Hi Everyone,
I am facing what may soon become a crisis and I’m not sure how to prepare or intervene. My Mother lives 800 miles away with my Father. She has dementia and does the absolute minimum in taking care of herself – doesn’t shower, eats bread and drinks milk only, is living in squalor in her bedroom with trash around that attracts mice (with attached neighbors now complaining about this). She has been in the hospital a couple times for this because she doesn’t take her other meds but they always discharge her for home health care. She never continues her meds after hospital stays. She refuses to see any doctor or home health care aid. She also never leaves the house and won’t get the vaccine. She sits on the sofa all day and prays or stares off into space. I have not found it possible to even have a conversation with her - she just goes into rants. Lastly, she has had hallucinations that made her think my wife and MIL are torturing me and our kids, so getting them to help or having her in my home are not an option. She would also never go into any facility voluntarily.
I’m at a loss for what to do. I think ideally we would buy a small house close by and have her stay there with my Dad so I can help when needed. However, I have no idea how to even get her in the car to come down here. Even if I do get her in a car, who knows what could happen when we stop for a bathroom break or something similar and then we could have a crisis in the middle of nowhere.
Any advice on how to approach this would be much much appreciated. This occupies my mind day and night unfortunately.
"I think ideally we would buy a small house close by and have her stay there with my Dad so I can help when needed." It's the "when needed" part you are grossly underestimating. Your desire to move them closer to you would have been a good plan before your mom fell into such a condition. Moving them into a different home close to you won't change a thing -- it will only cause you to orbit around them 24/7 and become burned out in no time. If your mom has dementia, there is no pill to cure her. She will only continue to decline and need more and more help, more than what you can give her. Unfortunately, your dad is ineffective and probably needs help as well.
Your dad is who is plugging up a solution (unintentionally or not): he is the one in the best position to get her help but he's afraid of her, or he is burnt out and doesn't know what his options are. He can:
- call APS and report her as a vulnerable adult. Social services will help him understand what can legally be done (assuming your mom has not created a PoA for herself). Eventually the county will gain guardianship for your mom and they will call all the shots for her care and finances. They will eventually get her into a care facility.
- Dad can make up a therapeutic fib to take her to the ER (or call 911 when she is hallucinating and she goes by ambulance) to get checked for a UTI and then request she be given a discrete cognitive exam. He then must not allow her to be discharged back to the home, he needs to say it would be an "unsafe discharge". The hospital social workers will apply a great deal of pressure for someone to come get her. If they do, this opportunity for the social workers to transition her directly into a temporary facility.
- You take time off from your life (approx 2 weeks) to go there and deal with it. Honestly, you don't make it sound like your dad is able or willing. Without anyone having PoA for your mom, there's not a lot of options. So, you will be going to do what your dad is not doing.
Using "therapeutic fibs" to get your mom help is not immoral or unethical. Getting your mom transitioned into a facility near you and Dad into IL living in the same community is the most realistic future plan. Remember: you will eventually have 2 people to care for. One can be overwhelming enough. All it will take is for your dad to have a health crisis, on top of your mom's issues. Please do not consider moving them into a home -- please read the many many posts under the topic of Burn Out on this forum by loving, well-meaning adult children who romanticized and grossly underestimated what caregiving entails. Don't be one of them. Go into it with your eyes wide open. It's always sad when someone has to make big decisions in a crisis. But this is due to how your parents managed the situation (or didn't). Now you are left to clean up the mess. There's only so much you can do. I had to deal with 2 in-laws in both cognitive and financial crisis at the same time. One was uncooperative. It took me 1-1/2 years or almost constant daily work to get them "settled" -- on top of working full time and raising 3 sons with my husband. May you have great wisdom and peace in your heart about helping them.
I am also wondering about your dad's mental health. He obviously is aware of the problem. Has he not said anything because he is in denial or does he also have some form of dementia? It is common for people with dementia to "cover up" symptoms for years before it gets to a point where it becomes impossible to conceal what is going on.
