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You fear is not unfounded. There are so many overwhelming stories on this site about living and caring for elderly parents. The best way to alleviate your fears is to educate yourself on alternatives for your mother's future. I am in a similiar situation and have tried to discuss my mother's future care with her, but she will not discuss anything related to not being able to live independently. I am looking into alternatives on my own so when the time comes I will be prepared for the options of her needed care. My mother knows I am not an option so she refuses to consider any other options.
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Jaye,
If Assisted Living is not a good-fit, perhaps it is time for a Dementia or AlzheimersCare facility. Often, there are sections of facilities specifically for persons with these conditions, to keep them from harm, and help them.
You might ask Home Health agency in your area, if they can refer you to what is available near your Mom.
IT is so hard to manage these events; all we can do is the best we can.
This list is really very helpful, as it provides a place to "vent" your story, and to find helpful hints fromthose who have done it already.
I hope you find just the right solution!
{{{hugs!}}}
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thank you so much for your very kind and thoughtful response. I am my Mother's POA and we have had many discussions about her meds. Honesty and blunt discussions. Sadly she just does not want to take them I would in a heart beat have her on an antidepressant but there again she will not take her meds that are already prescibed. They will not take her in the AL because of the dx of dementia. We wanted to do that before my Father passed away however he declined so rapidly we could not move him. I truely think I am going to have to employ someone to give her her meds morning and evening. Seems like a waste of money to me however my stress level is not good for me either! thank you again for your caring... take care, J
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Jaye---

It sounds like you have done an great job of taking care of your Mom!
It also sounds like you could use some more suggestions.

It might be time to consider an Assisted Living place for her--a step-up from her independent living apartment.
But before you do that, has she already set up who she wants as her POA?
Has she made arrangements for her assets? Does she have a statement on file for medical, whether or not she wants to be resusitated or kept alive artificially, and under what conditions?
Does your Mom have enough wits, still to direct making those documents happen?
Is your housing situation secure, so the State will not try to collect from your personal estate for them subsidizing your Mom's long-term care?
[[CUE: most States will not pursue repayment from relatives who would be made destitute and therefore further cost the State--that refers to family businesses the children rely on for income, or a family home, for instance--thought different States have various rules]]

I have encountered a few places with diverse ways to urge people to take their meds. But bottom line, it is the person's choice--as long as they are able to choose, they can say no.
When they are too far into dementia or AD, meds can be given to them, unless the family states, in writing, not to--at that point, the family chooses for them, or their POA does.

We had one patient enter Hospice unit, with full family support, as far as staff knew, and supportive medical staff, as far as Hospice was concerned
--the elderly woman was obese, suffered failing of many organs/systems related to her difficult to control diabetes, as well as chronic ills that made life very difficult and painful----no quality of life at all.
It was her choice to stop taking all meds, to only receive "comfort measures".
At our unit, it meant keeping her turned, clean, as comfy as possible, only med allowed were for pain; and keep her mouth moistened--all of which the unit agreed to do, per hers and family wishes, in writing.
The only trouble came from temp nursing staff from the main hospital,
or an on-call Doc: they refused to really assess pain, so didn't give the pain meds, or Docs refused to monkey with pain med prescription adjustment,
---because she might get addicted!
The regulars did the best we could with staffing issues.
It took 2 weeks for her to die.
It was heart-wrenching, yet heart-warming; she showed individual determination and strength to do what she chose. Her family was courageous enough to let her go, in love, rather than keep her alive in futile misery.
It was very hard, yet heart-filled, for her family to say goodbye; the lady was determined, as her "quality of life" was totally diminished and no way could be restored.
Keeping her alive a few more months or years, would have been cruel.

I relate that story, because some of us might find ourselves in similar situation.
When we do, we have to choose, too.
For ourself or an elder, refusing meds that can continue life for a time, what is the quality of that life? Is there increased comfort with those meds?
We must make choices we would otherwise like to avoid making.

