Some of you may remember me. I've posted previously about having moved my 90 yr old (soon to be 91) mom across the state to live with us last April. She was no longer able to maintain her house, her expenses, or herself. Moving in to our home was the only option she would agree to, so we put our entire living room in storage & that's now her room. We only have a kitchen, bathroom, & 3 bedrooms now. Then we spent $15k to renovate the entire (only) bathroom in our home to make it completely handicap compliant. Shortly after mom arrived, the cognitive issues she'd successfully masked all came into view. We knew she had physical limitations when we opened our home to her, but the cognitive stuff really blindsided us.
Her long time physician was a real trip and danced around the idea of "potential cognitive decline" for months. I wanted so badly to cut bait and find a better doctor closer to us, but all the physicians in mom's network had waiting lists for new patients, so we had to do our best with her existing doctor for a time. It wasn't until I walked into that office with three pages of behavioral observations we noted over a span of 5 months that the doctor finally gave mom a mini mental health assessment and confirmed the official diagnosis of dementia. But that's all the doctor told me - dementia - not what type, not what stage. But at least it was a start.
Finally, in late-January 2019 we got the good news that mom was accepted as a new patient by a GREAT local doctor. Whew! Having someone who's proactive is a breath of fresh air! Reviewing copies of mom's medical records has been a real eye-opener. There were periodic entries over the decades made by her previous doctor that mention likely bipolar illness and probably a form of personality disorder (BPD is noted - borderline personality disorder). Mom was given multiple referrals to a psychiatrist but always refused treatment. I never knew any of this until last month. Surprise! I always thought something was wrong with me that I just couldn't manage to keep our relationship happy. *sigh* Needless to say, I'm absolutely in therapy now to sort this all out.
We have a geriatric social worker hired and a full neurological exam scheduled to pinpoint exactly what stage & type of dementia we're working with. Yesterday the social worker discussed facilities with us and wants to take us for tours. She has concerns that our house isn't well-suited to someone with advancing cognitive decline and that it would also become a severely isolating and confusing experience for our two young kids. Additionally, neither my husband or I can stop working our full time jobs. Mom came to us with nothing. We're covering all of her costs and ours at the moment and frankly, we need every penny we can earn.
Mom knows she's declining, and yet is defensive about it and in denial. I can't really blame her. I'd feel the same. We haven't had any conversations about care facilities or the like in ear shot of her. But I know she's thinking about it because she confronted me with serious hostility out of nowhere last weekend. Saturday morning she woke up angrier than I've ever seen her & told me if I ever put her in a home she'd hate me even more than she already does. Then she said that once she's gone, she's going to haunt our house and everyone in it for the remainder of our days. THANK GOD our kids weren't around. The haunting comment would've scared the absolute heck out of them. It sure sent chills up my spine. A few hours later, it was like none of that had happened.
Today I'm feeling quite horrible knowing that if the neurological report shows moderate to severe dementia (like we think it will), I'm going to blow what's left of our relationship out of the water permanently when I tell her she's being admitted to a facility as soon as we find one. She's never going to forgive me for that. Our relationship has always been fragile. I don't see how it withstands this. What a way to end it
We learn from each other here.
Have a great trip to Disney!
Wubba, there is so much hope in your last post. Finding that geriatric social worker is a God-send. I don’t remember anyone like her in the years and years of caregiving for my parents. What a blessing!
I was struck by what your therapist told you - that you were “an ‘unfortunate’ coping mechanism” for your mother’s mental illness throughout your life. I can very much relate to that as my mother suffered from Bipolar Disorder (previously called Manic/Depression) for as long as I could remember. I believe that is what caused me to detach emotionally and at times, physically from her. It was a self-preservation move to keep from being drawn into her mental illness. She and my father have been sharing a room in a nursing “community” (I like that term!) for the past year, and it is remarkable that I have been recently experiencing feelings of love and affection for her that I have not felt in over 40 years.
Yes indeed, care-giving, whether in-home, with or without assistance is taxing, both financially and emotionally/physically. MANY people cannot afford even what you have managed to do (and acknowledge that even with two good paying careers it is difficult!) It is almost equivalent to trying to get good child care without it taking up one's whole net income!
I can't speak for my brothers, but I am certainly grateful that my parents were thrifty enough that there is enough to provide mom's care (I manage it and there should be enough now, after sale of the condo, to provide more than 10 years of care, including increases and she is 95 now.). They traveled, had a second condo in FL and spent plenty of money on things (esp mom and her clothes, shoes, handbags!!!), so they were not penny-pinchers, but still had a nice nest egg. I am retired and there is NO WAY I could afford to pay any of those fees (EC, or facility.) One brother is also semi-retired, so no help there either. The younger brother is working, but has two girls in college, so it would be a stretch for him to provide much!
