I think I need professional help. What type of professional do I look for that can help me deal with being the care taker of my parents with dementia? Today I go take care of my parents and the anxiety I feel each day is unbelievable. It happens every morning that I go help them and even when I don't have to go. I shake so uncontrollably..that it scares me driving the hour to reach them. I never know what I'm going to face when I get there. Either a great deal of poop of my moms to clean off her and everything she sat on, or my dad forgetting an important discussion or just forgetting simple but important things. They refuse to move to assisted living or memory care. I always had my dad help me with my mom and her dementia. Esp her refusal to take a shower or use the toilet. It's a battle to get her to do either of those things. I don't understand why the toilet is the enemy to her...other than it's the part of her brain that reasons wrong from right that is affected by her dementia. She would prefer to go in her depends.
My dad's memory has gotten progressively worse over the past 2 months and it's happening fast!! So now I have both of them to care for. I am losing myself and so filled with anxiety that other than taking care of them, I cannot function. They finally agreed to some home care and I thought things would be easier for me. It's not. I am coordinating home care, physical therapy for my mom before she becomes confined to a wheelchair or bed. Wound care for her foot. Got a paramedic group in their county to come out and give my mom her first covid shot. I have a repairman coming to fix their washer today. I am on the phone constantly when I'm not with them. I worry about them all the time!!! I can't stop!!! Now I'm having trouble convincing myself to shower and my home needs cleaning so bad. I feel like any minute something bad is going to happen to them. I feel as though my life will consist of taking care of them, then my step mom and finally then I will die. That's all that's left for me. I don't enjoy anything that I used to and don't want to even leave my house if I can avoid it. I myself am on disability because of half a dozen autoimmune diseases. I am not an only child. My sister lives 10 min from them but doesn't help at all. She set her boundaries early on and has stuck to them. My step brother lives in another state and even though he is 65, has the mind of a 16 year old. He wants to come home but no one but my sister ( his half sister) has room for him. She set her boundaries on him a very long time ago and wants nothing to do with him. I'm the only one that has helped him and kept in touch with him for over 40 years. I've had a sister die of suicide, a brother die of Hep C and liver failure. My biological dad passed immediately following heart surgery. My step mom is wonderful and wants me to visit but I don't have myself together enough to make the 4 hour drive. I'd be miserable company as well. I need help. I am on antidepressants and only buspar for anxiety. That doesn't touch it. My psychiatrist has been the same for the past 30 years and I feel like he doesn't hear me anymore. What type of therapist should I see that can dive deep into my situation right away and help me help my parents and myself??? I thank anyone in advance that can help me in this situation where there is no happiness to be seen anytime in the future.
Here’s my advice- take the steps to get your folks into full time care. You will be no good to anyone if you’re this down. They might not like it at first, but you are not equipped to deal with this amount of physical and emotional care. Change is hard, especially as we get older. They are resisting maybe because it’s change. After settling in to a routine at assisted living, they might be very relieved. They might make friends, have activities, connect with others their age. Right now, you are it. And you do not have to bear the weight alone. I feel for you that you can’t rely on your siblings. It sucks. But you need to save yourself. Look into it, give yourself permission to let go. Good luck to you, you’re a great person who cares. You deserve a life.
Think about it. They have a cook, cleaner, driver, care coordinator, company. All for free.
Old age sure ain't for sissies as someone once said. Or their families I'd like to add!
CJLC, what is your top priority today?
Stopping that awful anxiety? The folks agreeing to move? Learning how to set better boundaries? Or something completely different?
Just my silly way to put things... The folks are doing the 'living' but the OP is providing the 'assistance'. The OP is running an AL for 2 people.
My relative has set up a similar sitution. So much support underpinning so-called independence that if the carer gets ill.. *insert crises emoji*. I think of it as a House of Cards, holding until a bottom card is pulled out. Whoosh, down it goes.
And now *how* to do it:
If you are your parent's PoA, you must read the document to see if your authority to make decisions on their behalf is springing (requiring medical diagnosis of incapacity) or durable (does not require medical diagnosis). If they it is springing you will need to do whatever it takes to get them in to see their doctor for the cognitive exam, even if you must tell the a "therapeutic fib", like Social Security now requires an annual exam to confirm your receive of monthly benefits. This is not immoral or unethical because it is for their benefit moving forward. Hopefully your sister will help get this done. If your PoA is durable you can begin to make decisions for them regardless if they "like it" or are cooperative. Again, you can create a therapeutic fib to get them out of the house ("There's a gas leak. There are termites and you have to move while the whole house is treated." whatever). Hire a downsizing service and pay for it with their money.