IF your Mother is clear enough to talk with you about it, sometimes it is good to have a frank conversation about her meds; for instance:
Ask open-ended questions, like, "How do the meds make you feel when you take them? or, "Is there some trouble with taking your meds?" or "Is there a reason you stopped taking your meds?"

IF she says words about wanting to be with your deceased Father, she might be depressed, which an anti-depressant might help.
She might be persuaded to take just an anti-depressant for one month [[to see if it lifts her spirits enough to consider taking her other meds, too]]
----talk about that in terms of "just try it for that short time to see if it helps", so she understands that after that month trial, she can still choose again.

You could ask her bluntly, has she chosen to end her life?
--in which case she will also have stopped eating, and other life-sustaining and affirming actions/behaviors.
IF she has only stopped taking meds, but is doing other things that contradict dying, then those behaviors are a give-away that she is still interested in living.
IF she has stopped doing other life-affirming behaviors, she really needs more help, round the clock.. which might indicate move to Assisted Living, at least.

Or, she just might have difficulty explaining what the mattter is with her meds, and it comes out in startling statements like "I want to go be with your Father", for instance.

There might be ways to both talk with and/or cleverly get her brought around to take, her meds, "on her own"--which can help her feel a bit more "empowered", which is important for elders who have lost so much.

IF it is a matter of seriously forgetting, all the memory cues you paste on mirrors and walls, or organizational boxes, are useless, if she fails to look at or use them properly, or looks, but thinks she already did it.
At that point, it is time for someone to supervise giving her meds, in person.

IF she refuses to take her meds when someone supervised her taking them, it is time to re-assess again....
Are there too many?
Scheduled at bad times of day?
Is she refusing because they make her feel off-kilter or other side effects?
If they have to be crushed and put into food to get them down, are they available as liquids instead of pills?
If they can be liquid, can that be camoflaged in a drink she really likes? [with or without her knowledge]

There are options that might help her take them.

But ultimately it is still her choice--
--we just have to help them find the right method of delivery or better arrangement that helps them most, and to rule out other causes for refusal, before giving up on giving them.

Assiste Living Facility or someone to come in daily to assist her where she is, are options, depending on her needs.
IF she stays in "independent living", there are usually rules that state that when a resident is no longer able to to activities of daily living [ADL's] on their own, it is time to move them out of there, into Assisted Living of some kind.
When that is assessed to be the situation, get it documented by her Doctor[s], and start looking for facilities.
Also consider possible Elder Care Homes [houses converted to provide supervised living for a small number of elders only, instead of a larger facility].

She might have a hard time "connecting" with others in her housing, related to her forgetting, or insecurity leaving her apartment
--another cue it's time for Assisted Living.

People who do not know their boundaries, can be difficult. .
When they get dementia, it can get worse.
Finding others in a facility who have similar or "fitting" personalities, can be tough, with any dementia issues.
But if she moves to Assisted Living, there is more help as dementia progresses, and it means you do not have to be on call 24/7 to keep her safe.