Even sadder is that the ones who provide the hands-on care, aka do the REAL work, are pretty much the lowest paid people in the whole system. Any wonder why some are not exactly up to our standards? Sure, there are plenty of good care-givers, despite the low pay, but it is hard to keep good help when their pay is not enough to keep them to a good living standard!
Consider your EC fee relatively good. We paid for the trust, POA, etc from mom's account, and it was a set amount. Because we had a special life-estate for the condo and had to sell it (over 14k/year just for taxes and condo fees - too much to just let it sit, and that doesn't include the repairs that had to be made!!!), we had to use that attorney for closing - $400/hour!!! Down side for you is that mom doesn't have the funds to cover these costs. Again, consider, as Wubba1108 pointed out, how others cannot even do this much, as they don't make enough to cover those costs!
As you pointed out, hiring in-home care is VERY expensive, and actually ends up costing more than a facility (if you need 24/7 care.) $300/day = $109,500/year! $25/hour for 24/7 care is even worse ($219,000.) Granted it would be much less if one only needs certain hours covered, but still, the average person/family cannot afford this! Consider how many people are here and how many more there are out there who haven't found this forum yet who are struggling with elder care!!
Those who have the strength and provide all care for your LO, all blessings and kudos to you! Those who can afford to give mom and/or dad the care they need, same to you. Moms and/or dads who wisely set aside something, hazzah to you!!! For the rest, our deepest sympathies.
But, I would very much like to know what results you get from an actual neurologist. As far as kind and stage. I have always felt that such a fast label of dementia was given to my grandmother without many tests. Considering that I DO know she had a urinary infection when taken in....she is EXTREMELY hard of hearing. I believe these things alone could be mistaken for dementia. My grandmother also has a (faded) history of symptoms of mental illness through the years. These were heard in hindsight too.
But, replying to the part of your post that struck me the deepest......
It was wonderful for you to take her into your home. Not alot of people could do that. And IF they do, it very often ends in a nursing facility because it becomes too much, or other things in one's life make it impossible. But quite bluntly...this is sad. Watching them with dementia is sad. The process of caring for them is sad. This whole thing is sad but it happens and it's just unbearable to watch the ones we love go through the process of even just aging. First, I realize your relationship is delicate. But I would like you to know that if you put guilt on yourself, it gets much worse. You love her. I know that because you moved her into your home. These are very difficult situations, and you are not a bad person. They do not like it, no, and in my (our) case there was alot of yelling at my mother. (Who put her in the facility). It hurts terribly. But you want her safe. You love her enough to want her safe. I know they don't understand that reasoning. They sometimes think we are just “locking them up". The only thing I can think of to say to you is this- the whole process for me, was upsetting. That didn't include the yelling my grandma did. I cried alot. I thought I was terrible because if my mom puts her in a home, maybe I could bring her to live with me. And if I didn't do that, then I wasn't a very good granddaughter. But my home isn't big enough. I just got married & that would put stress there before we even get a chance. (Oh, I'm 50, wasn't sure if the word "granddaughter" made me sound young) lol.
I also am on disability for spinal problems and even if I did bring her here, I couldn't help her much with the difficulty that she has walking too.
I had to be realistic. I had to do a lot of self compassion work. I had to forgive myself for not being able to do what my mind was telling me I "should" do. I was lucky tho as my grandma was more angry at my mother who had her pulled out of her apt by the police. I believe that could have been done a different way and done with much more gentleness and compassion. But Grandma DID refuse all help. She refused to talk to the doctor about it and it escalated to that.
All I can say is that I'm sorry you have to go through this. I'm sorry we all do. Please don't be hard on yourself. We have very little choices when these times come, but a good safe facility is sometimes the answer. You ARE doing your best. Even though they may not understand, we can't blame ourselves. There is nobody or anything on this Earth that will give us so much of a terrible time as our own minds.
I wish you comfort, send you love, and hope things work out well for all of you. I wish you gentleness on yourself as much as you wish it for your mother. I don't have answers for your situation any more than my own. But I hope things work out. I send you so many positive thoughts! 🙂
I wish you the best and I hope that in a few weeks, you will feel more at peace with your decision...that in my opinion, is totally necessary. Going for a visit, taking her favorite food, watching an old movie with her, doing a puzzle, squeezing the chocolates for her favorite, calling friends/ family for her to talk to and looking at photos...is what you could be doing a couple times a week...not going out of your mind with worry every day.
I realize that all forms of dementia and its victims take a different path...I just hope that my way of joining my moms world during our visits will help you in some way.