Dealing with dementia

January 28, 2009 6:59 PM

So, my dad has dementia. Where do I go from here?

He is starting to go from just being a bit paranoid to thinking people are in the house at night, people are trying to steal his money, that I am telling people he is "doing stuff" to my child. He also is "fixing" stuff around the house. He was left alone for a few hours and he painted much of my antique home with some primer he found in my basement (My parents live in my house and I have moved in to my partners house since we had a child together). He also has disappeared from the house walking out in the snow in very unsafe conditions.

Are their meds to take the edge off - make him less active? I hate to have him drugged up but it's better than in a home somewhere. My mom (who has never in my memory had a good relationship with him but they have stayed married) is at her wits end. She has never been his caretaker (I have always taken care of his Dr. appointments, meds, entertaining him etc).

He is keeping her up at night with crazy accusations, etc.

What is our next step? Resourses? I know a nursing home will someday very likely but I of course want to delay this as long as possible.

I now have little time to drive there 35 minutes away with a toddler with health issues and it is difficult spending time with him. He gets agitated because he wants too throw my kid up in the air (my dad is very unsteady on feet and almost blind) , sit him up on a counter without staying close, etc and I try to distract my dad and take kid out of unsafe situations my dad puts him in. Also it's become tougher and tougher to keep an eye on my Dad and a toddler running around. I have tried to have him at our house but he wants to always be making noise and going into the bedroom where my child is to wake him, encourages naughty behavior, etc.

posted by beccaj to Health & Fitness (14 answers total)

My great grandmother reached a similar condition when I was living with her for a time. Same kind of stuff, she'd "clean" the house with bleach or wood stain (or sour cream, once), thought my gram (her mother) was plotting to kill her, etc. They kept her there with no meds (she wouldn't take them and they couldn't make her) for waaaay too long until she wandered far enough into the woods that we had to call the police and fire department to help us find her. She was soaking wet, hypothermic, and almost two miles away when we finally did track her down.

At that point, they moved her to a home where she could be better monitored and kept on meds to chill her out. It sucks, but there wasn't much else to be done.

My point is, once you get to the wandering off/conspiracy theories/no sense of appropriate or safe behavior stages, you might want to start looking at some sort of assisted living.

I'm not a doctor nor any sort of professional, but this was my experience. I've got plenty more details if you want to compare notes.
posted by rollbiz at 7:09 PM on January 28, 2009

Response by poster: Oh and by the way - I seem to be the only person alarmed. Until my mom smashed the car last week he was still driving. I wanted to stop it but everyone else thinks he not that bad... I am afraid of him hurting himself or someone else.
posted by beccaj at 7:17 PM on January 28, 2009

Try to find a geriatric medicine specialist for him.

The 36 Hour Day is a good resource and is usually stocked in major book stores.
posted by neuron at 7:26 PM on January 28, 2009

Best answer: I contacted The Alheimer's Association when my mother was living with us and her dementia symptoms--wandering, endangering my children, angry outbursts, paranoia...became unmanageable. While my mother's dementia was Alzheimer's, the Alz. Assoc. deals with all forms of dementia. I was put in touch w/ local social services and it was a really amazing experience. All of the things I was worried about were everyday issues to the caseworker who came to assess my mother and talk about things with me. We tried a couple of stop-gap plans like having my mother attend a daycare program at the Senior Center...but she was just too combative to fit into the very low-key group there, so the caseworker helped me make peace with the decision to place her a care facility.

In her case, because of her wandering and endangering herself, she needed to be in a locked section of the facility...But the place we found was just wonderful for her...I know that sounds ridiculous...how can a locked ward in a Nursing Home be wonderful? But she was not even aware she was in a locked facility...there were doors she could go in and out of to a small outdoor "park" like area that was walled, and the actual door into the locked area didn't really look like a door, so unless she saw me get "buzzed" out, she didn't even know it was a door...and then minutes later she'd forgotten ; )...I visited regularly...once or twice a week, for a couple of hours, and walked in at various times of day without being announced so I could be sure she was being cared for kindly...She was. Any concerns I had were addressed and if she had a fall (happened a few times) I was called immediately. After the original pain, guilt and regrets, our whole family felt it was a good fit for her...One thing that I think was helpful for her and us was having her visit the facility for several hours twice, before she actually moved there. She stayed for lunch and music and activities in the afternoon. I was comforted when she commented coming home from a visit that the people there were, "people like me"...I think it was a relief for her not to have to try to keep up mentally with what was going on around her in a normal household. And it was clear she felt very safe there.

