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
Tell her that this is better for her.Visit often and ask her if she needs anything else that the facility can't provide. A lot of Seniors in the facility are in the same boat and she will have or at least be asked to attend schedules of activities within. There are usually a doctor on hand and a nurse staff to assist. Don't feel bad,it's for the better.
Bobby
I did manage to find a wonderful place, but was still a move for my mom. 3 weeks later my mom was rushed to ER. Dementia robs its victims of every single thing and eventually they can't even swallow. She started aspirating her food, causing low O2 and high BP. My mom did have a dnr and I wasn't about to have needles in her lungs to remove liquid (which would only return) or tubes down her throat to help her breathe. She was very peaceful and she did pass away 6 days after entering hospital. Even though she wasn't really mom for about 2 years, she never forgot her children and after calling out for her mom for almost a year, I believe she found her. I miss making her happy and somewhat grounding her a couple times every week.
I have to say how much I appreciated her primary care doctor of over 30 years and hospice. Her doctor retired about 3 years prior and he actually spoke TO HER and not around her! He knew I was listening and NEVER left her out...like following (younger) doctors did.
I got hospice involved the day before mom passed, to be under their care back at memory care facility. Because I did, they handled every little detail after she passed and I will be forever grateful.
I am of course, looking to widen our bathroom doors and get grab bars, etc... cause sure as heck, they will be needed in the future! You are lucky you have that done already. Find the right fit for your mom, while checking places out, pay close attention to the other residents, especially in the residential homes. They were my preference, because my mom couldn't be alone in an apartment type setting. Can you imagine being somewhere and not knowing where you are or who the people around you are or why you are there? There just has to be caring caregivers that keep their residents busy with picture books, painting, coloring or Lawrence Welk. When my mom asked to call her mom or brother, etc... I would just tell her that we'll call after dinner, when they are home. Of course, a few minutes later she forgot. Redirect! Your mom may not be that advanced in this terrible disease, called dementia...but I wish you the best in your search. In the end, doing every thing possible to make her happy, will leave you with no regrets. My mom and I were always very close...I always told her I would keep her with me ... until I couldn't anymore. I found early on, that it was not an option.
It’s hard to let go of independence - though it sounds like she’s completely dependent on you so she is likely clinging to an illusion. Many of the facilities do a great job with care, activities, etc. You might consider waiting to find a suitable facility before telling mom, if only to spare your family her (unjustified) fury. Better yet if you could find a couple of options and let her choose.
How about a move to somewhere that will assist with anything they need help with? When actual skilled nursing facility (nursing home) is needed, my guess is that they won't know the difference. Many memory care and or assisted living facilities will allow their residents to have hospice care, there...not having to move unless quite serious care is needed, such as stomach tubes for feeding, etc.
This just hurts my heart, as my mom just passed away 1 month ago. Yes, my worries are over. And yes, I will miss her forever!
Part of what your mom is doing is the disease, another part is her own frustration of losing control, and another part may be her combative personality. But that means 2/3 of her behavior is disease-related.
Everything you are doing for her is in her best interests. You know that. Please keep that in mind continuously. You are a good daughter.
You may feel better after talking to a clergy person. I did and was shocked when he told me I was doing the right thing (you see what we daughters do to ourselves?!). You are caring for your mother and now realize she needs more help than what you can provide.
Get the best care for her that you can and then be gentle to yourself.
My mother is in late stages of Alzheimer's and my mother would make threats against my brother and myself.
In 2011, my parents came to my house for Thanksgiving and mom kept constantly repeating same question over and over, that worried me enough that I came home for Christmas (I lived 650 miles away) to observe her. I noticed mom seemed lost in all of the activities and she was quieter. I started making a list what I observed and my dad started calling me when she was in the shower and tell me things that mom was doing and saying. I mailed a copy to her doctor and came up there to visit, but mainly so I could go with her to see her doctor. Her doctor was great and after checking my mother over she asked my mother about her memory and mom said it was fine and I mentioned about her sister (sister & uncle had Alzheimer's) when was having memory issues, so her doctor told my mother due to her age as a preventative she wanted to send her to a specialist (neurologist) that if at a later date if she started having issues they would know how to address it and my mom agreed. My brother went with my dad and mom to the neurologist who stated that mom had Alzheimer's after testing and MRI.
