What should I do to help my mother more with my stepfather and has dementia?
I and the stepdaughter of the family member with dementia. My mother (whom is 71 herself) is turning into a completely different person. Ever since the diagnosis in 2019, she getting worse as he gets worse and worse. She's definitely clinically depressed, and feels trapped "as she's told me." I'm living at home now since Covid started and his diagnosis. I have made things harder got the situation on some ways I believe do to my own problems, and I feel completely ashamed. I've never known my mother to be so hateful and mean to me. My fiancé is also helping here around the home doing the manly stuff I'm not able-bodied to do. He's been a real help more than she even notices I'm sure at times “if she notices at all."
I just need help, she needs it desperately, as does he and my fiancé, it's stressful, and taking its toll on us all. What to do?
If mom is super stressed out and acting hateful and mean towards you, she's losing HERSELF in his care. Stepdad can be placed in Skilled Nursing care with Medicaid and mom will NOT be left impoverished as a result. Set up an appointment with a Certified Elder Care attorney and get guidance on that matter asap.
Wishing you the best of luck with a difficult situation.
Oh... I just read the part about how your mom was with you. Forgive her FOR YOUR SAKE and peace of mind.
* Do that you can emotionally / psychologically and then stop.
* Do not over-extend yourself.
* As below, get help for all concerned.
As I am limited for time here and tend to leave long responses - I will say to contact Teepa Snow's website - and call them. Ask them how to support you and your mother. Find local associations for support / groups.
Get into therapy / counseling or find a social worker to assist.
This is very difficult for the entire family.
Find support wherever you can.
Gena / Touch Matters
Some of the advice here is great. But, I feel one thing hasn’t been addressed: mom has changed so much and is mean and hateful. I am becoming that person, as well. This is serious. I’ve been to counseling, antidepressants, have lots of friends to vent to, etc. But, bottom line is: I still am the caregiver and it’s like going to a funeral every day of your life as you watch the person’s brain deteriorate by the week. I was a volunteer at a major cancer center for a decade, volunteered at a NICU unit for sick babies before that. I was always happy - even at my job which was mega stressful. I’m a different person now. This is destroying me. I feel angry and resentful. I feel mean, too.
FTD is so different than Alzheimer’s, Lewey Body Dementia, etc. It’s like the person is dead - no expression on the face - nothing behind the eyes. Just walks around like a zombie. After awhile a normal human being just can’t process all this sadness.
I am not one to ask for my kids to move home - just the opposite. I know the answer to all of this: put him in a home for what he has. I interviewed and researched and the cheapest is $15,000/mon. and then I apply for Medicaid. No Assisted Living for this - it’s Skilled Care as he has to be told everything! Even what a bar of soap is for! Not so easy. There goes all the money with not much left for me to live on. I get to keep my house - I won’t be able to afford to keep it if he goes. We have an Elder Law Attorney and a financial advisor. Doesn’t matter - it costs $$$$$$! So, all the advice from all those wonderful people who mean well has to be be changed to realize that families just don’t put the sick husband away - it can break most hard working people. I would do it probably in 8 months as he has about 2 years to live. FTD progresses fast once diagnosed as it’s so destructive to the frontal lobes of the brain. In home care isn’t what it’s cracked up to be, either. Expensive as well! Bottom line is: if this mom above is so stressed, her light at the end of the tunnel would be to find a place to put him and go on. Living in the home with them might be a bad idea, too. I need “manly” stuff done, too, so I hire anyone I can find and just ask someone and you find they’re very willing to help - like hanging blinds and the drill isn’t working! Ugh!
Good luck to you BreeFitz80. Your mom needs help desperately. Problem is: if SHE is changing due to her stress, you will, as well. It sneaks up on you. One day you’ll be snipping at everyone and think “where did that come from?” Then, it happens on a regular basis. It’s time to make a drastic change.
We can have no idea what she needs and what you can contribute.
Please posit this question to your MOM. She will have answers for you.
Start with question #1 being "does our living here with you help you or not help you; do we need to find our own housing?". Question 2: "Will you make us a list of things we can do for you to help you".
This may be cleaning, cooking, shopping, and as you say the handyman things.
But this is for YOUR family to work out together, and I am so glad to see you want to know how you can help, and recognize that you may add a burden to your Mom.
Neither of you belong there. Your mother's telling you through her hatefulness and meanness that you are not welcome. Look at it from her point of view: She wouldn't feel comfortable asking you to leave for various reasons. You're her daughter. You have nowhere to go. So she acts out.
You and fiance need to get your own place and lead your own lives. IF you have a future together at all, it needs to be separate from the drama at home. Send a letter to mom's doctor and tell him/her that mom is seriously depressed and needs help with that. Mention your SF's diagnosis and the strain it has put on the whole family. Say you're leaving the family home for good (I certainly hope). You probably won't hear back from the doctor unless mom has given permission for you to know her medical issues. But doctor can address it with her.
