2nd Parent is Sick

Brooklyn74

I now have two parents with dementia. 

My father has been suffering for quiet some time now, and no longer walks or talks. I sit with him daily just looking at him, trying to memorize every sound he makes and what his face looks and feels like. I lay my head on his chest to listen to his heart beat. I miss his daily calls and his laugh. I still have so many questions to ask him.

My mother is now suffering from what looks like dementia. She however, continues to deny it and refuses to get help. Her life is starting to spiral, and so I step in and help manage the finances and the everything. I am struggling to understand her real estate and investments. I try and bring her to doctors, to at least get a name behind what's happening but she refuses to go and blames me for making something from nothing. She tells me she is fine, and of course I can't force her to go. I get mad and angry and yell and I feel horrible because it's not her fault.

But, I don't know what else to do anymore. I am exhausted mentally, physically, spiritually. My life is starting to suffer, I am falling behind in work, I don't clean my home, I am falling behind in taking care of my father. And while it feels selfish, I am falling behind in my life, I would love to have children, but can't even find time to leave the house. 

I have no other family and my friends are supportive via text messaging but that doesn't really help me get anything done. It is just me trying to care for me and both my parents, do three sets of taxes, three sets of bills. I'm not sure how much longer I can tread water, I can already feel myself drowning. I am so so tired. Being alone is horrible. 

M1

I am so sorry and I understand your isolation.  Do you have POA for both of them?  I hope so.  Perhaps getting them into a memory care situation--together or separately--would be your best bet for salvaging your own life.  You simply cannot do this by yourself nor should you be expected to.  Remember, your life is just as important as theirs.  Hang in there.  Remember to that there is a 24/7 hotline--don't know if they can help but they might help you think through some options.  1-800-272-3900

PS it sounds like your mom certainly has anosognosia.  Can't realize that she's ill.

Ed1937

I agree with every single word that M1 wrote. The only thing I can add is that if you feel like you really need her to see a doctor, there are many conditions that can mimic symptoms of dementia. If you explained that to her, she might possibly be willing to see a doctor. But if she truly does have anosognosia, she will likely refuse to go because as far as she's concerned, there is nothing wrong. But here's a link that you might want to read. https://www.agingcare.com/articles/reversible-conditions-that-can-be-mistaken-for-dementia-476370.htm  

You are a human being, and you need a life too. This disease is willing to take all three of you down if you let it. Just use your head when making decisions, not your heart. I'm sorry it is so difficult.

Quilting brings calm

Three sets of taxes and bills hints that your parents are divorced.  I don’t know how you do it because my parents are married and it’s all I can do to deal with two sets of taxes, bills,  doctors etc etc/ plus my spouse and adult children. 

My parents are both still in the mild dementia stage, but they are both in their 80s with health and mobility issues. They are in assisted living.  That’s the only thing that allows me to survive this. I recommend that you put your dad in memory care and talk your mom into assisted living.      She doesn’t need a diagnosis to go there.  Pick one that has a nurse on staff five days a week.  They help tremendously.  If you do that, you can at least get some breathing room in your life. Otherwise the stress could kill you while they are still alive.   

No one person can take care of multiple ill, needy, childlike people. Around the clock staff is needed for that. 

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harshedbuzz

Are they divorced?

Managing one additional household as a relatively young single person would be near impossible, taking on a second with a PWD who has anosognosia is Olympic-level caregiving.

Do you have a POA for dad? It might make sense for him to go into a memory care community which would free you up to just be his daughter and love on him. 

You may have to create a ruse to get mom to be diagnosed-- telling her her insurance requires it,  to obtain a refill for a medication she already takes or bringing her along for an appointment "for you" <wink, wink>. Another option is to ask for a neurology consult if she's in the ER for something else. It's best to have a bulleted list of concerns and behaviors you're seeing to slip to the doctor ahead of time.

The nuclear option, assuming she's as impaired as you describe, would be to see a certified elder law attorney about obtaining guardianship which would likely force her into being evaluated by a neuropsych. If you prevail, costs would be paid by her and you would be able to act on her behalf.

HB

Brooklyn74

I want to thank everyone for their amazing kindness and advice. Life has been so incredibly hard.

Yes, my parents are divorced and my mother lives a few hours away. My father has 24/7 care so they take care of his personal needs, and I am tasked with anything financial. My mother would never go into assisted living. I am contemplating renting a 2 bedroom in NYC, and asking her to move in with me. I think she would be better having a world in walking distance, and things she loves all around her, she can build structure. Where she lives now, she has to drive everywhere and rarely leaves the house. NYC is our home, so she is familiar with it. 