If no one is their PoA, then you can pursue guardianship through the courts (but this is very expensive even to gain it for 1 person, no less 2). Therefore your only other realistic option is to call APS and report them as vulnerable adults. They will do a wellness check and will move to gain guardianship and will take over their care and protection. They will move them to a facility (and nowadays newer facilities are quite nice and well managed).
In the meantime, if one of them requires a call to 911 or trip to the hospital, make sure the staff understands in no uncertain terms that they are an "unsafe discharge" and there's no one to care for them in the home. The hospital often gets very persistent and aggressive in hounding family members to retrieve patients. In my personal case the Sheriff dropped off my step FIL at his house at night and threatened me because I wouldn't go get him. Ignore all threats and make sure all other family members know to NOT go get them. You can talk to a hospital social worker to begin the process and get them to be discharged directly into a facility.
For the time being you can call social services to discuss getting an in-home needs assessment to see if they qualify for county-funded services to help with the care burden. If they need Medicaid to go into a facility, you and your sister can fill out the app for each of them, it's not that complicated but you will need access to financial information like banking and investment statements, their ss numbers, etc.
I know it feels so overwhelming but just try to eat the elephant one bite at a time, even if you just make tiny progress each day. Eventually they will be resettled and you'll have your life and peace back. Wishing you speedy and full success in moving forward!
I am so sorry for all you are going through and having to go it alone is so hard.
If you are explaining these things to your psychiatrist and he isn’t hearing you or changing your meds then I think maybe you need to reach out to a new one as you have said “your meds are not working”. Though some 15 years ago I had severe anxiety and I did need talk therapy and it did help along with meds (I was on meds for about 2 years). Sometimes things just need to be tweaked while you start working with talk therapy and can find a better balance for your own mental health.
You have so much on your plate and caregiving for anyone including family and loved ones brings on feelings of anxiety and depression but when they become daily and hourly the best thing to do is exactly what your doing and reaching out for help.
Maybe you could also speak with a social worker and or the Council on Aging in your parents area (it’s seems like you have home health right now and they could request a social worker for you) that may be able to offer you additional resources or just guide you in making more decisions going ahead.
Take some deep breaths today and take one step at a time. Maybe Requesting a social worker or making the phone call for yourself for a talk therapist. One day and one moment at a time.
What you are living is so difficult - I hope you feel like you just made step one in this long journey and give yourself credit for doing so. Keep coming back here and know you are not alone 🌷
How much in-home help do they get? In the past, that help didn't last because your mother refused to allow it.
What happens if you can't take care of them?
You are currently propping them up by doing all that you do.
As long as they are both no longer decisional you can place them in Memory Care, they can remain together.
You do need to find another therapist and I am surprised that he/she has not suggested this to you. They should know when they are no longer effective in or with their treatment. Ask your therapist for a recommendation to a colleague that might be better equipped to help you. Or ask your GP for a recommendation.
One of the important things that caregivers need to learn, and a difficult thing is BOUNDARIES your sister has the right idea. You can still be involved but let someone else do the majority of the work.
Your parents care has gotten way beyond what any child could endure without the help of professionals in a care setting, and you know that, so I hope and pray that you'll take the necessary steps to get them placed ASAP.
You do not want to be in that statistics where the caregiver dies before the ones being cared for do you?
And if you've been seeing the same therapist for the last 30 years, and they still haven't helped you, then it's way past time to cut your losses, and move on to someone different. It would be helpful too, if you could get plugged in to a local caregiver support group. Try Googling to see if there is one in your area. My support group saved my life when I was at my wits end while caring for my husband.
We all have our breaking points, and it sounds like you have passed yours. Please take care of yourself. You probably need to put on a different antidepressant as well, as the one you're on obviously isn't working anymore.
You deserve to find happiness and joy again in your life, and my prayer is that with God's help you will.
You have two options here. Either find a nursing home for them to be placed in or move in 24-hour live-in caregivers.
Then take a ride over to your sister's house who's five minutes away and tell her she can take her boundaries and stick them where the sun doesn't shine. Say the same to your brother too.
Let them both know that since they do absolutely nothing and won't act on mom and dad's behalf that you will have to. This means they're going to a nursing home. If brother and sister are worried about possible inheritance, well they can take over mom and dad's care themselves.
If you do not have POA you need to seek Guardianship. Or talk to an Elder Care Attorney and say that you are not able to care for them and that they need a Guardian and the Court will appoint one and their care will be managed by someone else. The draw back to this is you will have no say in where they are placed nor will you have a say in their medical care.
He's been a good soldier on the staying in place campaign. Now he's breaking down and the strain is going to kill him. So scrub Plan A, forget it, and visualise a Plan B where they are together in the right choice of facility, with no burdens to bear and no responsibilities and no more fighting to stay put. Just the right level of support for their needs and each other's company, and a child who isn't approaching a state of trauma when s/he (?) comes to visit them regularly.