My dad passed away in 2013 and my brother took over mom's care and her Alzheimer's started progressing rather fast. In 2015 my brother stated that mom's care was more than he could handle even with the home care that was set up when he was at work. We started having to make up "little white lies" so not to upset her so much. She would get mad over any little thing, yell and get very argumentative. We removed her vehicle and kept it at my brother's house, so she wouldn't try to drive. When she would asked about her car, we told her that she let Aaron (grandson) borrow it while his vehicle was being fixed and she would say "oh I remember that". One day most of the silverware and canned food went missing and my brother had to search the house to find it. My mom would walk out of the house when my brother was sleeping or mowing the yard and he would have to go and find her and she would be mad saying she was going for a walk. They argued over the thermostat, she wanted the heat on all the time even in summer. The caregivers complained about that and my brother said he would turn air on when it got really hot only to wake up middle of the night sweating and find that mom had turn the air off or turned the heat on. She wanted to cook and would leave the stove on and pans on burner. She had a dog that she fed several times a day, because she didn't remember that she already fed him. If we pick up the food mom would throw a fit. There were many other issues, these were just a few.
We visited many facilities and found a great memory care center that the rooms are like mini apartments and after she adjusted being there about a couple months, she mentioned that she wanted to go back home and we told her (white lie) don't you remember you pick this place out, you told us that the house was too big and you were having trouble taking care of it herself and had decided to sell it, so we sold it for you. She has never asked about the money or how she is paying for her "apartment". We are using the sell of the house monies and their savings to pay for her care. At this facility she can stay in same room until she passes even when Medicaid takes over the cost.
STP said something very important: When she told her mother she was moving to NH/MC, the mother threatened suicide. I think this is a key point. When you have someone threatening suicide, this is the opportunity to have them admitted for a psych work up to get their medications straight. There are the usual drugs to get dementia patients calm and balanced, but it takes a while to get the right combo. It would be ideal for her to be in a psych ward for those changes to be monitored so she can enter the NH with the proper drugs on board. The right combo made my mthr decent and the nurses all thought she was so sweet (sadly she was still evil to me in private and in doctor waiting rooms where they could not see her in action!).
There's nothing like just having your leg clawed and hours later having a nurse tell you that your mthr is the sweetest patient she has. Grr.
I agree with everyone, you don't ask, you just do it. Warn the NH first so they know what to expect. Because of your tough history with mom, staying gone a week or two is a viable option so you don't get the full force of her wrath. You need to protect yourself as well as your kids, and you have the right to stay away when you know she will be ugly. If your doc thinks mom needs a stay to get her drugs done, I'd treat that the same way with a drop off if she does not help you out by threatening suicide so the EMTs will cart her away for you.
She's never been quite right, and you deserved a mom that was all there. Mine was missing something important inside which is why I call her mthr. I'm sorry that you did not have a good mom. But you have a second chance to have a good mother-child relationship, and that is with your own children. Take care of yourself so that you can be the mom your kids deserve.
Secondly once she is there - when you visit always bring something with you & this doesn't need to be expensive just something - I did this with my mom & she began to greet my with a smile as soon as she saw me because in her mind I was 'the bringer of treats' - I would pick up a speciality coffee, Timbits, a plant [not flowers because a plant lasts longer], return a sweater that I repaired for her [she saw this as an act of love], or even a drawing from your kids - I bought a cute metal 'vase' [unbreakable] at the dollar store & put a few artificial flowers in it so the when needed I could bring 1 or 2 new ones to add to it
Thirdly given how she has hidden other mental issues for years - this is her problem not yours so don't loose any sleep over her verbal assaults that are primarily designed to make you do as she wants even though it is not what the professionals think is best for her - I must admit that I fostered the idea with my mom that she was at 'rehab' type place until her arm was better then ask how her exercises where going even to handing her an exercise ball I had bought her which she would squeeze it about 3 times & forget what she was doing but she was content with being in the NH 'until I'm able to go back to my own place'
Good luck with your mom & despite what she may yell at you ... you have shown her love possibly more than she deserves given her prior issues - I pat you on your back & send a big hug for 'that time you need it'
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
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.
🙏🙏🙏
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!
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.
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.
"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....
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 :)
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.