Mom is 70 and has Lewy Body Dementia. Her dementia is mostly visible in that she is no longer ambulatory (wheelchair bound). Her mind is "mostly" intact. I am only 49 and have been her caregiver for 3 years. My family on mom's side (including her and myself) has a history of mental and emotional illness (anxiety, depression, hallucinations). Unfortunately, I have been changed to a few different anti-depressants over the last 3 years that have not helped the situation. I'm finally starting to mellow out but mom keeps telling me that I'm mean to her and then 30 seconds later be mad at me saying she didn't say that or I'm taking it out of context.
The stress level and increase in blood pressure has caused my doctor to now also prescribe me anxiety meds to take as needed. I'm young and only been doing this for 3 years but besides my husband, I have no family to help. I haven't had a vacation in years and my mom has a buzzer for when she needs something that has been rung during attempted periods of intimacy with my husband. I feel like I'm already at the breaking point. :( How do people do this for years? Is it possible that I'm emotionally defunct to the point of not being able to be a caregiver or is that just a cop-out?
I pray for patience and humility. I don't know what else to do. Respite care is out of reach at $275-$350 a day (or $150/day if she stays for 2 week minimum). Thoughts? Thanks in advance.
You are stressed and anxious not because there is anything the matter with you, but because you are living in an environment that is full of causes of stress and anxiety. Until the causes are addressed, those treatments for your mental health are utterly pointless.
I am not unsympathetic to your poor mother. At 70, she is young; and we have learned from brilliant narrative posters such as Jeanne Gibbs how cruel and overwhelming LBD can be. I do recommend you search for some of Jeanne's answers here on the forum. She cared for her husband, not her mother, but you will still find lots of wise, practical advice there.
Stop thinking that there is anything wrong with you. You're not emotionally incompetent; you're not defunct; you're not any word that means you lack some key quality that a reasonable human being ought to have. [Aside: you are expecting your mother to be normally rational. Stop expecting that. You'll find her outbursts and accusations less painful to deal with.]
Have you thought what work goes in to providing the care and support a person with your mother's condition needs? In a professional setting, you'd be looking at a team of three-ish trained, qualified and experienced people, plus the facilities and equipment, plus the visiting specialists and ancillary staff who all contribute to creating a good quality of life for their charges. You can add the work up in terms of time, training years, money or whatever; but what it will never add up to is a realistic job for one person and her husband in the family home.
So. You need a different plan. Start by contacting your Area Agency on Aging and asking for advice on resources and support.
You are always so thoughtful and articulate, not to mention wise.
Thank you for sharing yourself.
I might also question how you would feel if you toured a facility to place your mother and they said that there would be one caretaker assigned to her and that she would work 24/7 for three years taking care of all your mother's needs. I don't think family members consider that when they believe they can do that alone for extended periods of time. I might question if you really believe it is feasible.
Start your research, do some tours and commit to the one that’s the best fit.
It’s a blessing that your mother has adequate money. As for Mom’s attitude and vile words, she talks to you like you’re dirt no matter where she is. So make the choice that gives you your life back.
If you keep the status quo, you won’t just be mentally and physically wrecked. You’ll be divorced, too.
It is no shame or tragedy to admit you aren’t cut out to do it. If you are a religious person, know that God and St. Peter will not judge you harshly because you put Mom in a facility.
You need to get well and stay well. You’re way too young to spend the rest of your life like this.
Mom needs to be somewhere permanently. She can go away for days or weeks at great financial hardship to you, but as soon as she comes home, you’re right back in it again.
Tomorrow, call your local Medicaid office and ask to apply. You might even be able to apply online. Or, if you feel she’d be approved, find a facility and she can be “Medicaid pending”. Then start a spend down if you need to. Or, consult with an Elder Law Attorney which will be easier.
This is a situation that will not get better. Dementia only gets worse. You have no chance to get you’re feet on the ground, or apparently anything else, as long as you’re waiting for that buzzer to ring.
Try a carer that is not with an agency. For heaven sake take the buzzer away. Maybe not all day, but at certain times.... O_o
Believe it or not lots of people live without a buzzer and they are just fine. People in nursing homes have buzzers and they forget they are there. They manage just fine. You just turned yourself into a personal attendant. If she is in a wheelchair she isn't going anywhere.
Perhaps you can get a carer as a sitter and take a few hours with your husband. Try college kids who are looking at health care careers. You can be a good reference. They will have the patience to stay with her a few hours while you go out. It will give her an outlet too. She might look foward to seeing them, and you get a break.
You were joined by an umbilical cord once. You cant stick it back in. Its long gone and your an adult now Lol. You need your own time and stick to your guns!
Set mom up in her room or in tv room and have alone time with your husband. Could be for a snuggle and watching tv.
Put mom to bed early with her tv and plan an at home date nite. A good meal and a movie. How about a 2$ redbox movie? Play a game like dominos. You don't have to spend $ to have fun.
Try listening to books on tape while you wash clothes, clean the house. How about a great Frank Sinatra song- "if I can make it there, I'll make it anywhere" and sing at the top of your lungs whilst dusting?
Take a 15 min walk to distress. Play a computer solitude game.
You have to start making time for you. Only you can do that. You don't need permission.
If mom has a fit guess what? Too bad. You can always say I need time off. I wouldn't elaborate about date night or it will become about her one way or another.
You can always say thurs we will watch/do something you want. Friday is my family time.
It's really about setting limits and boundaries. Try small boundaries first, then work up to bigger ones if you have trouble. Good luck~
When you talk to her about it, make it clear that you love her and aren't abandoning her, and that you will still visit, but that you can't do it all by yourself any longer, and want to look at places with her to find her a nice one that she likes.
Please no guilt-my Dad is 91, you could have 20+ years of this. And it will never get better.
Best of luck to you. We finally got our Dad placed-by forcing him in legal ways. Now we can breathe again!
You deserve that for you and your spouse.
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