I also caution you about buying a house close to you so you can help. This will become a FULL TIME job. (It actually already is a full time job)
She needs caregivers 24/7/365. If your dad is well moving him to a house nearby would be fine while placing mom in a facility where she can get the care she needs would be ideal, unless she will accept caregivers.
How long has she been unwell?
Regarding your father, there are sort of twin possibilities to bear in mind: 1, that as you say he is being "economical with the truth" and trying to shield you; 2 that in fact he himself is completely at sea and hasn't the foggiest idea of what's happening to your mother or how to handle it. But there is also 3, I don't know whether this might have crossed your mind? - that he has known for many years of a condition that until now he and your mother have conspired successfully to conceal, and that he would like to continue to conceal only it's getting out of hand.
Do not attempt to move them 800 miles at this point. You need a lot more clarity about the state of things before you can make any kind of plan, and in any case does either of your parents particularly want to come and live near you?
Your dad can not back down on this. If your dad will not follow through with this then the option would be that you apply for Guardianship. At that point you would be in charge of making decisions for your mothers welfare.
Has your mom been seen a doctor that diagnosed dementia? If so what type?
And under no circumstances should you transport her. The safest option would be a medical transport.
You state “She would also never go into any facility voluntarily”. Almost EVERY ONE OF US ARE HERE because we believed this when we began to take care of our own Loved Ones. It is VERY UNLIKELY that anyone who has reached the level at which your mother appears to be functioning currently will have the cognitive capacity to accept ANY attempts you make to improve her circumstances. Those who LOVE HER NEED TO KNOW what residential care options are, as part of the decision making process towards getting her the help she needs.
Many of us here agree on “the basics”, and some things are more subject to discussion. In my personal opinion, when neighbors are concerned about vermin entering their homes, and your mother’s lifestyle has been identified as the cause, that in itself constitutes a “crisis”. Your mother’s health may be in jeopardy on that basis alone.
Many of us also react with attempting to come up with “quick fixes” that will make matters less difficult for both Mom AND those who love her. While loving and supportive, buying “a small house” nearer to you is actually not likely to address what is happening to your mother and how her circumstances can be managed for her, your father, and your family as a whole.
Dealing with dearly loved people who are no longer the people we knew them to be in the past throws all of us into a terrifying and unfixable state of change. We all need to look for solutions that may be the best of a set of not so comfortable actions, but the best that we can lovingly come up with.
Start with finding out who is legally responsible, and what her cognitive/neurological/psychiatric status actually is. DON’T BE EMBARRASSED if she resists assessment. TRAINED GERIATRIC SPECIALISTS understand the behavior of the clients whom they assess. They will NOT judge you or her other caregivers by her actions.
Remember always that the hardest decisions, made with love and respect, will one way or another, always be the best.
Our regret was we didn’t do it sooner, but he was very stubborn about moving. Sadly, she was dx with cancer soon after the move and although she went into remission (from stage four lung cancer!), she did pass away a few months later from an unrelated cause.
He lives with us now, but he is nowhere near where your MIL is. He still takes care of himself. When he is at that point, we decided it is time for either a live-in caregiver or a placement.
As for forcing her to do anything, I don’t know the ins and outs of that one, sorry. I did see this article about it, maybe helpful: https://www.agingcare.com/Articles/aging-parent-refuses-go-to-doctor-133384.htm
If you are thinking moving them here so you can care for her, that sounds is going to be difficult at this point and may run your ragged. But if you are thinking of moving them to be a support system for your dad while she is placed in a facility or has a live-in caregiver, that is different. Your dad being close by would provide him some emotional support and he can adjust while he is in good health and lucid.
Secondly, the crises is not here (yet). There is time to get some facts. Get some calm before the storm.
Thirdly, respond, not react is a saying for a reason. Buying a house close to you is an emotional reaction - heart in the right place, but don't do anything so drastic. A house cannot fix dementia.
Fourth, stay around. There are many here that have been in your shoes. (I too have the no shower Mother).
Fifth, I just have to ask? What about your Dad? What is he doing, how is he coping?