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
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.
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! 🙂
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.
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.
Have a great trip to Disney!
We learn from each other here.
Mom's neurological evaluation is scheduled for mid-March and we've hired an amazing geriatric social worker to get us through the process. She's a perfect fit for mom. The social worker is a chaplain (my mom is a devout Catholic) and was a regional nursing home administrator for 20 years before opening her own practice. She came highly recommended. Her 1st meeting with mom is this week and she's going to start it off by administering communion and praying with mom. The goal of the first few appointments will be to develop trust with my mom and have an opportunity to get to know her. The cognitive evaluation (which the social worker arranged for) will be the next step. Once we have those findings reported, the social worker will present us with a long term care plan and timelines for our review. We'll have toured local facilities by that point, so that information combined with the cognitive report will have us prepared to begin the transition. The social worker told me yesterday that she can see why I'm such a mess right now. As she put it, I'm flying blind. I don't know the specifics of what's wrong with mom, what progression I should expect, or what the local options look like. It's no wonder I'm uneasy about everything. She feels the neurological report will make things crystal clear and I'll be viewing the situation from a place of knowledge. According to her, that'll help immensely.
I knew I loved her, though, when she told me that if mom's really uncooperative, she won't hesitate to come for a visit with a local priest and let him have a talking with her about what's in her long term best interests. Genius.
As some of you suggested, the social worker does not feel I'm the right person to guide the transition to a memory care community when the time comes. After speaking with my therapist, she believes that I was an "unfortunate" coping mechanism for my mom's mental illness throughout my life and that there's too much history of manipulation between us. Mom is never going to cooperate with me and my role in this situation needs to be a supporting one - I need to lead from the shadows and let the "team" (doctors, social worker, priests, etc) appear to be the true guiding forces in all this.
It'll all take time. The short term band-aid proposed by the social worker is adult day programs at local memory care facilities. She feels getting mom out of our house 2-3x/week will benefit the rest of the household far more than home health aides.
We had made booked a trip to Disney for the kids before all this happened with mom. I was thinking I had to cancel it but the social worker insists that it's a must for our family's mental health. She's working on finding an in-home caregiver for that week and is urging us to take this break before the tough work begins. She commented that this trip has the added benefits of getting me out of mom's line of vision so that mom's "team" can work with her directly without the "crutch" that I provide to mom's mental state.
By the time we return from our trip, we'll have a clearer picture of mom's health status, a direct understanding of the nearby facilities that are available, and will have provided the social worker our feedback on the community options she's shown us. Then we'll finalize the long term plan and mom's "team" - neurologist, social worker, doctor and priests will step in and begin directing the transition.
Then you can talk to your therapist about the yawning gulf between the relationship you longed for, and the one you actually had, and still have, with your mother. And with your mother no longer dominating your house, you might even be able to hear yourself think about what your therapist helps to make clear.
This will be okay, you know. Have faith. You can come to a realistic assessment of a person, and recognise certain truths, and still love her. I would even say that the love you feel must have greater validity, surely, when it isn't hidden in the FOG.
Whatever you have recently discovered and however much your understanding changes, your mother is still your mother and it is right that you go on caring about her, as you will. She still has real needs, physical, social and emotional. You will be able to supply them much more effectively, and with much less damage to the other important people in your life - including yourself - when you have all of the resources of a good facility to call on.
The main difference will be that you won't be constantly drawn back to the lifelong quest for the answer to her happiness and satisfaction. Which, as I'm sure you accept by now, does not really exist. Letting go of it properly, decisively, will be very difficult for you because it has always seemed so real, just out of reach; but then that's what therapy is for. Keep going :)
"Try not to call it a facility. If it is assisted living, some of these are like resorts- if it is one of those kind, call it the resort and try to "take advantage" of all the activities with her. It might change her outlook."
More than likely it wouldn't matter if you called it the Taj Mahal. We picked out a nice place, but any discussion about moving ANYWHERE was met with adamant NO.
Also, you said: "I hope I never need memory care, but at some point, if I can afford one of those fancy assisted living places when the need arises-I won't fight."
Don't be so sure! Mom very often went on the tours and free lunches at the various ALs near where she lived. She would often say she needed to clean out/up in case she had to "get outta here." When I asked what she meant, she said AL. When the time came that she needed to move to a safe place, NOPE. We even tried bringing help in, only starting with 1 hr minimum to check on meds and safety. That lasted only a few months. She refused to let them in. In her mind she was independent, could take care of herself and could cook. Answer D: none of the above. The one time I ASKED about AL, she said PUGH, I wouldn't live in one of those places! One brother had to "trick" her into going, and although she went, it was begrudgingly and she was madder than a wet hen! That was all despite HER planning to move to AL when she needed it!!
Dementia has a mind of it's own....
There is no point to discussing it with her, and by not mentioning it, you won't have to argue or listen to her useless threats. Our mom would not consider moving ANYWHERE. The staff had told us to just get her there, they would handle it going forward.
It might also be good to stay away for a while, maybe 2 weeks, before visiting. Visits - how often and when and for how long - can be dealt with later. You may have to limit those as well, depending on how she adjusts. Staff can help by letting you know if there are better times of day for her (some people have sun-downing, and become unreasonable later in the day, but are good in the morning. Others might just be unreasonable any time of day!) If she starts on you during a visit, pack up and leave.
Arm yourself by reading up on dementia. Much of what she is saying/doing is the conditions she has talking. Don't take any of it to heart! However, she is not going to get any better (some medications can tone down some of the behavior, but it will progress), so you need to do what's best to protect yourself AND your children! Taking in a parent or another loved one is done with the best of intentions, but when that person is unmanageable it will not work. It was great for our grandmother, but she was easy to take care of and did not have dementia.