Thank you for the link to other disorders that may mimic dementia. I wish it was almost anything else. So far, her blood work and urine test came back perfect, and the cat scan didn't show anything. I don't really know where or when this happened. She's almost 80, but it feels like it came out of no where. I'm still trying to find a neurologist. We went to one and she was horrible. Just tested my mother quickly and talked at her explaining how Alzheimers comes about. Why would anyone scare a patient like that. Even if it was dementia, you're supposed to talk to someone with kindness, it's like the doctor was totally disconnected from how a patient would take a diagnosis like that. So, I'm looking for a better doctor, but her insurance is a pain. 

I am trying to reach out to people to help me. Real Estate lawyers etc, but it's hard to reach someone to trust and who has the time to speak with me. I'm also working with a bookkeeper but they ask me to scan them everything they need so I spend hours going through documents and trying to get them the information, all of which I haven't been able to do yet because I'm still fixing the problems I found, like the unpaid bills etc. I'm praying I'll have the time soon. For now I'm trying to prioritize like 2021 and 2022 Taxes and then information for the bookkeeper and then the documents the loan people need. I can't start hiring help if I don't understand what money there is yet.

What I would give to have someone standing besides me, helping or even just holding my hand. Everyone I know has someone. I survive by reaching out on this site, therapy sessions and talking to 2 friends (I don't want to tell anyone else)... but while this helps, when I close down the technology, I'm alone, and it's a horrible feeling. I'm not sure when, but one day I woke up and had no family, it's just me and my parents, and now I'm left alone to hold a bag of memories. 

Phoenix1966

I’m so sorry you’re going through all this. Your parents are lucky to have you so invested in their lives/care.

Like Ed1937 mentioned, your mother may have anosognosia, which means she no longer has the ability to recognize neurological deficits. It is not denial. 

If you decide to move your mother in with you(and she does have some form of dementia), the move itself will probably set her back somewhat. You will have to watch her all the time. If you don’t work from home, that will be a challenge and if you do work from home, it might not be any better. 

Something you said stood out to me about moving her: she can build structure

If she has dementia, I doubt that will be possible. People who suffer from dementia tend to do better with structure, which is why a memory care facility(like M1 and others mentioned) can be a blessing. But dementia sufferers, depending on the severity, cannot fashion that structure for themselves. They need someone else to do so and reinforce it, often daily or hourly. You said she rarely ventures outside her home. That may be because leaving home is too overwhelming for her at this point. And if she has dementia, she will eventually need to have the car keys taken away from her. 

I also suggest you go see a certified elder attorney(often first consultations/visits are free). They can help with estate planning, protecting assets if Medicaid is eventually needed and can explain the process of obtaining guardianship if you think your mother will not name someone a legal and medical POA. They may even offer suggestions on how to get her to come in with you to see them. 

TraciW153

So sorry. I can't. imagine doing 3 sets of stuff. Two sets is tough.

I don't have any suggestions or advice, maybe some day. For now, know you are being heard. You aren't the only one who gets angry and yells. I've never been a yeller but now seems to be my time.

One little advicey thing - try not to put your health aside. I kept putting off my "little" tooth infection and by the time I finally made time to go to the dentist, it was roaring its way through my jaw bone. Then I felt guilty after surgery because I wanted to lie around a few days.

I wish I could lighten your load. I'm sure your precious dad is remembering your laugh somewhere inside.

Anonymousjpl123

I am so sorry you are going through all of this. I know how hard it can be to shoulder this alone.  That said, I have not one but several friend who, like me, were single when having to take care of an aging parent. It is awful but trust me you will grow so much through this, if you can hold on and prioritize self care long enough to get through it.

I like the idea of you getting a bookkeeper to help. I just moved my mom to be in Philadelphia close to me and it’s a godsend having her near so much in walking distance. She never goes anywhere but just knowing she can I think makes it better.

Also, if you can, please do try to make sure you find time for yourself. I haven’t done it super well but finally feeling like my moms care is set enough to do it. You are just now starting to face this and it’s the very worst part but trust me you can do it. Just be sure to never feel guilty for taking time for yourself. And remember this will get better, you are just in the thick of getting everything situated now. 

Brooklyn74

I wanted to let everyone know that I read and re-read your responses. Thank you for your help, understanding and kindness. 

