Mom and dad BOTH live with my husband and I and they are divorced. Mom is 90 and doing okay, dad is 94 and has dementia. Every minute he asks me the same question, over and over, and cannot hear my answers even with good hearing aids. I feel guilty like I’m not responding to taking care of him because he doesn't realize that I’ve already responded and done what he asked 4 times in the last 4 minutes - but he doesn’t remember. It’s horrible. I can’t solve his problems with itching, nor can the doctors. I put cream on constantly, have pills that I give him. But he looks at me like “can’t you do something to get rid of this itching??? And he looks at me like that every 5 minutes. I feel that I'm literally losing my mind and I dont know how much longer I can handle it, on top of his full time care and caring for my mom. I do not have a life and the life I have is consumed with groundhog minute, not Groundhog Day, but minute. Every minute. I feel as though I am literally going insane. I take such goood care of him, I’ve devoted every day to that, and yet he doesn’t know it and it just makes me feel so guilty.
YES! HE DOESN’T KNOW IT. And the REASON he doesn’t know it is because he has dementia and hearing impairment.
Dementia MEANS that he no longer has the cognitive equipment to interpret and/or respond to the care that you provide.
So, stop. If you “…don’t know how much longer I can handle it”, STOP HANDLING IT.
Research the best Memory Care facility you can find locally with a connection to a skilled nursing facility. THEN, PLACE HIM.
Many of us here have lived situations very similar to yours. We were SURE we were doing THE RIGHT THING. Some of us (me) gained 60+ pounds of stress weight, slept on floors for months to protect our LOs from falls, felt guilty 24 hours a day, and ultimately either got much sicker and sadder ourselves OR our LOs expired, OR ……….WE PLACED THEM.
Less work after placement? Less guilt? NEITHER, but for me SLEEP, seeing my mother happy and at peace, and a chance to save myself AND HER.
Think about it…….is the balance in this arrangement working for you? Think about it.
Wow. You sure had a time of it. Sleeping on the floor to protect loved ones from falls. No doctor would prescribe sedation or sleeping medication? God bless you for doing so much.
Call Council on Aging in your area. Ask for an assessment for your parents. Contact a social worker to find out what care is available for your parents. Do they have money for assisted living/memory care? If they don’t you can see if they qualify for Medicaid. Nursing homes will accept Medicaid.
You are going to burn out if you continue doing the ‘hands on’ care for your parents. Place them in a facility and be an advocate for them. Visit as their daughter, instead of being an exhausted caregiver in your home.
You deserve to live life with your husband. Wishing you and your family all the best.
The repetitive questioning eventually stopped as the disease progressed and my mom declined more mentally and physically.
In addition to repeating things, she also hid her things and accused people of stealing them. I spent hours and days looking for her stuff all while she cried and panicked and made a scene. There were other crazy things she did that were just as maddening like stealing things from the stores, and picking all the fruits off the trees before they were ripe. One year, she picked hundreds of my oranges when they were still green. Grrr.....
I got so burned out dealing with her. She lived with my family for two long and extremely stressful years. Finally, I had to move her out before I lost my sanity.
Janet, if you want to save your sanity, you've got to put some time and distance between you and the source of your stress. No other way.
Some suggestions:
You can hire someone once or twice a week to stay with your parents so you can go out and destress.
You can find a place in or outside the house where you can go hide, relax and forget about your parents for an hour or two daily.
Your brain is always on the caregiving job 24/7. That is why you're burned out. You have to mentally clock out and not think about them for at least several hours a day, sleeping does not count.
You also need to realize that you can NOT fix their health issues, so DON'T own them. There is no reason for you to feel guilty. You can feel bad for their problems, but no guilt. You don't have a magic wand to fix what ails them.
As some point when their needs become too much and are beyond what you can provide, you need to think about placing them in a nursing home.
Also, come here to vent all you want, that helps too.
2) Try to adopt a different mindset to the repetition of questions - my brother looks after his MIL who has mid stage dementia but can still go out for a car ride or with him to the shops. She repeats the same questions and same story every few minutes - but whereas like you it would drive me insane he looks at it differently - he knows she can't remember so he has one stock answer for the situation and simply repeats it without thinking about it - not something I would have thought to do, I would try and not sound like a parrot, but he says she is perfectly happy, he has no stress, and as a coping mechanism it means he can deal with her when he would not be able to otherwise.
3) You need a break - even a few hours away - can you arrange for someone to come in for one morning a week to sit with him so that you know you have a certain time that belongs to you.
4) Regarding the itching - may I just ask if you father's doctor has done a liver function test? Its just one of those strange things but reduced liver function MAY be linked to incessant itching.
Hugs to you for doing such a loving thing for both your parents.
Your father can refuse nine ways to Sunday about going into respite care for a few days. It's not his decision to make. It's yours.
You need time off from caregiving. Don't guilt yourself about putting either of your parents into facility respite care for a few days.
A few days is better than a nursing home for the rest of their lives. Let that be the choice.
As for dad repeating over and over. That's a dementia loop and when someone gets in one it makes no difference if you answer them every 30 seconds or not at all.
I've had dementia homecare clients who would get in a loop and keep asking the same question over and over. Sometimes more than 50 times in a matter of a few hours. Answer the the same question a couple of times and then stop answering it.
This will have no effect on them, but it will on you. To save your own sanity you have to ignore them sometimes. Like not answering the same question hundreds of times because they're fixated in a dementia loop.
If it's safe to leave them alone in a room, walk away. Also, there has to be an end of "shift" for you and time off. If bedtime is say 9pm for them, then that's it. They go to their rooms and go to bed. The same as they did when you were a kid. The only thing they're getting after lights out is maybe some water or taken to the bathroom.
If you have to ask their doctors for sedation medication or sleeping medication to put them to sleep, do it. Otherwise you will lose it, trust me.
Maybe look into some homecare to help out with some of the care during the day. Or if your parents aren't incontinent look into adult day care a couple days a week. Most adult day centers won't take clients if they're in diapers. There are some out there who will and they even provide transportation.
Please look into getting some care for them before you become the one who needs care. Keep us posted.
Dementia is a horrible mind disease and people who live it don't know they have asked the questions or said the same thing 500+ times. I found with my dad I would 99% of the time just say yes, no, or nod and smile with no responses given. They won't remember anyhow. A person with dementia meets a new person every second. While this is not going to sound helpful, you should be thankful they know who you are. Many people don't know their own family and that hurts so bad.
Itching seems to be a thing with dementia, could be dry skin, could be nerves acting up or just a reflex or even thirsty. Talk with the doctor about it.
Best wishes as it is very challenging and you are doing a great job providing care for your parents.
So glad you came to share & vent - it helps. Understand the groundhogs day reference, it applies to my situation now as well as Alice in Wonderland-going down the rabbit hole or sitting at the Mad Hatters tea party & living in the upside down. Everyone's advice was great Janet, key is respite for you in one way or another. I've found that living in the Alzheimer's world, think outside the box. It may be difficult but try, creativity & humor can be your saving grace & PLEASE learn to detach emotionally. Once that happens, it becomes easier to handle. When people ask what I do, I tell them I'm a single mom with an 85 y/o toddler who acts like a teenager 😂 wishing you the best and PLEASE KNOW YOU ARE NOT ALONE. sending hugs your way
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