I've been caring for my mom with dementia BY MYSELF. She's lived with me for 2 yrs and 8 months. I haven't had 24 hours to myself in that time. It's becoming increasingly difficult to have any time to myself even within the household.
I managed to take her on vacation this summer and it was the worse vacation experience I've ever had and the 1st vacation I had in 7 years. We almost missed our connecting flight and she was approaching that "sundowning" stage. One gate away, she decided she wanted to sit down on her walker and look around as if she was the victim. My heart was beating out my chest, I couldn't imagine missing my flight and being stuck with her for HOURS. I had to rush her, speak assertively and even raise my voice a little.
People were looking at me like I was the bad guy and it hurt! I have been isolated, stressed, missed MY doctors appts, in debt, work full time for my employer (from home) and care for her full time without financial assistance. When I reach out for help, everyone drags their feet. I have to get her in Assisted Living in 2025. I can't survive like this.. And to top it off, we are being harrassed and stalked in the town we moved to. I am a protector but don't know how much longer I can protect her when no one is protecting me. My faith is strong and I pray a lot. Does anyone know if there's a way to get some emergency assistance? The Social Services office in my county has not replied to me. I'm probably going to have to move again. Praying for all of us!
You do matter!
And, you deserve a vacation, without mom!!
Please take the advice others are telling you.
What happened happened. It does not matter now whether they went on the trip.
What matters OP is burnt out and needs solutions.
She needs like Alva said drastic action, pronto.
She is like countless women, in debt even though she is working and has MS. Clearly, she tried her best.
Deep down you had to have known that taking your mom on a vacation was going to be fraught with problems. (You do know you could have made the airline aware that you needed wheelchair help to the gate. They would have taken both of you to the gate on a cart) And at some point trying to take a person with dementia out of their element (home) is going to be a problem.
Asking for help does not necessarily mean asking family and friends although in most cases friends and family want to help, they just don't know what you need.
You can check with your local Senior Service Center and see if there are any programs mom might qualify for.
You can check with Area Agency on Aging and see if there is help available that way.
If She or her husband was in the Service she may qualify for benefits through the VA.
If there is an Adult Day Program in the area get her involved with that.
I am of the belief that a person with dementia should not be living alone.
To that there are options. Some much better than others.
The 2 that I would not suggest would be you move in with her or she in with you.
I am also of the belief that a person with dementia should not be in Assisted Living, there is a great risk of them wandering off and getting lost. While the front desk receptionist might see someone and redirect them there are many doors and it is not the job of the front desk person to monitor those that should not leave the grounds.
So please begin your search for Memory Care not AL.
And do you have POA? Can you make these decisions for her?
If you do not have the legal paperwork done get it done ASAP. If an attorney after talking to her does not think she is competent to appoint you POA you may be looking at going the route of Guardianship and that is more difficult, expensive and time consuming.
Whats next, are you going to slather your hand in honey, shove it into a beehive, then blame the bees for getting stung?
You have no one to blame for any of this but yourself.
She needs to be in memory care. Forget the home care.
Please listen to Alva and put your acting hat on.
You should not wait till 2025!
Please note that 40% of family caregivers die leaving behind the love one they were caring. Those are not good odds. Yes, like you mentioned that in 2025 your Mom needs a higher level of care with more people to help her. I would start now with the Medicaid (which is different from Medicare) application for your State. I heard that such an application can take months to get approval.
Plus it is good to place a person into skilled nursing facility, or if your State offers waivers to help pay for Memory Care, sooner than later. That way your Mom can learn her way around the facility, be able to recognize the Staff at this point in time, and get use to the sights/sounds of the place. Try to set up her bedroom the same position as she has at your home, if at all possible.
What ever you do, do NOT use your own money to help pay for care for your Mom. You need that for yourself later down the road. As for your sister, sounds like annoying gnat, that you need to just brush away for the time being.
Desperate times may mean desperate means if all else fails. This self admission would give you a very likely admission on a 5150 (if you reside in the USA) which means a "72 hour hold". In that time the Social Services will ramp up to work with you on hooking you up with psychological counseling, anti depressants, MD followup.
Meanwhile, back at the ranch, if you have called an Ambulance you can let them know Mom needs 24/7 and must be admitted HERSELF.
Or bring her to the ER WITH YOU.
This all gets BOTH of you access into the cubicles at once in ER and into the Social Services system.
Do let them know, if you have already a POA you need to resign and wish the state to take over. This gives them the power to place mom, oversee her care and finances, and takes that off you and out of your hands.
Now this is the most desperate of measure. And I suggest before you do it you see your MD for other outreach. The fact you HAVE seen him gives you already a leg up.
I wish you the best. I honestly, in your position, feeling desperate in a society that seems to care very little to help, would go to any lengths at some point. Because at SOME point you will end where I tell you to preTEND to be, anyway.
Heart goes out to you. I am so sorry. It's apparent you have no support.
Please take care.