I had to get an elder care lawyer for my father, so I'm sadly already versed in medicare, medicaid, and all things elder care. Issue is, my mother won't make it so easy. She won't give me her car keys without a massive fight, and I can't afford a lawyer. I have like $1K to my name and I live paycheck to paycheck. I could not have paid for my father's lawyer without my mother. I understand the need for structure. I was hoping that bringing her back to NYC would make it easier as she spent her entire life here, and knows the City. She has been where she is now less than 10 years. And, she has to drive where she is, In the City she can walk everywhere. I am still taking it day by day and trying to figure it all out. I will spend my weekend paying bills and trying to get her life back on track. Still unsure of how to scan the 1000 things I need to scan to the bookkeeper that lives in NJ. My printer/scanner keeps breaking. My file cabinet broke and sits on my floor in 2 pieces and my room is full of file folders now. 

I'm unsure of how to put myself first, I don't even know what I want or who I am anymore. I want a family, and I can't get anything stuck at home alone. But I am so tired, I don't want to leave the house. I really miss my parents. I've never felt this so alone and scared in my entire life. What I would give for a husband to hold my hand, or a sibling to share stories with. 

Iris L.

Hello Brooklyn.  I too am alone and I do know how difficult it is to function and to get out of bed to face the world each day.  The difference is that I have been doing this for years.  I can give you a few suggestions.

You mention your mom having structure where she live.  If she has dementia, she will soon not be driving or taking long walks.  It is most important for YOU to have structure in your life.  This is how you deal with the aloneness.  You have to bring in knowledgeable professionals to advise and to carry out tasks. You already have a bookkeeper and an elder lawyer, that's great. 

Caregiving for PWDs requires steps that the general public may not be familiar with, certainly not people your age.  You will have to manage complicated finances.  Your mom has real-estate.  The general plan is usually to manage the estate so as to provide for long term care, whether in the home with 24/7 paid caregivers or in a Memory Care facility.  The time for this care may not be right now, but the time will come soon enough.  It is your job to prepare the finances for this.  Whether you sell all the properties and investments or do something else will be something to decide with your knowledgeable and trustworthy advisors.

                                                                                                                                                                                                                                                                                                

If your mom has dementia, she likely has anosognosia.  This means she is unaware of having dementia or any changes; to her, she is absolutely fine.  This means she will not be able to give you reliable and rational guidance on how to manage the investments and finances, or even where she will live.  If you were to move her in with you into an expensive NYC 2 bdr apt, you will have to stay home with her and not go out to work.  Could you afford this?  You are already stressed, you will be more stressed cooped up 24/7 with a PWD.

My advise to you is to stay close to the members on this message board, because they know much and can give good suggestions.  Make use of the Care Consultant at the Helpline, I have called them several times with good results.  You are not alone because the members here are with you!

(((((  Brooklyn  )))))  hugs

Iris

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harshedbuzz

Brooklyn-

I am sorry you are tackling this double whammy all on your own and at a relatively young age. That must be so terribly difficult especially given your mom's anosognosia and all the mental energy working around such a presentation requires. It sounds like you are in a place where you are trying to build your own life and future while balancing the needs of 2 divorced parents. 

I would advise you to obtain guardianship of mom. When my aunt needed to do this, the monies for the legal fees were paid by the aunt with dementia's assets. Then I would look to a MCF for mom near you. As a young person building a career, future family and secure retirement for yourself is job one once you get her settled. You need to come first which means you may need to delegate some of the "stuff" in her life. I would look for a MCF near you and move her in as soon as you have guardianship; this will allow you to oversee those who provide care and handle the logistics of her assets and have a life of your own. It would be hard to move her in with you and provide a level of structure and safety. Even if she'd been a denizen of NYC her entire life, she and the city have morphed. She would not be safe free-ranging in the city (or anywhere else for that matter). Another option would be to hire a geriatric care manager to oversee her care where she is now if it's not too far and costs are significantly more reasonable. It might make sense if she has real estate holding to hire someone to oversee that piece; it'll cost her but free your up. 

HB

PS. IME siblings tend to be over-rated in this situation. Nine times out of 10, they are not helpful. They tend to fall into a couple of categories-- they long-distance sib who doesn't believe the situation is dire and fights the CGsib's decisions, the local sibs who ghost the situation often using careers, kids, and marriages as an excuse for being too busy, the fragile sib who "can't bear to see mom like this", the sib who wants to preserve assets for an inheritance at the expense of mom's safety and CGsib's health, career and social life.