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I am curious if anyone else has had to face this issue and how you deal with it or have a life?
My mother has been diagnosed with dementia or early onset Alzheimer's. She is 60. I am about half her age and am trying desperately to be there for her while having a life of my own.

I have recognized that she needs a companion because she lives alone and constantly complains of being lonely. Eventually this companion will need to be full time, to make sure she eats right and takes her meds. I live in another country and come home as often as I can. However, I am thinking I need to move closer to her though I cannot live with her.

Why? I feel myself falling apart under the burden of trying to organize it all - make her appointments, keep them with her, cook, keep her company. I love her, but I feel like it would send me insane.

The other more serious thing is that my mom and I have an enmeshed relationship (parentification, spousification). Before her memory loss even. Even in my 20's I was still sleeping in the same bed with her when I would visit. She still expects me to. I remember going out with my friends and feeling guilty about doing so. Even now, when we spend the whole day together, she still makes me feel badly for going out with friends in the evening. I feel like her vulnerable state has only increased her dependency and I want to peel her off.

I am so scared of never being able to have a romantic relationship I can focus on and also feeling burnt out by the time I have children,as I feel like I have an adult child. Except this adult child tries to parent me like a 12 year old by freaking out if I come home at 9 thirty, but she needs attention and assistance.

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Hello,
Thank you for your responses. I have been reading them but have not had the energy to reply.
Re where we are located, it is in the Caribbean. Not in the US, so there is nothing available through Medicaid.
I got some helpful ideas here such as adult day care, the Power of Attorney and warning that her dependency might increase with time. In my case there is no adult day care, so I would have to have some activity that she goes to every day and is closely monitored and brought back home safely.

I have thought about before that maybe she is scared. But I am only starting now to understand how as you feel you are losing control you want close to you people who you can trust. She really relaxes when I am around because she knows I wont steal from here and that I am responsible. She even told a health practitioner this as the person asked her some questions: "When she is around, I relax. I turn everything over to her. If I could turn over my life, I would."
That is good for her, but it is heavy when someone would rather just turn over their life to you. I think that is part clinginess, part depression, part old age tiredness (time for the children to do the work type thoughts).

I think I have to learn to balance this understanding of her wanting someone she can trust around because she knows she is vulnerable with the latent resentment I have had since teenage for feeling like I am expected to be her friend and/or spouse - being with her often, not hanging out too late with my friends, her acting up a little when I want to go do something with a partner instead of spend it with her.

An example is me calling her the other day after leaving her after about 5 weeks of visiting. I said hi. She cursed me about leaving. About how people told her this day would come when we would grow up and move away and told her that she should try and get a husband. She remembers some boyfriend she had when I was about 8 who I did not like and one day when I ran away from them. I was 8. I dont even remember. And she tells the story with a bitterness like "YOU!", as if it is my fault she is alone. I think that that is part fright about dementia and part the way she has always been/ how she and my family think. It is like it is expected that children should grow up but stay living with their parents and being their company and partners for companionship. There seems to be not one thought that you might want a life of your own.

Since I dont have Medicaid, I am trying to see how I can plan for live in care, as well as move her closer to where we have more relatives and she has childhood friends (building a house there would be a gigantic undertaking but I dont think she can live where she lives now if this progresses - it is not close enough to social support for her).

It is so sad to watch her like this. It feels painful. It is like you are watching someone with a young looking body die brain first, though she engages in discussions about current events in a vibrant way. In her case, I think she would be dying having not lived much as of a life as she has had anxieties, depression and had to work very hard all her life to make a way for me and my sibling.

I wont go on. But thanks.
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Read "The 36-hour Day". Chapter 12 talks about how caring for a person with dementia affects you. Yes, it is like trying to live your life and hers at the same time, and it is exhausting. I have to think it would be harder long distance and you are unable to determine if it's working when you can't observe on a daily basis. On the other hand, it's easier to ignore the problem from a distance. You need to have a support network of people you can count on. I agree with the person who mentioned how frightening this is for your mother. Imagine not being able to trust your own judgement or understand what people are trying to explain to you. Also keep in mind the constant forgetfulness of any conversations you may have had - such as explaining to your mother that you are only going out for a few hours. I field several calls a day from my father on the same topics. Adult day care may be a blessing if you can afford it, as they have activities.
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Mary, it might be a good idea to review things. Yes, Medicaid exempts the home as an asset as long as an intention to return is expressed, however unrealistic. But, you may not be able to keep the home after her death due to estate recovery laws. Medicaid can no longer afford to be in the business of preserving inheritances. There are typically a few exceptions for people who have lived in the home and provided full time care, and for spouses as long as they live in the home. It sounds like you are reaching a different understanding of what is happening to your aunt, and you can as POA use her resources to obtain a follow up consultation with an eldercare attorney. Use the same one if they were good, or pick one is is most knowledgeable about Texas law and Medicaid/estate recovery, etc. - you can often tell from their websites. Probably just go to the attorney by yourself this time.
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This really sucks. I feel I may be in the same situation, and I need to tell my child, it's okay, do not feel guilty...I may be in your mom's shoes before too long.....I have a plan.....if I remember when I get that bad....My parents moved away from their parents....gosh.....
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Explain Durable Power of Attorney and Irrevocable Trust Fund (or is that the correct name?)