Why can't SF go to a memory care facility? That needs to be discussed pronto. He probably belongs in one and would be happier himself where there's more going on than family snipping and sniping at each other. No one wants to live like that.
You can change this. Good luck!
Too much togetherness is never a good thing. Everyone needs their own space.
I can appreciate that you don’t like seeing the changes in your mom. I’m sure that my children didn’t like seeing me change when I was caring for my mom.
Let’s be realistic, our lives change drastically when we become caregivers. I struggled with depression and anxiety when I was a caregiver.
Have you given any thought to when you are moving out of your mom’s house? I think that’s a good place to start. You and your fiancé can be supportive while you are living in your own place.
Best wishes to you and your family.
If your mother wants to be a care martyr and enslave herself to the bottomless pit that is caregiving to a person with dementia, there's nothing you can do.
Caregiving often wrecks a person's life and their home.
She has choices though. Like homecare and even facility placement for your step-father.
If you really want to help her, help her explore these options.
What health problems do you have? Are you contributing to the household expenses. You know people take out their frustrations on family that is there. Thats you.
You need to sit down with Mom and find out what she wants. Tell her to be honest. If its that you need to move, so be it. Dad may need to be placed. Mom would need to see an Elder Lawyer to look at there assets and split them. Dads split going to his care. When the money runs out, Medicaid is applied for. Once on Medicaid, Mom remains in the home, has a car and enough money to live on from their SS and any pension received. There's more to this and the Elder Lawyer can give her more info.
You do not say what your physical limitations are that caused you to move back home. Does fiance' also live there with you, or does he have his own digs? I hope the latter, and I hope you will consider moving in with him rather than Mom is that is the case. But who knows what the case is, because you don't say.
I recommend you sit down with your Mom and ask her how you can help. Ask her if she will come up with a list of things you can help with. Respite for her so you can watch stepdad while she sees friends? Shopping? Cooking? Laundry? Cleaning? Then DO these things. Try to give her space when she needs it and try to be there to LISTEN. Don't add your own problems to her plate but discuss your problems and solutions with your fiance'. These things would not be easy for ANY family. That you are struggling is called NORMAL. Be sure that you help Mom access any resources; educate yourself about step-dad's diagnosis so you know what she and you can expect. Watch Teepa Snow videos with Mom and discuss.
Good luck.
You yourself said in your post that you've made things harder, so perhaps it's best that you and your fiancé find a place of your own and only come a few times a week to help your mother if she needs it or requests it.
I can only imagine that once you guys are out of the house that that would relieve your mothers stress immensely. And using the excuse of Covid, no longer flies as a reason to live with them, nor does your stepfathers dementia if you both being there are only making things worse.
You and your fiancé need to start your life on your own, out of your mothers home so she can better concentrate on what is best for her husband, whether it be Adult Daycare, hiring in aides to assist them or even placing him in the appropriate facility.
And she can better concentrate on getting help for herself as well, so she can continue on this journey with her husband.
It reads to me like you are sponging off mom and that would piss me off, too.
Then, since you think your Mom is depressed, is she willing to see a doctor, since treatments exist for that? Make an appointment for her and then attend it with her. You can discretely pass the staff a note identifying who you are and your concerns about your Mom's mental health. While there, ask the staff for the HIPAA Medical Representative form. Have your Mom write in your name and make sure she signs it and hands it back. This will enable her doctor to freely (and legally) discuss your Mom's private medical info with you without your Mom having to give more consent or to be present. Or, if she has an account in her clinic's portal app, you can help her login there to make appointments and see results of tests, medications, etc.
Your Mom is the person who should be helping her husband, not you and your fiancee. But since you live there and care about your Mom, IMO you need to help assess what's going on with her. ALZ is an awful illness to have, and its impact spreads throughout families and can wear them down to nubs.
At 71, it is not improbable that your Mom may also have something going on medically that requires a diagnosis and yet is treatable. People with depression are less able to help themselves. Living there will automatically assume you into the position of caregiving for 2 people. You're too young for that, and you're not obligated to do it. If I were in your shoes, I'd help my Mom so that she can get back to being her best self since the journey ahead for her will be very challenging.
I'm hoping your Mom and SF have their legal ducks in a row: they have assigned PoAs for themselves, at the very minimum. Hopefully SF has a PoA (maybe it's your Mom) and then a back-up listed (in case your Mom can't/won't perform the duties). Many on this forum may suggest you move out and move on -- and you should -- but if you love your Mom you probably won't be able to do this emotioally unless she is in a better state both mentally and physically.
I wish you much clarity, wisdom and peace in your heart as you sort through how to best help those you love.
It may stir up all sorts of feelings but asking "Are You OK?" to everyone in the household could be a start.
Everyone getting a say & also being heard - about what is working well for them & also what isn't.
Then to start sorting out what needs to change, how to find out how to do this & who can help.
If you like, bounce some specfic issues that are not working for you here first.
If there are many small daily issues, go big. Where do you want to be living for starters, now? Next year?