While Dad knows and grieves his sensory losses, Mom is totally unaware she has any problems. She also can't remember her beloved of 70 years can't see (macular degeneration) or hear. While Dad tries very hard to meet her every need, she gets frustrated, angry and yells at or mocks him. I'm totally stressed out trying to meet their conflicting needs. Being a referee isn't what I 'signed up for'. Can I tell Mom to stop acting like a petulant 2 year old? I don't know how to deal with this anymore and I'm close to burnout.
One question comes to mind... if brother is far away, what do you envision will come out of him having a clearer picture of their dementias? That he provide more respite and/or take over some of the caregiving? Or that he will support in home care?
In any case, start documenting like crazy... right now and retroactively if possible. Keep your brother and your parent’s doctor in the loop. I would even say try to get a couple of especially challenging episodes on video or audio.
I say this with great understanding that that feels invasive. However, dementia patients - especially two who may be feeding off of each other’s delusions - often turn on their caregivers. Think of it as insurance... you may never need it. Later, you can destroy the video and no one else need see it. But while they are in your care, you may have them accuse you of things, call police on you, or badmouth you within your community.
Reasonable protective measures can deepen your brother’s understanding, while at the same time, protecting YOUR family unit... which is vitally important.
I wish I had better news for you, but I am going to be honest. Someone upthread said that 2 people with dementia is too much for home care, especially if one of them escalates quickly and often. I have to agree. We tried for a very long time to “keep them home” because we thought it was the right thing to do. We even ended up bringing in a nurse 24-7. Even WITH the nurse, my DH and I still needed to be around often, and were putting out fires all over the place. With 2 different needs to manage, 2 different dementia symptom sets, 2 different personalities and frailties, it was like herding cats daily. And one of the cats was antagonistic, spiteful and just plain mean to both his wife and to us. Wife cat would run under the couch before she would contradict him:( Yet, we had to protect her from him, protect ourselves from him, protect him from him while trying to give them both some semblance of quality of life.
For us, it was an impossible situation. We had been caregivers for many years for them, know them intimately and had a really terrific relationship going in. They had set up all of the paperwork ahead of time. We could not have planned better. The dementia blew all of that out of the water. When logic is gone and manipulation and anger are what is left, the best de-escalation techniques are kind of a shot in the dark. Redirection? That might work about 40% of the time. Soft music/massage/folding socks? That never once worked in our house. Entering into their reality/agreement? Even that only worked part of the time because they can hold multiple realities in tandem so to speak. Even if you give them what they want, they would immediately stop wanting it and want something different.
Don’t get me wrong. I think these techniques are important. I do think, however, that they work better in a controlled environment for people who aren’t family and who GET TO GO HOME after a shift.
We moved them to memory care last week. We still have a long road ahead of us, but we have a family. Our family and our health and our sanity are moving up the priority list. People do not understand. Family members are upset. My in-laws are not happy. But they weren’t happy here either. It isn’t where they are so much as WHO they are now - in the dementia - that makes them unhappy. We can’t fix that for them.
But, at MC, they have distractions, an environment built for them, fresh people with a new supply of patience each shift, buffers between them so he can’t completely dominate her.
I know you are looking for tools to keep doing what you are doing, and I am sorry I can’t help more with that. We tried everything... Teepa Snow, 36 hour day, talking to Alz nurses, etc.
If it means anything, when we started to look to place them, EVERY single medical professional we talked to - without exception, whether connected to memory care or not - were shocked that we were caring for 2 dementia patients at home. We had no idea this was not normal. No wonder we were so exhausted. And trapped... because they are in your home. Calling APS or waiting for something to happen is MUCH less of an option when they are in your home.
For what it’s worth, know my thoughts are with you. This feels like an impossible situation, I know. However you choose to handle it, it is obvious that you care deeply and want to do the right thing. I am sure others will be better at providing you with some tools. I just wanted you to know that, if this seems impossible, it doesn’t mean that you have failed them. The circumstances are external to you and your husband and are not for lack of effort or love.
I believe they both feel control being taken away from them (by the Dementia) and their behavior reflects unconscious attempts to regain some control over their lives.
We are trying to find someone who can come into the home for a few hours, 3 or 4 days/week to provide respite for me. My husband has cut back his hours at work to take over from me and let me de-stress. I worded my question poorly, I guess. What I'd like to know is, is there a verbal de-escalation strategy I might use to calm the emotional atmosphere?
You three could be in the same room and Mom will still find a way to fall in an instant, and if she hits her head, that becomes really serious.
My own Mom thought if she was going to fall that my Dad would swoop in like Superman and catch her before she hit the floor. Well, my Dad had issues trying to get up out of a chair, plus he needed to use a walker, and he would probably trip over his cape. So much for that idea.
I was very shocked and disappointed because she was nowhere near ready to go home and the social worker was no help whatsoever. I did learn that Medicare does NOT automatically pay for 100 days of rehab. It is highly dependent on the diagnosis they give the patient on admission and/or discharge.
I wish I knew then what I know now and I would have left mom in the nursing home and took my chances with Medicaid.
So yes, now I am waiting for something more serious to happen, but now that she lives with my husband and me, that is not likely to happen.
Why I mean "after the fact" was after my parents had passed. No wonder I was getting these telephone calls from Dad asking me to come to their house to fix things. One time the light bulb in the cathedral light needed changing, that meant a really tall ladder. No thanks, that ship had sailed.
If I tried to tell Mom it is time to hire a handyman, she looked at me like my hair was on fire. Nope, Dad can fix these things. I couldn't change her mind.
I tried to sway my folks to move into Independent Living, but Mom wouldn't have any part of it. Even though the two of them would fall going up and down all the stairs... [sigh].
Only thing we can do is wait for a serious situation where 911 is called, hospital stay, then onto rehab, then transfer to a nursing home. So many of us here had to have that wait.
If they can’t get into a nursing facility, Medicaid does have several community services hey can provide. Make sure you get an assessment and some relief!
Caring for 2 parents is beyond what anyone is capable of doing. Have you considered moving your mom into a skilled nursing facility? You can't adequately care for both them on your own. No one could. And it sounds like your mom is more of a handful than your dad.
Their illnesses and dementia will only progress. It won't ever be any easier. It will just become more difficult. I only had 1 parent to care for and I got so burned out that I didn't feel human anymore. It wrecked my health.