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I'm looking for suggestions for my dad. He has early-onset Alzheimer's. He's reached a stage where he walks around the house constantly, checking the doors to try to get out. He's wearing disposable briefs, but he pulls them down and urinates anywhere he happens to be. This has gotten to be really difficult to deal with. For example, last week we were celebrating a birthday at my house and he peed in my kitchen cupboard where I store pans.
He's been checked for a UTI already. The bathroom problems used to happen only at night but now they happen all the time. He's got a liquid restriction of 2 liters a day for other health problems, but he must be drinking out of faucets when my mom isn't looking.
My sister has already said that my parents can't visit her house anymore because of the urine problem. I don't want to treat my parents like that, because my mom already feels bad because she can't take my dad anywhere anymore, but the only way I can prevent accidents is to follow my dad around constantly while he's here, dodging my mother as she attempts to stop me for conversation, because if she distracts me for a second, that's when an accident will happen. One of my kids has to put a chair against the front door and sit there to prevent my dad from escaping. My other kid tries to help follow him around and direct him to the bathroom, but he says mean things to her. He has started kicking my dog for no reason and I'm afraid my kid is next. We have visits like this once or twice a week.
Any suggestions? If we could just handle the urinating issue, I think I could manage the rest. I already put locks on all the bedroom and closet doors, and we lock them before he comes over, and just leave the bathroom door open and the bathroom light on so he can find it.
This is a tragedy and an example of why medically assisted suicide should be available in all states. Once you reach a certain point, it's over, and one should be able to exit with dignity. It sounds like your dad has already passed away in a real sense. His spirit and consciousness have passed on leaving an empty vessel that simply no longer works. This is such a cruel and inhuman disease. If I were to contract it, I would want the freedom to end my life, and the means to make that decision should be available to all of us.
Are there any other incredibly important details that you have left out of the story?
The schizophrenia is not much of an issue anymore. He used to think that hundreds of people were following him and that space aliens were monitoring him through his modem, but I don't think he can think of anything that complicated anymore. He's still seeing his psychiatrist, but mostly my mom and the psychiatrist discuss my dad's behavior and the psychiatrist adjusts his medication accordingly.
The anxiety meds are a recent addition. Dad used to be as sedentary as possible and now he walks nonstop, all day, every day. So the anxiety meds are supposed to help with that.
Worst case, the OP calls the police when a wandering incident happens and that will force an intervention.
My mom has had to call the police three times in the last two months to look for my dad. The last time it happened, the police asked for her date of birth, which means they were actually making a report about it.
Of course, she would rather have her daughter and grandchildren do it for free. Wow, with $5,000 a month in income, with a car & a house paid off, plus having "quite a bit in savings" your mom, IMHO, is really, really selfish. It isn't like your mom has to decide between paying a weekend caregiver and buying groceries or paying the electric bill or buying her medication (like the tough decisions many people have to make).
But, is that really fair to you and your children? Have you considered what they may be missing by being tied to the house every weekend, constantly on guard so that Grandpa isn't peeing, or yelling at them. Imagine being forced to sit on a chair by the door so that Grandpa can't get out, when they could be having fun outside in the sunshine.
What about when he kicks your family dog? I bet that they may be afraid that he will start to kick them next.
Yes, you want to do what is best for your father, but are you sure that you are doing what is best for your children by giving into your mom and providing respite for her?
I do not mean to sound harsh, but we just want you to look at this from the perspective of an outsider.
BTW, I am really surprised that she found people willing to care for someone with dementia for only $14 an hour. I believe that the going rate around my area, through an agency, is at least $25 to $30 an hour.
I know it's not fair to my kids. It's not fair to my dog either. I've asked the kids if they feel like they're in physical danger from Grandpa, and they said no. They're just worried about him peeing on their stuff.
I told my mom yesterday that their visits have to be short. She came over yesterday and after an hour I told her that we had to go ride bikes before dark, so they had to leave. The kids and I agreed that a short visit is more manageable.
And I would be a lot more sympathetic to my mom and try harder to help her if she couldn't afford any care for him. But I think if she were that bad off financially, Dad would be on medicaid and already be in a facility.
When dad was in rehab and they told Mom she had to hire a caregiver to come in a few hours a day, we called around and the different agencies charged $14-$16/hour. Mom went with the cheapest one but she only used them until Dad was out of rehab because she said she couldn't afford them after that.