If larger facilities are overwhelming for you and/or her, consider the Care Homes, that only have a handful of elders living in them.
Check with your County Welfare Office, to see if they have lists of these.
In the Pacific NW, we have what's called, "Area Agency on Aging", that have very helpful volunteers who can help direct people to find whatever services are needed, or point them in a better direction. They also have lists of possible housing of various kinds, or lists of agencies that provide Home Health Care.
[WARNING: The "Area Agency on Aging" is NOT affiliated with the advertizing on this website!!!] What this agency is called where you live, may differ from what I call it. ASK your Welfare office, or Social Worker about hwat is in your area.
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I have always been the caregiver in our family... I cared for my grandparents and my Father... My Mother is 85 now and is declining I have done everything I know to help her without doing everything for her. I don't think it helps her to do things for her that she can do for herself. She had a heart attack shortly after my Dad passed away and she was put on medication... She will not take it! I have set it up in planners for her and I have encouraged her, but I do not feel I can force her. She has memory problems so I have put notes on her cupboard and her bathroom mirror... She will call me whining (which I never would have been permitted to do when I was a child) and tells me she does not feel well. I know that she wants to be in heaven with my Father... She actually lives in a beautiful independant senior housing complex. We did this because she was SO lonely and was not eating. I have two sister's but they do not live close and do NOT seem to want to be "bothered" with her. I am telling you all that to say that I understand your fear of having your Mom live with you... I love my Mother I really do, however with the dementia and the anxiety and the fact that she never has known any bounderies, I think it would be next to impossible for her to live with us. I am open to suggestions about the medication problem... thanks J
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A geriatric care manager is a medical professional - nurse, social worker, etc., with special training in management for elderly people. Eldercare agencies often employ them. Perhaps the best way to find one is www.caremanager.org or search "geriatric care manager" in your mother's location. They asses the home for safety and accessibility issues and your mother for how well she is able to function there. This is especially important if there is disagreement about what to do between family or denial by your parent. There are more likely to listen to a professional outsider to help in the decision making.
Good luck. And know you are not alone. Caregiver support groups are great, too.
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LOTS of good advice!
Yes, that comment about looking in the mirror could be perceived as judgemental, but also it can be about facing one's own fears.
HOWEVER, the question was not about facing once own fears for themselves, but about knowing at a gut level, one cannot manage to care for their demented parent in one's home--which, imho, takes plenty of courage to admit.
But better to admit it before nead arises, and take steps to make arrangements in advance, than to wait for crisis to happen, and get forced into it!
SOMEtimes, elders cannot deal with selling off their assets to fund living in an Assisted Living home, or a Care Home.
They need help from Social Workers, Agency on Aging, etc., to help them wrap their minds around it.
What an adult child can do, is find some possible Assisted Living facilities, either full facilities or homes converted for Elder care, near you.
Take tours of those, get to know people there. See about taking Mom to luch there as visitors, to see what it is like. Have Mom talk with the Directors of the facilities.
At least that way, the idea has been broached.
If Mom resists, or gets angry, it is probly too late to involve her in the choice, but YOU can visit those places, have lunch there, talk with the directors, etc., to get a feel for how the places are run, and whether you would put your Mom in one of them.
Meanwhile, do what you can to gather medical and psych records, to substantiate need for the move. Document everything that you observe, that would make it unsafe for Mom to stay in her own home.
If kids are over at teh elders place every day, and worrired that the place might be blown up or come in to find Mom gassed because she mismanaged the gas heater or stove, it is time to move her out of her own place.
SOME places will take an elder in, and the elder just signs over the deed to their house, which means you don't have to mess with real estate sales of it.
But usually, now days, property needs to be liquidated.
If her property has been reverse-mortgaged already, that agency will then own her house...and Mom will need to be assessed for what other services and agencies she might need, to help fund her stay at Assisted Living.
I took Mom into our home for 6 years, and realize too late it was supremenly foolish.
We are still paying huge price for her having been here, and some of the damages will never be able to be fixed.
IT is UNappropraite for anyone to accuse others of being selfish if they are smart enough to realize they cannot do something.
Kinda comes under: "if others jumped over a cliff, would you do it too?!"
Some on the list are refusing to jump off that cliff, no matter how they are goaded into it by a few.
SO glad you see it, admit it, and take steps to avoid it, before it becomes a crisis!
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Holley, I just said something similar to my brother the other night. My parents live in their own house now and have little money, but this can't last forever. One of my brothers and I each go to their house constantly anymore, and I'm not sure how long we can keep it up. I absolutely DO NOT want to have my parents live with me and I WON'T. I'll look in the mirror any day and refuse to feel badly about my feelings, and I'll never do this to my kids. I've joked with my husband about us taking our own lives before we become dependent on the kids. Harsh, and I don't mean to be insulting to anyone, but that's the way I feel. The advice in the comments here are something that I'll store for myself, and I'm so glad you asked this question, Holley, because you're helping me too. You're not alone.
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Gail, I love your advice, above. Can you say a bit more about where you found a CARE manager for your father? I found a case manager for my husband (similar function) through the county disability services provider, a private agency contracted with the state to take care of brain injury survivors and children with developmental disabilities. But I know similar services are also available through community mental health, community health care, and bureau of aging in this state (New Hampshire). Thanks for a great answer. Holley, I hope these stories are giving you some hope and ideas about where to find help. I felt completely lost and overwhelmed until I started talking with people about needing help. I hit some dead ends: Visiting Nurses was completely useless, for example, but there were other resources that I had no idea existed. Thinking of you...
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Holley - A lot of good advice above. You are facing a difficult time and planning now is important not only for your mother and her appropriate care, but for you and your family. Bringing another person into your home, especially when it will require an enormous amount of time, for an unknown length of time, with a complex history of emotions, is a major consideration. What's best for your mother, you, and your family can only be determined by you. When my father could no longer live alone we hired caregivers so he could stay in his own home, which he insisted on. I was able to continue working and spend quality time visiting him. There was no question we loved each other, but we saw the world differently and it would have been stressful for both of us to always be together. He grew to love having his "companion" there for him; I loved that his "caregiver" fed, bathed, dressed, and chauffered him.
Engage the services of a care manager - CARE manager. It will cost a little to have an assesment, but they will determine the kind and amount of care she needs and will let you know of ALL of your options including funding sources. They can tell you what and how to care for her, they can take over her care or help you admit her to a care facility if that's appropriate, or they can offer partial services. Do an online search for care managers in your area.
Most important --- take care of your self! The stress on caregivers too often takes them out of the picture before the one who needs them goes.
I'm glad you are reaching out for support, keep it up.
Hugs to you.
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I, too, thought the "look in the mirror" comment was judgemental. Perhaps it wasn't meant that way. I thought the implication was that everyone should be willing to take in a parent but that may be my projection and not the writer's intention. Or it may indeed be what the writer meant. Everyone is entitled to an opinion on that topic. It can feel a bit harsh, though, when it is expressed in the context of an answer to someone who needs support.

