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.
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.
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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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.
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.
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.
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.