It's an unsettling way to live.
My mom is not considered incompetent event though she does have dementia, diagnosed last Spring.
She has made it crystal clear that she and she alone runs her life. (But be available when she needs help)
I could list 20 things but last eve during dinner twice I wanted to scream. First a nurse from her primary care doctor called to see how she was doing. Her PC doctor has tried to be more pro-active with my mom and her issues and enrolled her in a program that basically follows and monitors health issues. This is a very good thing. Well my mom could not have been more rude to the nurse. My mom stepped into the other room and got even meaner and told her to "NEVER call AGAIN". Then came out and proudly told me and my husband how she took care of that! No more calls to bother her! I wanted to vomit.
Then later she starts talking about her cottage and going there this Spring. I've already mentioned here that I don't feel she is safe to be there alone. Then my mom tells us she is going to keep the cottage and keep going so she can keep driving. (PA licenses need renewed every two years).
Again I could feel myself getting so angry, she should not be driving now! My husband briefly said something about there being problems with her having declared PA as her official residency (to get the license) and taxes and my mom just looked at him and said "I don't care".
I did not confront her, because it only gets worse. My mom can become enraged.
I'm always wondering how much bad behavior I will have to watch before she implodes and I am left to pick up the pieces.
Anyone else feel stuck like this?
Actually, don't hate me for this, but I think those health programs with the frequent follow ups are an intrusive pain in the ass. I'm smiling at your mom putting them in their place and telling them to leave her the hell alone (sorry)...but I know, in this case, it might have been somewhat a help.
My guess is that things will progress, on their own, to the point where you will ease in to making decisions and she will not be as combative and unpleasant. For example, at one point I yanked the knobs off the oven and the stove top (electric thank goodness). I still recall the day mom noticed and yelled about my putting those knobs back RIGHT NOW! Of course I didn't. And it was in a blink that it was no longer mentioned.
Safety is a big issue...so I understand the car...that's a separate topic that has been discussed here, and for your own well being and sanity, you need to take some very direct actions on that. She's already been documented to have dementia...because laws vary, I might get some legal guidance or ideas from the local police department...and then I'd snatch her keys or disconnect something under the hood.
You may have to stand by and wait for mom to have a crisis...It's such a miserable situation. Because you feel responsible and will feel guilty if anything happens to her or others...
Would you benefit at all from attending a support group via your local Alzheimer's Assn? We have one that is specifically for adult children.
I think we all deal with this stuff in one way or another. For me it is knowing the end of this story is not going to go well for me. My only sibling is out of state and can't even send an email to say hi how are you, or respond to one I send. I imagine she deletes them before she even reads them. It is beyond hurtful. So I know there are two endings: Dad passes first and I am left with mom with dementia who can't be left alone long so I will need to find a way to get inhome help while I work part-time securing what income I can for my own approaching retirement; or if mom goes first, Dad will be mine to further care for as independent as he likes to think he is; and I will be left to console him mourning a woman he is clueless as to how much I could never stand. I am ambivalent in that as I know some of what she is can't be helped...this is beyond the dementia years. But I am really tired of being wifey. I have been sicker/less resistant to bugs of late.
Hoping things work out for you...
I'll be following your story. This place makes me feel so much less alone. Hugs.
You might have a talk with her about being mean to the nurse and tell her something like - when you refuse to answer their questions or get nasty with them, they tell your doctor. They write down everything you say. The doctor might refuse to see you anymore or he might send a report to adult protective to have other people come directly to her home to see if she is ok.
Would she be able to get her car fixed on her own if it suddenly wouldn't work anymore??? That might slow her down on the driving. If you happen to take a part off of it to make it not work, be sure to put a note under the hood that she is no longer safe to drive and tell her a part will have to be ordered...it is a difficult part to find and might take a while...as well, put your phone number on the note. That way she can ask someone to check it out, but they will also see the note and understand the situation. Tape note to obvious place under the hood.