The basic advice that several of us, including wandering, have given is to start planning and acting now so that when the time comes and the money has run out there will options in place.

And do understand, Holley, that if for whatever reason you do not wish to/cannot take mother into your home, you do not have to. My personal view is that for their own sake as well as for that of the parent children should see that their parents have good care. That does not mean they have to provide that care personally on a day-to-day basis. Sometimes it is really best if they do not try to.
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I think one of the biggest fears on this site can be to receive a post that feels non-supportive especially at a time when we all need all the support we can get. I do understand bandit's first response and personally, I agree with it as I felt wandering's response was judgemental. It's good we can agree to disagree. Think it's important to respond to questions, posts, etc. with sensitivity and thoughtfulness and consider how your answer might be interpreted by another.
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Thank you for your feedback, Bebe, you are absolutely right that where I am in my journey colors how I read WJ's answer. I apologize if I had a hair trigger and responded inappropriately. Thank you for your sensitive and thoughtful response.
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Bandit8it~ I know that most of us who are posting on these sites are experiencing a great deal of uneasiness and fear with regards to our aging love ones...and perhaps even of our own challenges that we may have to experience when that day arrives. Having gone through the care-giving experience myself...I know that it is difficult to give anyone advice as it seems, no two situations are identical. Plus our core/personal values are different. That of course most likely has a lot to do with how we view aging and how we react to the over-all situation..and our utlimate decisions.

As you know most of us on these sites are at various stages in dealing with the care-giving or loss of a senior loved one. As far as I know ..this is a forum where we are all suppose to be able to share our feelings..Am I not correct in thinking this?