Many people who are on Medicaid benefits to pay for nursing home costs want to pass their home to their children, or a close relative. A home is most likely the single largest asset they have.

There is a way to protect this property when a death occurs so the state can't seek money on the property.

Please explain how this is done, using an experienced Elder Law attorney.

My aunt is Medicaid, living in a nursing home, and owns her home which is on three acres. (Texas) I am POA and her property taxes are frozen since she is disabled and almost 99 years old. How long does this exemption last? As long as she keeps saying she plans to return to her home when she gets better? She won't get better, and that is obvious.
I took her to an Elder Law Attorney, but it has been over three years ago. Do I need to review her case with him again since it has been several years, or do I need to rest assured everything has been done. If I go see him again I guess I will be charged for the time spent. marymember
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I think it's important to be careful with the tough love, ordering around type of advice. How much good does it do if it alienates the original poster? No reply for five days. She is living with a deeply painful psychological situation - I know because I share aspects of it. OP if you are still around, I would advise to find a geriatric care manager even if you have to pay them out of your own pocket - you need professional buffers between you and your mother. Even for people with parents who were non-needy and independent during their healthy years, holding healthy boundaries is very hard once their needs skyrocket. Hard to know how to love them and not drown especially when you barely tread water during their healthy years. Please take care - you matter too.
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Suggestion: could we mention what country we r from or parent is located before we start a thread. Would make it easier to give the correct info from someone who lives in that country. If from England or Canada, for example, they have different health options than we do Here in the US.
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Excellent advice here, particularly from TerryJack1. Mother recently had a health care situation that has left her with just a bit of memory loss and going on five weeks of hospitalization. I can see she is so frustrating by not being able to recall certain words. She must have asked one day, "What are we doing now?" I wrote the steps down for her, 1, 2, 3 what we are doing: 1) Eat your food at every meal. 2) Do you ReHab 3) Go to my sister's house until you are stronger. She reads this over and over and it has helped. I can't say enough about enlisting the help of professionals and the advice of others.

Some days it is tiring, but you must protect your own physical/mental health. Don't hesitate to reach out to her friends, church members to ask if they can assist you with one specific task. My mother lives in another state, so when I left, I asked each of her friends to please call her on certain days and to visit once a week until I return.

When she goes to rehab, I must encourage her to interact with others since she has a tendency to just watch t.v. all day. I call her twice a day, tell her I love her and encourage her.

I don't want to sound cruel but I had my first child at 19, a grandchild (who still lives with us) at 49, and I am the oldest daughter. When my sister and I were standing in the emergency room of the hospital for my mom, the doctor asked if she had a medical POA. She did not. He then said, "Who's the oldest? Ok, so we will call you with any medical decisions." And so it goes.

I'm 62, a few health issues of my own and want to balance my life, finally.
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Dementia is a terrible disease, it robs us of our loved ones. I'd check into an adult medical day care; it's a great place, she can get out of the house, socialize, participate in some activities and eat lunch. You can contact the area agency on aging and as about in home services for her as well. You can contact the Alzheimer's Association, they can give you info on dementia and tips on how to deal with various behaviors. Good luck
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The advice to visit every single day may be a bit much depending upon how the care receiver reacts. I wa extremely low contact for my own sanity and discovered that even once a week, then once a month was too much. My husband visited once a week and so did my sister, but she was still impossible to deal with. When the staff would roll their eyes at her incessant demands, I knew I had made the right choice for me.
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So far we must be lucky, the aids caring for our father in a NH are very nice, they love to chat with him (when they can),even though they may be far fetched stories. My mother visits about every other day at different times, I visit as often as I can, sometimes thats only 2 or 3 times a week but I have never seen any abuse (not saying that it doesn't happen in some homes). So we are very fortunate. But yes, making things easy for your loved one until they can no longer care for themselves is good, and also for you. But even signs at some point may not even make sense to them or understand them.
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If it Mom can afford round the clock homecare than she probably can afford an AL facility. I think since ur out of the country, a care facility is it best bet. They will set up appointments and make sure she gets there. They have to keep you informed. See if someone near her will stop in to check on her for u. Then visit when u are able.