Not sure when her license comes up for renewal, but with doctor getting feed back on her behavior and her physical abilities, he is your best bet on notifying PA that she is no longer safe to drive and should not receive a renewal.
Curious to know if mom got a RealID or just a license. If not a RealID, she won't be able to board a flight after Oct 2020 - is she capable of driving from FL to PA?
They are both 90, actually went to HS together, but didn't know each other.
Mother has maintained a pretty decent level of health, she is batty as can be, but she can pretty much carry on a conversation and take care of herself. MIL recently had a bout of bad health that really took her to the mat. She SHOULD be living in some kind of Assisted Living, but DH, who is her POA won't push for that, so we are just waiting for another fall, another UTI, another bout with pneumonia. She lives alone and lets an aide in once a week to help her bathe (and hates it profoundly, but it's all that's keeping her from a NH).
I think both these women are going to live for-freaking-ever. I fully expect my MIL will outlive both her sons, my DH being one. I feel terribly for my SIL who has maintained the CG duties for her mom. DH travels 3/4 weeks a month and his brother lives 250 miles away and makes it a point to NOT see his mom.
I worry about SIL hanging in there--but she's tough. Dh can't do anything, really. He and his mom fight all the time they are together.
Oddly--our fathers died 15 years ago--8 months apart. We had a rough year, but they were both so sick, it was a blessing.
I honestly don't know what's keeping my mom and my MIL alive. Neither is 'happy' but they still tick along.....my mom was far needier than my MIL, but time has altered that a little.
Just life, I guess.
Is your MIL at least in assisted living?
I was only on the perimeter of Mom's/Stepfather's regarding your issue due to family issues (my siblings). When I was FINALLY ALLOWED INTO THE CIRCLE, I ended up having to make the decision regarding assisted living for both.
Has her GP or his nurse tested your Mother with that memory test that starts out with a word she has to remember, they give her additional testing and then come back to the word she had to remember?
If she fails, she needs full time help. I don't know the State you live, but where I come from, the Doctor can place the person into assisted living by Law.
Mom's GP told her she needed assisted living and Mom had a MAJOR HISSY FIT! I think people could hear her through out the office.
She told him to go to Hell and she'd call the police because he didn't have the right. He told her he did and HE WOULD CALL THE POLICE and they would physically take her. He asked her if she wanted him to call. Mom clammed up and wouldn't look at him.
He told her she only had 5 marbles left, if she LOSES JUST 1, she would be moved out of her house. She lost that 1 marble the next month.
Call a State department like APS to evaluate her. Tell her the person is a friend and act like the person is a friend. Call a reputable in-home care facility to help you get a caseworker to talk with you in a room he/she can talk about options and Mom will be evaluated at the same time.
The caseworker will set appointments for you to visit assisted living homes, NOT NURSING HOMES, to help you with your decision.
DO NOT BE AFRAID TO ASK QUESTIONS, GET THEIR STATE RATING RECORD, LOOK AT WHAT THE RESIDENTS ARE DOING, THE CLEANLINESS, BRUISING, RESIDENT LIMITATION.
Just remember, IF you find the one that YOU feel is perfect and within your money range, don't wait to reserve her space. There were like 3 caseworkers waiting to bring their clients to see the suite I reserved! Lucky we were the 1st to see. It's like bidding on a house!
The caseworker will help with the transition as well as the manager of the facility. You may not be allowed to see her for 2-3 months to help her with the transition.
I hope this helps you. Been there, done that, have the T-shirt, hat, and mug WITHOUT HELP from my siblings and the spawn of the Devil (step-siblings).
Take care of yourself. It's imperative.
That said, I still have a problem with my ego, but I am gradually overcoming it.
After last year I've decided that this year, I will let them live their lives. I will always make sure they are safe - that's my #1 priority - and healthy, but there's only so much I can do for them, they have to want certain things for themselves too! I'm going to see an Elder Care Attorney soon so that I can get all the ducks in a row because I don't want to have to slog through crap when it hits the fan. That, I'm doing for me, but they will benefit from it as well I'm sure.