I personally did not see WJ’s statement as judging but merely matter of fact.. Those of us who have already experienced the ups and downs of caregiving will often have a different view than those who have not yet had the experience. .I have a similar view on that myself as I almost did not take my mother...I was afraid that I could not handle it because of my childhood memories and not really knowing my mother. But it turned out to be one of the blessings of my life...I learned to love my mother and accept my mother for who she was....I realize that people cannot give what they do not have/know themselves. While challenging, it was a beautiful healing experience for both of us. Of course it was the most difficult thing I have ever done in my life. Now that she has passed from my sight, I feel a closeness to her that I had never experienced before being her care-giver. Because of my own experience I feel it is important for people to take time to look at the caregiving situation very closely and make their decision carefully....for regardless, we all at some point in our lives will face our conscious.. Of course that is an individual thing.

Holly, I feel for you …you have a lot of difficult decisions to make and I am sure that you will come up with all the right ones…those that will be best for all those involved. And then make sure to take care or you whatever your decision. . Indeed today there are a lot more choices than there were a couple of years ago. Depending upon the situation it is possible that mother will find the perfect place and make a lot of new friends and have the best time of her life. I know several people who just loved their lives ….once they got themselves acclimated to the changes. Getting old is really scary dear, so she will need your love and encouragement.

Social Services always has a lot of information to pass on plus try to visit all the nursing homes.. Some states require that each facilitiy have a certain number of units for lower income people…Which is really nice! I think the important thing is to be there for her…to let her know that you are keeping an eye out…and that she is safe and that she is loved…take her little trinkets, take her to lunch, etc. It can be very nice. Also they get better care when you show more interest. I took my mother from the nursing home because she was about 1000 miles away and not doing well there. If I could have lived close by I think it could have worked out beautifully even though she had alzheimer’s….

Please know Holly, that we are all here for you. I hope you did not have your feelings hurt as Bandit8it suggested. This is a nice group and each of us in our own way are just trying to reach out to you. Try to look over us if we say something not to your liking.

Perhaps you will share a little more with us? God bless you Holly..I am sending you lots of love and hugs.
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WanderingJ, if I had expressed my biggest fear on a caregiver's forum, and had been reprimanded to "look in the mirror", I would feel shamed and humiliated, which I don't believe is the intent of these boards at all. Even loving children can be fearful of the realities of caregiving for an elderly, depressed and disabled relative. That is not selfish, that is realistic, and it disturbs me that you would imply that Holley is somehow wrong to feel those feelings.
We do not know how easy or difficult mother was to live with, whether she was supportive or abusive, nurturing or addicted. All we know is that another caregiver has come to this board looking for support, and expressing her deepest fear. Holley, I am sorry that you got any negative feedback for doing so, and hope that you will continue to look for what you need here, and let the rest go. WJ, I hope that you can recognize that every situation is different, and some parents can make their children's lives a living hell. I say that as a psychotherapist with two decades of dealing with client PTSD and family dynamics under my belt. The whole family needs support and compassion. There is no room, and no need for judgment.
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Contact the Area office on Aging at 1-800-510-2020. wherever your are in the U.S. that number will get you to the Office on Aging in your area. That is the best place to start....As for your worrying about her running out of money and maybe having to live with you......Take a good look in your mirror, because someday that may happen to you and I hope someone doesn't say the same about you. Good luck to your mother sounds like she is the one that's going to need it The seniors in this country in most instances are fortunate to have agencies that can and will help them,
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Good advice above. Fear dissapates with knowledge. I was very suprised by the amount of free services and help available. Start asking - Doctors - Alzheimers Association, County etc. It varies by location.
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I second Jeanne's thought. Also, there are area agencies that can help you. Depending on the nature of your mother's disability, it might be the mental health agency, a center for aging, or disability services, but you can drop in and talk to them, and indicate that you would like to open services. Your mother would benefit from a case manager. Their role is the coordination of care and services. Once she is determined to be eligible (again, that will vary depending on what criteria they are using: disability, depression, age) it will open up access to a variety of services, all of which depends on your state. I recommend it because a case manager at any of these agencies is likely to be much more aware than you are of what services are available, how to apply, who the good contacts are at the local SSI/SSDI/DHHS offices.
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How close is she to running out of money? You might want to start looking into applying for Medicaid.

There is no requirement that she has to live with you.
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