Don't worry about ruining your "relationship". It is what it is - clearly it was never the greatest. Whatever she says and does before, during and after moving her, don't take on the guilt. It is not anything you've done, so none of it is your fault. If she threatens to hate you or haunt you, remember they are just idle threats. She can say she hates you, but she can't haunt you (unless you let her!)
I knew there was no way I could live with my mother (brothers thought it was a great idea to take her in after hearing the cost of the facility!! AHAHAHA, never happened and that was for the best too!) No guilt. I ensure she is in a good place, well cared for and take care of everything else, so I've done what I can. You can only do what you are able to and keeping her in your home is NOT the best option.
One more thing - regarding expenses you have incurred: I would talk to an Elder Care attorney and/or a tax accountant (I found an Enrolled Agent, look up what this is online) to see if you can deduct any of the cost of care or modifications made for your mom. Usually EC atty will do an initial consult free of charge. S/he can also assist in signing up for Medicaid. EA should also be able to answer questions about the expenses, and if need be, handle the tax prep.
I cared for my folks for 11 years and my relationship w/ my mother got worse and worse. We were both operating from 60 years' old frustrations when she had 8 children and I was the oldest, so the helper.
As an elderly person she said "no" to everything! When we moved her to AL she was cared for by very nice, but a rotating staff of nurses aides that she couldn't distinguish among. She still says no, but she smiles and gives in. She's happier than she has been since she married my Dad.
I guess the bottom line is that if your mother has dementia, all the nasty talk is about your very old relationship when she had control over you, a kid; her feeling of powerlessness; and the nasty feeling of losing her mind. Her care is what is paramount, followed secondly by your sanity. Ignore her rants and find a place where she'll be cared for, be safe and you can resume a reasonable family life.
Good luck and blessings.
Bravo for your honesty. I dont have a good/great, oh hell...even nice relationship with my mother- never did- but still struggle with doing the right thing. I had someone say to me- By trying to save one, your loosing 2. Didnt hit me at first, but the thought never went away, and believe it or not, the harder it is with her, the clearer the meaning.
I did the admiral thing, although I despise her. I was a mental wreck since childhood, ZERO self esteem, and thru the benefit of distance- I almost blew a 40 yr marriage once she moved here. I got physically sick, had heart surgery, an small stroke, went dam near broke and thats the short list!
I think your heart says Oh My, but your brain knows better. Dont take my path, take hard learned advice. Let her hate you, its fine. It wont change anything- NOTHING! UNTIL YOU let it. Your in control, you dont have dementia, BPD, why live like you do.
Hang in there girl, there are a lot of us out there, we hear you, respect you and send a few prayer your way. You got this!
Talk to your Counselor about maybe not being there for the transfer/admission. Or be out of her site meeting with staff. This might be better.
Picking a facility:
You have two key facts for interviews of facility staff. She could not recall Day/Date/Month. She has outbursts of anger, which she does not remember later. So, ask for specifics on how they will handle her. Staff ratios and training levels for patients with her presentation! Get specifics! How will they handle it?
Do they have extensive activities to keep her engaged..based on attention span of a 2 year old? Will someone do this therapy in her room if she wants to stay in bed? Do a surprise visit around 6-7am. How many people are parked by Nursing Station for meds?..making it easier on staff vs patients.
If they don't allow a surprise visit, then you probably don't want to go there.
HIPPA does not mean you can't see any other patients or patient care, when choosing a facility. You can't ask patient names of staff, or conditions, but you can interact with them, observe them. This is very important. Remember, if a placement does not work, you can move her (breach of contract?).
I totally empathize with your issue with her previous doctor. Went through this, then with my friend Mom ( my neighbor).
Cognitive decline can mimic Psych Issues & Visa versa. Both are all about the brain...duh. From you comments about lifelong issues a Psych Diagnosis was probably involved. If her doctor bothered, he could have read DSM and had a better feel, and could have tried different meds.
Great that you have new doctors!
Regarding her anger,
Blame it on the doctor! Blame it on technology and meds were not available 10-30 years ago. She lived when there was no polio vaccine...go with that concept.
Maybe if old doctor gave her proper medicine sooner (skip that they were psych meds), this would not be happening.
You and she can not repair her damaged brain. Just like football players, they didn't know how to see the damage on tests in the past.
Also a Mini Mental Health Exam is a screening tool. In my trained opinion, you need to write State Medical Board that he did not do one until she was this far gone. Unforgivable! I am sorry, but you could find a version online or at the library. She would have flunked it a long time ago!!! He is endangering patients!!!
The point is, it is like taking your temp or BP....will indicate when something is wrong, but not what.
Soon you will know more of what, but window of effectiveness of new RXs is probably closed.
It will help to know if it was a stroke... different testing..but sounds like you have the right team now.
Don't worry about her outbursts. Glad to hear you are working on a plan to protect your mental health. She will forget. If the children overhear, have explaination ready. Work with your Counselor on this.
- She was telling Mommy a scary story.
- We we're acting...make pretend.
- Her brain got a BoBo, she doesn't know what she is saying. It happens sometimes when people get really old and sick.
🙏🙏🙏
I know exactly how you feel. After my husbands stroke I faced the very same challenge. I will make this short. I had a dr say something to me that helped me.
He said , do you love and care for your husband. Of course I said yes. He said ok, there is no choice. For his safety and yours, it is the best thing you can do. You are doing him no favor keeping him home. In fact, it is dangerous for him and you... emotionally and physically.
I did admit him. He was not happy at first, but he did get over it. I was able to visit daily, which helped. But, your mom needs to be in place she is cared for 24/7. YOU, need to let other people help. You need to live your life as well. Do not hold on to guilt. Know , you are doing what you NEED to do. For her and you!
xo