At some point, things are going to change because it is inevitable. When that time comes, I'll do what needs to be done. But until then, I'm not focusing on that other shoe.
Does anyone have POA? Would there be enough of their funds to seek guardianship for your dad and perhaps mom too? It doesn't mean you must take him/them into your home (only do that if you want to AND are sure it can work!), only that you would oversee his care and determine where he lives. Assets would be split, should mom be able to remain in the home if she is still capable enough. I would think he is more in need at the moment, to get him away from her abuse and torture! An Elder Care attorney might be able to advise you, and they generally give you a free initial consult (have questions drawn up and ready, take notes, ask lots of questions!)
Using your zip code, you can find local EC attys at naela.org They can assist you with applying for Medicaid as well, if the parent qualify.
Here's the suggestions - routine is so important. I can't stress that enough. The more transitions or things out of the 'norm' the more unsettled and snarky my dad becomes. Talk to your mom's doctor-enlist their help in getting a clear and concise message across to your mom. One that backs you up and takes the pressure off of you and your husband to have to continually be the bearing of bad news - 'stealing away your mom's sense of independence'. It might mean you talk to the Dr before your mom goes in for her next visit. Also ask if there is any kind of 'testing' that can be done to see if your mom really should not be driving. Again, it's hard to argue with actual test results. If the Dr doesn't know check with AAA, or even the DMV. I don't know where you live other than PA, so it's hard to know what kind of resources there are out there for Seniors and their Caregivers, but it's worth checking with local and state government offices to see if their is somewhere that can provide you more resources to navigate your way through this time. My dad is not an easy person. It's tough to have him around 24-7. We try to take 'breaks' when we can, just for our own sanity. See if any of the senior centers that may be in your area offer "respite" care, or Senior "Day Care". I hope some of these suggestions might help. I understand how you feel, and there is nothing wrong with you feeling this way about the situation with your mom. Try to remember to take it a day at a time and know there will be good days and a lot of bad days too. Good luck!
Luckily, things have been passive for awhile, but always waiting for the proverbial 8-ball to drop. It has been a bit since I have felt like I was walking on eggshells.
But it is that not knowing when .... i.e. waiting for that one fall to happen ....... because she is so unsteady ........and use of her walker alternates between purposely walking without it, with her stating "well, I want to get stronger ", meaning she can only get stronger if she doesn't use it versus accidentally "forgetting it" {{{ with her innocent look }}}.
She either doesn't get it or ignores, that using the walker, she does and has become stronger. But I tell you what, that little 94 1/2 yr. old can walk fast with it !
((((hugs))))))
I see your Q anyone else? already has 50 replies. I call it the WFTF club (Waiting For The Fall). Someone may have a better name?
You are not alone my friend.
You are preaching to the choir! You took the words out of so many people’s mouths. It’s sad. It does make children angry. All I can say is you are completely justified with everything that you feel. Hugs!
https://youtu.be/I9OlDFL-FkA
On bad days, he is quick to anger and blame me for problems and trying to keep him "sick." Some days, he realizes he isn't alert enough to drive and will let me. Other days - the bad ones - he insists on doing his usual errands even though he isn't fully in touch with reality. I pray the whole time he's gone that he comes back in one piece. I hate to be in the car when he's driving, but I also feel that may be I can help avoid an accident. But then, if there is an accident and we're both hurt, there is no one to help us, and who will take care of the dog? (No children, no close family.) I tried hiding his keys but that was not pretty! Now he's paranoid and looks for them whenever they aren't in his pocket.
When I try to convince him that he is in a dream, he doesn't believe me and blames me. At times it seems like he even hates me.
We will be married 50 years this year, and never in my life did I ever dream we would go through anything like this!
You are not alone. I, like you, am waiting for a disaster.
My heart goes out to you.
I'm at my wit's end! He won't go to see our PCP earlier than his scheduled appt and if I alert her ahead of time, he will know and then put more blame on me. I know he isn't always in his right head and it isn't my "real" husband talking, but he does make me feel so guilty. I am keeping a log of his daily ups and down for our PCP so she can get a clearer picture of what goes on.
