For me, the hardest part about dementia is trying to get in their world. I know it’s best if we as caregivers just “go with it”, but when what they say makes no sense - or it’s a direct question (that makes no sense), what do you do/say? How do I begin to have a conversation when it sounds 100% logical (but because I know my father, his life, and our family, I know it’s not).
My mind is on overload all the time because I try to dissect everything my father says (because I keep thinking he IS trying to make sense and say something to me). He struggles to get the sentence out, he mixes up words (calls my husband, my father or calls my daughter - his granddaughter, my sister) and he just says crazy things (last week he called to tell me that he was in a plane crash - that’s why he was there and not home - but not to worry, he’s fine). He also asks me if I’ve talked to “his mother” (my grandmother, who has been deceased for at least 10 years). I try to be in his world, but slowly it’s making me crazy! I feel like I’m losing touch with my world.
It's exhausting just to come up with replies to their statements. But it's what makes a dementia caregiver a special person. You can't compare a dementia caregiver's role to that of any other disease.
Think of memory as built up in layers. Take an example - his mother is someone he talks to regularly. That puts him in roughly what decade? That's where he is now. You go there, and then through questions and prompts you bring him back to the actual time - preferably something nice, like time for supper.
We constantly adjust to their world and their needs. We do not understand what they say but we pay attention to them, we remain calm, we convey love and empathy ,we calm them down and we redirect them to a fun moment, like play ball, do a puzzle, eat a snack, play a song etc etc.
They forget quickly what they want or how they feel. We are the ones suffering, as we are holding the pain in our heart and in our memory.
Let go and let God is my motto.
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We must remember to ALSO have self care and self empathy as we live with the ups and downs and the confusion that dementia brings to all of us
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I pray for all of us to have patience, go with the flow, accept the fact that we are grieving for all we have lost and create happy moments for our loved one and for ourselves.
Not easy, but necessary.
I know it's hard to have two realities going at one time but it's what has to happen.
What you're describing sounds like his dementia is progressing or he is on some medications that are not agreeing with him. You didn't explain where he is but since you said that he called you, it makes me think that he doesn't live with you.
Check his meds. If he's on a very strong pain med, it may be causing the gibberish.
If it's not the meds, then just accept what he says and try to go with that reality.
Telling him that he is not making sense will not help the situation.
When I call or go to visit, I just go with the flow, just like you wojkd with a child.
Dont worry about him not knowing peoples names or getting mixed up who is who. Just do and say things to make him happy.
If he asks about someone that has died, no need to tell him the person is dead as he will forget anyway and no point in having him relive their death time and time again.
When I go visit my 96 yr old Dad who has very short memory but sometimes remembers a few bits and piecess of the good old days.
He started calling the Caregivers Grandma a few months ago. Fine with me, he can call them whatever he likes as long as it's not rude.
He knows I'm his daughter because sonetimes he'll tell the Caregiver that, he'll say Hi Honey but probably doesn't remember my name and it doesn't matter.
Im happy he can feed himself and let the Caregivers know when he's hungry or have to go to the bathroom. They'll be both good and bad days and make the most of the good ones and forget about the bad ones.
The main thing is use your imagination, don't try to change his mind or Correct what he says or constantly saying Don't you remember or I just told you. Have Patience just like he had to do with you when you were a baby and asking all the What is this and Whys...You'll be where he us soon enough. Treat him as you would wish to be treated.
You need to agree. I find just saying yes, ok, it is, but mostly....that’s ok. That’s ok helps to keep him calm. If you think you will be able to carry on a normal conversation with him, you won’t. That is hard, I know. When this hit me hard with hubby, I reasoned with myself that the way I had to treat it was as if I was living alone. There would be no conversation when alone. I do not bring up the past because he has no memory of that. I never use the word, remember, he can’t. Do we talk about things, yes we do. The weather, the birds, what we are eating, what we are wearing, if we are going to get in the car, etc. His world has gotten much smaller, due to the brain and he is ok with that. If my hubby wants to talk about his Army days, with not true info, so be it. Take a deep breath.
I can’t say I have an exact answer to that . With my dad I tried to understand where he was coming from but it was difficult to pinpoint. One day he was happy to see me and would greet me as his daughter and two days later I was Mela(my name) but he would tell the aid his wife was here. Are they confusing words, thoughts ,? Probably.
I would question him on visits to assess what he knew to be true about his current situation. It was never clear or the same way each time we met
He thought he was in an apartment or a house and he would make reference to finding a place for the family to live.
On one visit I asked him what place he was referring to and he named a street he lived on when he was younger and lived with his mom.
He remembered me, my mom , my son and husband by name which was comforting. I believe the confusion would be at different levels on different days and difficult to totally understand.
Sometimes I felt these beliefs were ok and at least his being in a facility was not totally understood by him. He wasn’t unhappy, he talked about how he was doing, what bothered him and I felt the stress was more on me and other family members,
I wish I could say more. Be comforted on knowing your doing all you can and they are finding comfort in seeing you . Even when they confuse you for someone else it is the brain not performing the way it should.
Even when my dad thought I was his wife , I guess it was ok at least that made him happy.
Best to you
I have yet to figure out where "her world" is so I can go there. She never talks about the past or people from her past. Actually, she does not talk much at all until she goes to bed each night and goes to sleep and then all kinds of talking begins! I have a monitor in my room so I can hear her yelling and moaning and carrying on lots of conversations with no-telling who! Surprisingly enough, sometimes her sentences even make sense, but that is certainly the exception.
Sometimes she knows me, sometimes she does not. She hardly ever knows where she is, even in her own home of 47 years. I have eliminated the word "remember" from my vocabulary when speaking with her. And, these are the easy times now. Sadly, it only gets worse.