In addition, the OP knows her mother is manipulating her, but won't stand up to her, so until that happens, she will just come here to vent, because she's not going to do anything about the situation.
That's true. I've tried to tell her things and she makes excuses or tells me it's none of my business. I don't know how to make her get more care for my dad. I can't take over and make those decisions, and I can't have a discussion with her about it because she starts crying and runs out the door. We tried to have an intervention when Dad was still driving and shouldn't have been, but she did the screaming and crying thing and nothing got solved. Then I reported him to the state. They sent a letter asking him to come in to discuss his drivers license, but Mom ignored it and kept letting him drive. Finally he drove the wrong way on the highway and got in a police chase, and after that she decided to take his keys away. But it took something major like that for her to actually make a change.
So no, I don't know what to do about her. And talking about it here helps, sometimes. I got the suggestion about the jumpsuit to help with the peeing problem, which is a big help. (I showed it to my mom and she had a million reasons why it won't work, but I'm going to order one for him and tell her he has to wear it if they want to come over.)
How would I stand up to her and force her to put Dad in a facility? Take her to court and try to show that she's incompetent? Two years ago she was still teaching college classes, she manages her finances and she takes my dad to lots of doctor's appointments, feeds him and keeps him clean, so there's no way to say she's not able to care for him. It's basically that she and I disagree about how much care is adequate for him. And all I can really do is refuse to let them come over so she has a break, but then I don't get to see my dad, and I still want to see him.
I feel sorry for your whole family, but your mother is a bigger problem than your dad.
And she is being emotionally manipulative and unfair. Has she always been this way? If so, then all I can say is "better late than never" when it comes to setting firm boundaries. But if this is a new behavior of hers, it's really showing the stress she's under, and may even be an indication of emotional instability or dementia in HER. It's totally illogical thinking on her part. Honestly, she sounds very unbalanced. Like I said, she's a bigger problem than your dad in this scenario.
I agree with that 100%. Your Mom's behavior isn't normal. Maybe it's a symptom of depression or perhaps she's just a martyr personality type. I recognize that it brings up a lot of issues for anyone to put a loved one in professional care, but these examples you've given are extreme. And given your story about the driving, this denial she's in has been going on for a long time — and she's putting herself and others in danger.
It's especially odd given she can afford the care and could still spend as much time as she wants to with him. It almost sounds like she's dependent on him and the attention this is bringing to her. She needs an evaluation and probably therapy. I suspect she will be insulted by that, but at this point your parents are (whether they mean to or not) being abusive to the rest of the family.
I'm so sorry for your troubles. I'm a caregiver myself, but this situation is extreme. I had a good experience with seeing a social worker I got hooked up with through my county's Council on Aging. She was well aware of all the legal and financial ramifications about caregiving and gave me helpful advice on dealing with my issues. She was very kind and sensitive, too. Perhaps someone like that (or a lawyer specializing in elder care law) could advise you on what steps to take for both of them. Just because she loves him and can keep him clean and fed doesn't mean he's getting all the care he needs. Her attitude about his driving is exemplary of how her decision-making is out of whack.
Last edited by Jukesgrrl; 08-24-2015 at 05:29 PM..
Reason: added info
Worst case, the OP calls the police when a wandering incident happens and that will force an intervention.
No, the worst case is if Dad wanders into the street, when his wife "accidently" leaves the door unlocked, and is hit by a car and dies (or something similar).
OP, I have to commend you for setting limits, only allowing a brief visit on Sunday and then having fun with your children and ordering that one piece jumpsuit for Dad to wear during his visits. Good job! That is a real step in the right direction of setting boundaries with your mother.
OP, I have to commend you for setting limits, only allowing a brief visit on Sunday and then having fun with your children and ordering that one piece jumpsuit for Dad to wear during his visits. Good job! That is a real step in the right direction of setting boundaries with your mother.
Yes, I agree. Your mom has to be the one to decide to either get home help or to put him in a LTC facility. She is in denial but at some point she will realize what she needs to do. Please keep us posted.
OP, I have to commend you for setting limits, only allowing a brief visit on Sunday and then having fun with your children and ordering that one piece jumpsuit for Dad to wear during his visits. Good job! That is a real step in the right direction of setting boundaries with your mother.
I agree. That is something at least, and if your mother doesn't like it, she can stay home. At some point she will realize that she can't do it by herself.
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