You must think this thru. Your young and need to think of your future. These years are your earning years. Good jobs are hard to get as you get older. Your Mom will only get worse and end up in a facility anyway. I agree, check out SSD. If a widow, she can get SS at 60. SSD will give her Medicare.
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I would like to point out once you get her in a nursing home - visit often. Or have someone visit often. Nursing homes are not great - the workers don't love your mom--they are just doing their job. She will also be vulnerable to NEGLECT and ABUSE. The only way to combat this is very very very frequent visits and include INSPECTION of skin for breakdown or unusual marks. If you visit often, the staff will treat her better because they KNOW you are watching them. If you have no family around where she is, get her in a facility near where you live so you can visit every single day. The stress does **NOT** end with a nursing home. Let me assure you of that.
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The same thing is going on with my Dad. He is so clingy and domineering, it is hard for my stepmother and I to get anything done. His Dr. has him on anti anxiety meds and that is helping. He is also on an anti-depressant, which has helped his OCD. This is a scary time for him and we are helping him through it by getting the correct medications to help him feel safe and happy. At this point, that is all we can hope to do. With severe memory loss, the quality of life is severely impacted, so we must do our best. Good luck to you!
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I found from experience and wish I would have known before some of the things below to help my care receiver maintain some semblance of independence (even if it was just in their mind) while I attempted to maintain some semblance of having my own life while not feeling guilty and also knowing she was being made as safe and comfortable as possible.
I made a checklists to follow for the care of my care-receiver and put it in a folder. It ended up being not only a good resource to ensure I did not forget something...but for home health care workers to follow. I wish I would have known to do pretty much the following for someone as they cognitively decline:
1) Have the care receiver continue to do as much as they can on their own with support from family and a visiting caregiver. Do they like to go to the local senior center? Take them after they cannot drive anymore. Line up their meals and label with large print. Put signs around to help them navigate in their house,etc,
2) Once the senior center begins to let you know your loved one has declined too much for the concern of safety there, look to Adult Day Care during the day and in home care during portions of the evening and weekends. Focus on having someone present to assist for meal prep and during the meals.
3) Start looking and touring residential facilities to care for your loved one once she is no longer safe to be at home.When she is moved into one, you will continue to be very involved with her care and the issues of the continual cognitive decline.
During the above steps, you will also be lining up the legal and financial aspects...as well as continue to team and gain more and more members for what I called "team grandma". It truly takes a village.
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speak with a doctor or someone knowledgable in this field and find out what you can do now to make things a little easier, but in time you should find a GOOD Elder attorney to handle assets she has to protect them and to help you thru the process of getting Medicaid for your mom. Good luck.
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First, you're in a twist about something that hasn't yet happened. You're not tracking her meds...you're not cooking for her...tracking her appointments. You aren't being suffocated by her clinginess. You don't even live in the same country. You're worried about what-ifs.

You need a plan. If you get the makings of a plan together, you'll get more comfortable. Here's a place to start. If you don't have a healthcare and durable power of attorney for your mom, get them. If you don't know your mom's financial situation...how much money she had...where she has it...what benefits she may be entitled to...etc., etc., find out. Take an inventory. Is she eligible got social security disability? If so, make arrangements for her to apply.

I'm one of those people who believes that an adult child needs to step up. That's life.if you are an only child, that responsibility falls firmly on your shoulders. UNLESS your relationship with your mom is soooo toxic that you're better off living ad if she were dead. That's me. Others feel differently.

Yet. That DOESN'T mean you move in with her and vow to care or her for the rest of her life. In today's world, that could be the next 25 years. I've assumed she lives in The States. There are provisions for people in her condition. No one wants to see a beloved parent have to avail themselves of these, but sometimes there is no other choice.

I wish you well. And hope your oh-so young 60-year-old mom has an angel or two on her shoulder.
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Whoever cetude is gave you very sound advice. I live with my Mother and while she is not as clingy as yours it is very very difficult to keep my sanity and a balanced life while caring for her. Please do not give up your life and go live with her. You WILL lose your life and you may never get it back. And you will not really be helping her. I agree that getting her on Medicaid and into an assisted living facility or a nursing home is the best solution. Please do not sacrifice your life.
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60 years old is very young, and I'm sorry about your situation. Generally speaking, the younger it hits people, the faster the decline. You mother is NOT being "clingly" as you put it, but is frightened. Early onset means she knows she is losing her memory, and it's very frightening. Eventually this fear will go away as she deteriorates. Ultimately you will end up having to put her in a nursing home--since as you say, you cannot have her live with you; if she is on Medicaid this is no problem. Getting her on Medicaid IS a problem if she has assets, because they take it all, and anything to do with the government is involved. In my opinion, if she has been diagnosed with the disease, she already should *NOT* be living alone, and may be doing foolish things with what she has. She is also vulnerable to con artists. She WILL eventually wander and start walking and walking...until she collapses, or get hurt. I hate to sound this way but that's the way it is. YOU or SOMEONE ELSE MUST LIVE WITH HER -- OR get her in an assisted living facility. This will eventually turn into a nursing home. There is no other choice.
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My Dad had Alzheimers disease and I noticed he became very dependent on Mom. Mom now has the same and I've noticed she has become very dependent on me. Both of my folks were very independent people before this disease. I am guessing, but I think as they loose their memory it is just natural for them to become more dependent on someone they know and trust. In your case it sounds like your Mom has always been a very dependent person and that will, in my guess, only become worse. You'll need to think ahead on how to work this out as this disease can last for many long years and things don't get any easier. The more dependent they become the less free you become.
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