How do I convince my siblings that I need their help?

Gracey Lou

I've been living with and caring for my mom for several years. Her dementia has progressed to the point that I don't feel she should be alone. Since Covid, I've been almost her entire social outlet. We are together almost 24/7, except for the rare times my sister decides to take her out. Inevitably, they go have time with my brother that I haven't seen in years. So for days after, all I hear is how wonderful my siblings are for taking her out! Yeah, if they're so wonderful, where the heck are they when I'm overwhelmed and begging for help?

grandpasgirl

my biggest piece of advice would be to just tell them. i know that's sometimes easier said than done, but they don't or won't know what needs to be done until you tell them what needs to be done. this is something i am dealing with, in a sense, as well. i am not there 24/7 and caring as much as i can from a distance - but it's evident to me more than ever lately that my family needs to be around a little more. not just to visit and give care from time to time, but to also let my grandmother have the sigh of relief every now and then.

towhee

Hi Gracey Lou, welcome. Dementia makes family relationships so complicated. I think one statistic says that of 5 families dealing with dementia one family will pull together and four will break apart. I'm going to throw out some things, although as I know nothing about your particular situation they might not apply.

To begin with if none of your family is spending significant time with your mom (I mean 24 hours a day for a couple days, not a 2-3 hour visit) than they have no real idea of your mothers condition. You can tell them till you are blue in the face but unless they see it it might not sink in.

By the time a person with dementia is no longer safe to be alone for a couple hours their caregiver is usually cooking meals, cleaning house, dispensing medications, arranging doctor appt., being a patient advocate, a chauffeur, reminding about showers, taking care of socialization and entertainment, finances, washing clothes, dishes, dealing with constant repetition, anxiety, anger, having to learn totally different ways to respond to the PWD so crises don't spiral out of control and by the way having what they do and where they go for every minute of every 24 hour period controlled by the needs of another person. And unlike dealing with a small child, it will never get better, only worse.

But from the outside looking in it might not look like you are doing that much. And by the way, they might think, you are getting a free place to live after all. And if you get angry at them, they might think you are the one with the problem. 

So, we can try gritting our teeth and being nice, asking for specific small things with a short time limit, picking up groceries, staying for a couple hours while you go to the doctor, etc.

We can try simply telling them that we will be gone for x amount of time and we have arranged for caregivers to come in and that the caregivers will cost PWD x amount of money unless they want to contribute or stay themselves. Paying for caregivers yourself is not a good idea.

We can try having a family meeting with an objective outsider, such as a counselor or Alzheimer assoc. rep.

We tend to value what we pay for, you might ask to be paid for staying with your PWD.

If at all possible get other family members to take care of the PWD for a weekend. 

Be aware that sometimes this ends up with family wanting the PWD to be place in assisted living if finances or medicaid allows because they feel it would be better for the PWD, or they don't want the hassle.

Sorry, I'm in a pessimistic mood tonight. I hope your family can be one of the ones that pulls together.

Gracey Lou

I feel the pessimism tonight too. I'm doing all those things, while having my own health issues. 

I asked my sister 3 weeks ago to take mom shoe shopping. I take her everywhere else, so sis had agreed to these trips with mom. I again asked 2 weeks ago, then just continued to bring it up. She promised she'd do it this weekend, but guess who just put mom to bed with a promise I will take her for shoes tomorrow. 

Arrowhead

Find an excuse to need to leave for a few days and ask for one of them take her for that time. 

Take her with you to their house, leave her and tell them that she is their responsibility. Only as a last resort.

towhee

It might work better with a specific appt. If you give them leeway, often they think they can just show up whenever because after all you have nothing else to do. So, need you to take mom shopping this week. What day would be good for you-Weekend? Saturday or Sunday? What time, 10 or 11 in the morning or 1 or 2 in the afternoon? Ok I'll expect you or have mom at your place at x time. With one reminder a couple days before and one the day of. Something is more likely to happen if you agree on a specific time.