a much needed idea,
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This breaks my heart. You have utterly no choice in this matter. But this is an awful choice for you to have to make. My heart goes out to you. I hope against hope someone somewhere has some idea what you might do in this awful situation. I cannot think of a single thing, I will be honest. There just seems to be no choice in this matter.
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Don't feel guilty!  You have done all you can.  IF possible, you could go see her daily or as often as you can, and make it an easier transition for her.  Being with her and maybe doing some activities that she is able to do, or reading or doing puzzles or playing games would make it seem less institutional.  Hope this helps at least a little.
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Have you checked with Elder Care?  They have options before moving a loved one to a nursing home.  I have my parents in an Assisted Living facility and they are on Medicaid.  It helps supplement what they are paying.
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Such a challenging and sad passage and you are a kind and caring person. One can only do so much... even with awful options. Continue to do your best for Mom and Yourself. The heartbreak is for real, forgiveness is too.
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You have a lot going on here. Your care and your mothers care are both important.

Some independent, and assisted living places have on site care you can purchase or you can also bring in someone. This can be less costly than full range care. Medicaid can help support long term care. Shop carefully, and dont judge a book by the cover. Eldercare may have a list of things to look for and consider. Also look at medicare ratings and reviews.
You cant change your mothers past life circumstances, you can positively effect your life. Enjoy visiting her.
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How about getting a sitter for her, or a part-time one-on-one person to stay with her to help out?  My mom has been in AL or MC for 3 1/2 years now, and as she deteriorates due to dementia and Alzheimer's, I am having to look for a sitter because I simply can't be there at the facility 12 hours a day.  There is no one else but me, and if I give out, then what?  My mom will be 90 in March.
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I am so sorry you have to be in this position. It is the most heartbreaking decision you will probably have to make. My heart and definitely my prayers go out to you. I cared for my mother for many years before health issues, both hers and mine, made it no longer possible. To be put in a position to have to do what I swore I would never do was absolutely devastating to me so I truly understand what you are going thru. This is what I did.

I did research and found a Private Care Nursing Facility. I am from Texas so I don't know if you have any where you are from. But they are small nursing homes, usually with 15 patience or less set up in private homes. They also run much cheaper usually then an actual nursing home and depending on if your mother qualifies some of the cost can be taken even of by government programs. The home I put my mother in helped me look into my options. My mother quickly settled in, even tho she had Alzheimer's and the transition was a little rough at 1st. She was able to get up and walk all around the house and outer gated back porch area. She even got involved with helping take care of the sweet older lady in the room with her who couldn't get out of bed at all. It really became "home" to her and I was able to go regularly to see her, play games with her and take her on outings with me. I would highly recommend a home like this. But do your research and visit the place 1st to make sure it is something you feel.comfortable with.

I really feel the move was the best decision for my mother as well as for me. In fact I think that the whole process was harder on me then it was on Mom. I had always wanted to be able to take care of my mom and give her the best care possible. When I finally came to realize that giving mother the best care possible was doing exactly what I did, putting her somewhere where she could get the proper care she needed to keep her as safe and healthy as her and my circumstances allowed, I was able to get over the normal feelings of guilt and enjoy what time I had left with my dear sweet mother. Sorry to be so wordy and I hope this is helpful to you.
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I am confused. You say you had to move her to AL 2 years ago and you have MS.
You made the Best Decision! Your description of her needs are things AL can address, and are much less restrictive an environment than a NH.
Is she close enough to vist? If not, call the church of her faith, or any with a Community or Senior Outreach Program. My uncle ran such a program in AZ...they served every one..not preachy.

It sounds like helping her network. To make friends inside & outside the facility. Have visitors..some who can just take her to coffee or a park for a walk, or go shopping..or window shopping.

These are the things that will make her AL place a home. Part of a Community. This is what you can do! Do it gradually so neither of you is overwhelmed by the work or the changes.

I hope you will then reach out and di the same for yourself. Reaching out now. Finding kind people, those who have shared or related experiences, and being familiar with resources you will need in the future will be a big help for you.

Don't you or your Mom feel like a burden. People out there are looking to have purpose in their lives, be less isolated, be helpful to their neighbors. They can't do that if no one invites them in!

Knowledge, friendship, love...have little value if they are not shared. Open the doors.
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She was already in a facility, so there won't be the same separation anxiety that would exist if she had to leave you and your home. There will probably still be some issues for her because it is a change. Try to find a location as close to you as possible so that you can visit regularly.

Are you having to move her now because $ from the house has been depleted? Or is her physical ability that met AL care is now lacking? If you still have funds, you might ask social worker about another facility that provides a little more care before reaching the NH level. If you've run out of funds and NH is her only option, just try to make her new room as homey as they will allow and visit often to help her settle in.
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I guess there is a method in the madness, but weird Medicaid will pay for SNF, but not for AL when SNF is much more expensive, though I suppose Medicaid does not pay the facility the same amount one would pay private pay?

If the issue is she needs more help than AL offers, that is one thing but why wont Medicaid pay for AL if that is all that is required?
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Medicaid does pay for assisted living and or some of the associated costs in some states. But also, not all AL’s will take Medicaid. Some won’t take it period and some require you to self pay for at least 2 years first.
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Have you been able to file for Medicaid for your mother? I am so sorry that she is going to an SNF, BUT she will be cared for. Prayers to you. Please attempt to remove the guilt from your mind. 💞💞
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I'm going to step out an emotional limb here. Right now you are obviously facing lots of stress by having to make this heartbreaking decision...so isn't that alone a potential trigger for a worsening of the MS symptoms? Would you feel better if mom and you shared the same roof? I'd be asking some questions in re to what kind of supports you can bring in for her (that might help you as well). Are you of senior age, enough to qualify for some benefits. I just saw an article posted on a similar situation, i.e that people in assisted livings are being forced out and it is one of the most common complaints. Seems these places just see $$$ and then they don't care. Find your county office on aging or your area agency on aging to direct you to the resources to see what's available...the nursing homes aren't going anywhere and if you want to give it a try, I'd say this is the moment. If it doesn't work and isn't healthy for you, you will know you did what you could. Don't overlook help with housekeeping and meals on wheels...even if they do that just for mom, it is less you have to worry about. IMO doctors often make statements without taking time to fully comprehend a situation in its entirety.
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I am a nurse and I started a personal care home in my community for that very reason. People move into these very fancy facilities and find themselves in this very situation when their money begins to vanish. I started successfully opened The Pines at Hickory Valley Inc. in Chattanooga, TN. Only three people live here, I currently have one vacancy and possibly will have another soon. See photos Facebook the Pines at Hickory Valley. It's a very rewarding and fulfilling indulgence. If you are far away from here you can research in your area and I am sure you will find someone with a similar idea. God bless you in your efforts to find the best place for your mom. 🙏🙏🙏
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Contact me for further assistance here.
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