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.
I wish you well and pray for your endurance and courage.
She needs to walk a few miles in your worn out shoes:)) Hugs!
Rather than answering your question I’ll share what I see potentially wrong with the situation which if corrected might help a great deal.
You mention you being switched to another medication or adding something for anxiety, but how about your mom? Is she on the right medication? Doesn’t sound like it. Specially because you mentioned you and her, both, have different shades and forms of mental illnesses, such as depression, anxiety, etc...if you mix any of that with dementia, which you know she has) and neither illness is properly treated you have a really bad combination in your hands. So, I would focus on getting your mother properly medicated, that might get rid of half or more than your issues being her caregiver.
Also, try to change the way you look and deal with the situation, think of things your mom would enjoy..for example, can you take her out for coffee, for a walk (pushing her chair), to get her hair or nails done? Remember, the happier and more relaxed she is, the easier it will be to care for her, plus if she is more active during the day she might sleep better and that buzzer may reduce activity at night.
Also, get your husband on board with helping too! That will take some of the stress off of you and make him understand your journey better.
And when it comes to dealing with her, be patient and remember the goal is not to be right, but to be kind and really get to help her...without losing your sanity! Always consider what the end goal is, the big picture, that always helps to put things in perspective!
*the happier and more relaxed she is, the easier it will be to care for her
* remember the goal is not to be right, but to be kind
This is really good and on point advice. Thank you so much!
(P.S. I have a great husband who helps out as much as he can :) )
Here are some help option for you:
There are support groups for caregivers of all levels
Get your own therapy to help you out
Call the 800 numbers they are there to help.
Sign up on sites like care.com or indeed.com and look for some private care. The cost is a lot less. Figure out what you need most. Is is 2 days off completely, is it a 4 hour break 3-4 times a day. Or is it several night so you can get the sleep you need. If you are not getting the correct sleep you can't be good at what you are trying to do. It is so important for all Care Givers to take care of their personal needs. That must come first. Then you can help your loved one.
I understand this situation first hand. I could not get my Husband to admit or get the help Doctor wise to help him with whatever it was. I tried everything humanly possible to help him. But, I could not take his verbal ragging abuse anymore. I had to put me first and leave. It's very sad, I feel for him but it was his choice. He killed the relationship.
I wish you all the luck in the world. God's Blessing for you!
LBD is very difficult for the caregiver and even the professionals have said that there is nothing else they could do. As a professional carer I know that the behaviour changes every 5 min and there isn't a day that looks like a previous one. Don't take it personally, try to follow the 'flow' and don't try to contradict...just try to make your way around it. Just remember although your mother is diagnosed with this condition she doesn't stop being an adult... address her as such (don't mother her) and draw your boundaries (I know...I just said YOUR boundaries..it means that you leave her 'to be herself' while you take a me-time). Knowing that she is physically safe (washed, fed and watered) the rest doesn't matter as much. This condition doesn't comply with 'the norm' but within the patterns you still can see what is coming from 'your mum inner-self'). YOU ARE VERY BRAVE and shows that you are a loving daughter, but taking your mum away is going to be a necessity in the mid-long run.
Dusty
My mother started having difficulty about a year before she passed. She fell several times, broke her back although we didn't know it, developed incontinence and began having dementia issues. The real problem was congestive heart failure, which I didn't know she had (no one told me and I didn't know the symptoms) which led to her death. Her heart doctor explained to me that there was nothing to be done.
I was on hard-call, taking care of her for about 3 months. There were 4 trips to the ER, two trips to the house on a fall and 3 stays at different facilities.
Saved her life twice when her BP/blood sugar spiked, eventually put her on hospice and found her dead in the facility. Hospice was on site but she must have passed just as I got there.
After she passed, my father, maybe this exaggerates things, quit. And that was just the beginning for him. He started in his own little cycle of problems: bad back, trip to the ER, was dying from head spins, yelled at me when I got him hearing aids, still, won't really face that he's 87, etc. But, we're getting there.
The day I went back to my job, my control-freak boss sends me an email about something I'd done wrong, because control-freaks can't, ever, stop. Honestly, this guy was the worst part of all of this but I couldn't leave for several reasons.
All of this led to me sitting in a doctor's office with 190/100 BP. I couldn't sleep, had breathing issues when I'd try to sleep (turns out there's a name for this) and the GP wanted to put me on meds. My heart doctor's took a different approach.
Right about then I got incredibly lucky.
* My boss was told to stay out of my work. He couldn't, because, well, he couldn't, but it got a lot better.
* I started working out, again. Down 15 pounds from my peak.
* My father still has issues, he's healthy, and for the most part he's honoring my day's off requirements, is still able to live alone, and is slowly coming to grips with things. He can be tough to deal with, but it's tolerable now.
* My boss, this is later, was removed from the job of being my boss, and combining that, I've started to recreate my social life.
I wanted to write this, because, well, I had a very short care cycle, only a few months, and look at what happened to me? Taking care of someone in this condition is incredibly hard and while I'm the only child, I have a lot of resources other's here don't: like a really good job, family assets, etc.
I don't have any advice, what you do is what you decide to do, and what you can handle is what you can handle, I just wanted to point out that it's hard, really hard, and it's OK to get help.
We really need to evaluate end-of-life care as a society. There have to be better ways.