Not to be heartless, but you need to consider the risk that you are letting him put others in by not doing something to take the keys and car away.
Ironically her "crisis" actually happened just prior to the date we planned for her to move to MC (adamant she wouldn't move, EC atty said guardianship, facility said no committals!) Not as serious as a broken hip, but still a dangerous condition. I found out from her neighbor that she "bruised" her leg. Never told us or sought medical treatment. It was snowing that night I found out, with 1.5 hr drive and my 4WD out of commission, I couldn't go check it (Thursday night.) OB was arriving Fri night, with instructions to check the leg right away and send pix. I had to threaten him with calling the PD to get him to take her right then to the ER. Turned out to be cellulitis. For those unaware of this condition:
"Cellulitis is an infection of the deeper layers of skin and the underlying tissue. It can be serious if not treated promptly. The infection develops suddenly and can spread through the body quickly. Severe infections can spread deep into the body, and can be life threatening."
Key words: serious, quick and life threatening!
It took two rounds of antibiotics and a long long time to heal. She was lucky the move was planned when it was - my next trip down might have been too late.
YB used this "incident" to draft a letter from "Elder Services" at the hospital and it said she either moves to a place WE pick, or they will place her! She thankfully bought this hook, line and sinker. Madder than a wet hen, but she went with the bros.
Curious about the license and residency rules. All kinds of info online about how long you have before you MUST get a license, but not how long you must reside there during the year to maintain it (lots about school, taxes, etc - maybe the tax angle? It does state you're required to pay a "part time" residency tax.) I recall mom and dad change to FL license, to save on taxes (really it was pointless, because MA doesn't tax SS OR Federal Pensions!) There was some requirement of 6 months and a day to claim residency elsewhere. Also, how does she prove residency - just owning a cabin? Does it have utilities? Car registered in FL? Insurance in FL? How is it that not one person scratches their head and asks how is this possible? It isn't like PA is next to FL!!! I would not think 3-4 months "living" in a cabin qualifies for residency...
Easier said than done, but given that we don't know what or when the crisis will be/happen, there isn't a lot of point to worrying about it (bad advice from me, a sometimes worrier!) I would ensure you keep separate finances, etc, in case she hits someone or something, and perhaps seek advice from EC atty about what, if anything, can be held against you because you were unable to stop her.
Do you have power of attorney yet? If not, you need to try and get one. You may not be able to do this until some sort of tragedy happens and it is needed. Something similar to my experience, where my mothers friend and Financial Manager tried to steal tens of thousands of dollars from her. It was so traumatic that she agreed to sign over power of attorney over finances to me.
Once you have obtained this, the first thing you need to do is take that power of attorney to the post office and have an address change. Have all of her mail sent to you. That way you will get all of the important documentation that you need to make sure her bills are paid. She might eventually get suspicious and might even scream at you, like my mother did me, but stick to your guns. She will eventually forget that she even gets mail.
Next, you need to talk to the doctor and have him send in paperwork to the DMV stating that your mother is not capable of driving due to dementia or have him require a test to prove that she can still drive. It will work either way because I guarantee you she will not pass the test.
Your mom is going to be a pain in the butt for at least the next two years. However, as the dementia progresses, she will become less difficult to handle because she won't remember anything. She will raise a fuss and then forget.
You have to utilize therapeutic lying. Tell her whatever she wants to hear. That's what the doctor told me to do. It may take a few Incidences to get to the point of taking control, but trust me you will get to that point. Let her yell and scream. I know it hurts. Try to get past that and just keep an eye on her safety.
Please start working towards these goals. It was a two-year process for me. There were so many things that were screwed up about her finances. I couldn't even believe it. Get that power of attorney and get the mail sent to your house.
Also start a Daily Journal writing down all of her behaviors. This was very helpful when I produced this information to the doctors. I had dates and detailed information that a doctor would have no way of knowing. Start today!