Feel free to email me if you think I can answer any other questions. I am so sorry you are going through this...it's very hard, painful, and clearly you have been very involved in your father's care for a long while. You are a wonderful son, with a very complex issue to deal with, that none us wants to have to face with/for a parent. ..I hope you get help from people who understand what you are up against...you'll be surprised to find your concerns are valid and taken seriously by those who are knowledgeable in this field.

Blessings to you and your family.
posted by mumstheword at 8:15 PM on January 28, 2009 [9 favorites]

Your mom is a resource. I realize I don't know your family and your situation beyond what you've described, but it seems like she could be doing more. At the very least, she could be watching your dad more so that you can take care of your toddler. And I'm sorry you're going through this.
posted by zinfandel at 8:20 PM on January 28, 2009

Best answer: "I know a nursing home will someday very likely but I of course want to delay this as long as possible."

I'm sorry that you have to deal with this, and that your father is ill. It's a terrible shock to have a parent become a dependent.

But that's what your dad is, maybe not all the time, but enough of the time that he needs supervision for his health and for the health of your mom.

I've been where you are, unfortunately, and if I could do one thing over, it would be to search for a good nursing home now. There's a great range in quality, and if you look now, you have a bit of breathing room to select one. If you wait, your dad will eventually do something that requires hospitalization, and then you will have a very short time to find a home for him.

I'll add one more thing that I hope will help you. In the case of my relatives who had dementia, even the ones who were fiercely independent (at least in attitude), they found it a great comfort to be in the structured, safe environment of a nursing home.

I thought it would be bad for them, that it was somehow selfish to make them someone else's primary responsibility, but it worked out well for them and for the entire family. We could still see them regularly, and know that they were safe, well fed, and not going to turn on a stove, forget about it, and hurt themselves.

I am sorry that you have to deal with this. Good luck, and feel free to MeMail me if you have more questions or want some advice on how to choose a good nursing home.
posted by zippy at 11:34 PM on January 28, 2009 [2 favorites]

There is such thing as adult daycare. It is the same concept as child daycare. Get the annoying person (be it a toddler or a senile old person) out of your hair so you can live your life for a few hours. My grandma did it for a while. Then we realized how much of an incredible burden she was putting on my poor grandfather. He was exhausted and no longer participated in his favorite activities due to her needs. And half the time she didn't really know who he was!

My mother and my grandfather got her into a full time facility. She was happy after she forgot she lived anywhere else (so 20 minutes?). My grandfather was able to really live it up these last ten years. He has a super active social life, he can leave the house whenever he wants and he has a really awesome girlfriend who actually loves him (compared with my grandmother, who evidently didn't). Before he was freed from my grandmother, his situation seemed to mirror that which your mother is going through (based on the evidence provided). Everyone seems to be suffering here: you, your mother, your father. Why make everyone miserable?
posted by nursegracer at 12:43 AM on January 29, 2009 [1 favorite]

My late father had dementia. I feel a lot of empathy for you. My father tended to have a lot of "sundowning," becoming more active and strange in the evenings and at night. At times he would leave the house in the evening saying that he had a medical appointment or something like that.

I'm especially concerned about this part of your post:
He also has disappeared from the house walking out in the snow in very unsafe conditions.

This is dangerous, even if it isn't snowy. Before my mother took his keys away, my father used to get lost driving and had a few accidents. My mother had started to act as his caregiver by then, but had some difficulty keeping him out of his medications, taking extra meds, etc. However, she was in a certain amount of denial and it took a crisis, a series of falls, for her to acknowledge his illness fully.

Given that you are asking about meds here, I suspect that his health issues may not yet have been explored with a doctor. Please take him to the doctor for an evaluation of his condition, and make sure that you explain to the doctor what you have told us here.

Finally, this sort of thing can be terribly hard to cope with. Please take good care of yourself.
posted by Robert Angelo at 7:42 AM on January 29, 2009

DO NOT attempt to sedate your father. Not with benadryl, not with something from the back of the cabinet, nothing. I understand that this is hard to deal with, but sedation, which shouldn't be attempted by anyone without a medical degree anyway, is particularly tricky in the elderly and/or people suffering with dementia, and is more likely to increase his confusion and agitation than it is to have the effect that you're looking for. This is beside the fact that it can be extremely dangerous to his health if he's not under proper (medical) supervision.

Essentially, it sounds like you have two options: some kind of care facility, either a residential place or a day facility like nursegracer describes; or home health. For my family, residential care is really the way to go. A lot of people have a really visceral reaction to "putting Grampa in a home," but a good care facility is often the best way to go, particularly if the person in question is starting to wander or be unable to keep himself out of danger.

I'm sorry you're going through this...dementia is an ugly, ugly thing.
posted by LittleMissCranky at 7:45 AM on January 29, 2009

Response by poster: HI- thank you all for the responses. I did mean drugs though a doctor, not anything else. I have called his doctor (crying) saying we need to do something but they were a bit resistant and said that they can't discuss things with me because of privacy. I did get them to agree to an evaluation but it has been a couple weeks and they just haven't called back to let me know when. I guess he has his good moments and I guess the last few with the doctor have been pretty good and thats why they haven't been very responsive.
posted by beccaj at 8:49 AM on January 29, 2009

Nthing the Alzheimer's Association. A good Geriatric Case Manager can also be a great resource in finding what's nearby for help, hiring assistance, finding support, and placement if and when needed.
posted by dog food sugar at 9:06 AM on January 29, 2009

You need a new doctor....
posted by HuronBob at 9:09 AM on January 29, 2009 [1 favorite]

Your county/state may provide social workers to hook you up with resources like adult day care, cleaning/food services, assisted living arrangements, or geriatric specialists. A geriatric specialist may be better able to suggest medication or other things to keep him safe and you sane. We have a great social worker in MN with my grandmother, but not sure what there is in MA.

There is a range of care available -- not all nursing homes are like hospitals and can provide graduated care as he needs it. The good ones may have waiting lists, so while he's living with you, it's a good idea to sort out where he might go and how it will work financially so you don't have your back against the wall when there's a crisis. You're doing a good thing -- maybe there's someone out there to help you do it.
posted by *s at 9:45 AM on January 29, 2009

Best answer: beccaj, my father has just been diagnosed with frontotemporal dementia. I don't know enough about your father but it sounds like he does have a behavioral variant of frontotemporal. These dementias are quite different from Alzheimer's in the early stages. FTD in particular has an average age of diagnosis around 55, rather than past 65 for Alzheimer's. FTD sufferers lack insight into their own condition (my father denies that he has anything wrong with him) and lack empathy into others' concerns and needs (such as your child's safety). The brain is literally atrophying in the centers that control social interaction and communication.

There are few books about FTD compared with the wealth of material on Alzheimer's. This is the best one: What If It's Not Alzheimer's?[amazon] It has individual chapters on everything from behavior to feeding to end-of-life planning, written by medical professionals.

You need a geriatric case manager or another resource who can guide you through this difficult, challenging time. It's probably too late to secure long-term-care insurance, so financial issues will be extremely important. You mother may have to "spend down" assets so your father will be eligible for supported care.

Immediate concerns are that you need a healthcare power of attorney (and financial/legal would be good as well, because what happens if your mom dies or gets sick?). The doctor may not be ready to sign off on your father's competency, but you need to get a diagnosis going, and your dad may resist or thwart any voluntary handover. At some point his wandering may result in a legal problem such as trespassing or worse. (This has already happened with my dad.) Get him a medical bracelet like the Safe Return so that cops or paramedics can quickly learn what they're dealing with. Make sure you have a cell phone and a car.

Adult day care is a problem for FTD because they are aggressive, whereas Alzheimer's patients are older and more passive (as a rule of thumb). You may need to try more than one program. You and your mom will need respite care regardless. As long as your dad can perform most "activities of daily living" (bathing, dressing, eating, etc.) it will be difficult to get insurance (that you already have, if you do) to pay for home health aides or assisted living care. You may have a period of doing this stuff in shifts.

Go back to the doctor and insist on a referral for a neurological examination to rule out things like a brain tumor, head injury, thyroid imbalance, etc. There will be MRIs and maybe later a PET scan. A diagnosis may require a baseline evaluation of cognitive ability (a couple hours of paper tests) as well as one several months later showing a decline. Your doctor may not be familiar with FTD, whereas a neuropsychologist and neurologist will have the familiarity to know better.

FTD is not really treatable. It is fatal. Your father may have entered a stage of more rapid decline (mine has). Drugs can be used to treat behaviors; we had to put my dad on an anti-psychotic for his increasing aggression. But they won't slow the disease itself.

UCSF and Mayo have some videos on YouTube. The line from one of them that sticks in my mind is "It's like a bomb hit our family." FTD often strikes when people are still working, with kids in school, at the height of a career, and before a lot of retirement/end-of-life planning has been done.

Good luck and MeFiMail me if you have questions.
posted by dhartung at 10:11 AM on January 29, 2009 [6 favorites]