Forget happiness, forget waiting for everyone to die and paradise in the next life - there are people who can help you make something better happen soon, step by step. Interested? You can do therapy later.
As for your parents, it seems they may have reached the point where they both need to reside in a memory care unit. Talk to your stepmom and siblings about this. Ask if any of them will help. If not, call adult protective services or the police and ask them to help your parents with placement. You can visit them regularly once you have met your own health needs.
Now, regarding your wellbeing:
I fight anxiety and depression every day now that Mom moved in with us. It's so stressful on all levels. I sought a psychiatrist that I talk to 1x month and she prescribes meds. Imo, you need a different psychiatrist. Top priority is that you find one who will do more than just scribe meds and pawn you off on a psychologist. Your life will be easier dealing with one dr for your mental health.
Next, remember and repeat to yourself daily - one small bite, one small step. For now, stop looking at the big picture - it's too overwhelming. Compartmentalize and take it in pieces. Also, make little changes in your routine to make your life beautiful because life IS beautiful, and we can glimpse that when we choose to come up for air. Right now you are drowning. Pause and come up for air. No one is going to die or fall apart if you take a moment here and there for yourself. You have to believe this and make yourself stop to take these moments for yourself. I love driving, and I make my drive time enjoyable in different ways - listening to my favorite music, sometimes blaring it to drown out my thoughts. Sometimes it's Christian music, sometimes it's rock, sometimes it's Enya or throwback to my teen years. Whatever it is, it helps me get on touch with ME. What do you enjoy? The scenic route? goings to a park, petting puppies, watching a movie, meetinga friend for a good cup of coffee? Fill your moments when you're not AT mom and dad's with the little things that please you. The point is quality over quantity. Start small and build these moments into your daily routine.
As far as the scheduling and demand on your time, it won't stop altogether, even if you move them to memory care. So, get a separate calendar book that works for you but is just for your parents. Don't mix your personal things and doings with theirs. On your calendar, just put M&D so you know to check their book.
If appts aren't convenient for YOU, then tell the people/Homehealth/drs/etc. what is convenient for you with a simple "that doesn't work, but this day and time works." Don't let others schedule your life, esp Mom and Dad; there's no control for you.
idk your parents' financial situ or your relationship with your sister. If finances are good and sustainable, then hire private aides to supplement what care insurance provides and, most importantly, to take some of the yoke off of you. Mom & Dad pay for this - not you!
If your relationship with Sis is good to fair, then go see her and sit down with her and say I know you set boundaries and I need your help setting some myself and your help filling out this paperwork (whatever is needed) at this time to get your parents situated. If she won't help you do that, then dust your sandals as you leave her house and look for a social worker to help you. Ask your psychiatrist for info about a social worker and leads on services. My psychiatrist is more than willing to point me to any help that will help me short term and long term.
(Will continue)
You must, for your mental and physical wellbeing, figure out what works for you to take back control of your life. I'm a list maker spreadsheet girl. I have a 5x7 blank hardcover notebook that I call my book of life. I write everything in it, esp important info. No order. Just start on page one and keep going; new thought/next page. I keep it with me like I do my wallet. I always know where it is. Maybe that will be a good thing for you. It's my eyes only also. I write all kinds of things in it from my standard and favorite menu items to order takeout to ids and pws to dr notes to random thoughts. I clip a few pictures of my family in it too - the ones that make me smile.
Another coping thing I do is set alarms on my phone throughout the day. Some are odd times, like 8:40am or 1:30pm. Others are 11am, 3pm and 9pm. Just times I'd like to know what time it is. (I don't wear a watch anymore because I was always checking it and stressing about the time.) But the great thing about the alarms is I loaded my favorite songs on my phone and use them as the alarm sounds and I have the voice thing announce the time out loud. Some are silly tunes, others are soothing, still others are invigorating. Little things that bring me joy during these days.
Make moments for yourself throughout the day, every day.
I hope you have a friend who's been through this and that can encourage you, listen to you, advise you and just be there for you - and you can reciprocate. My old college roommate is that person for me. We talk on the phone all the time. We cry, we laugh, we commiserate, we sooth and solve or just remain bewildered together. The greatest thing she's done for me is give me permission to be a bit selfish and not feel guilty when I think I should be doing better or when I rant about Mom or life or whatever. Most times, I think we caregivers need someone to just tell us it's ok and good to put ourselves first. It doesn't mean we love anyone less. We have to love ourselves too.
It's good that you realize you're in a funk and muddled. I'm glad you were brave to reach out. Keep reaching. You're not alone, no matter how alone you feel.
I hope this helps you point your feet in a new direction, one step at a time, one day at a time.
Countrymouses's excellent description got me thinking...
CJLC you have been an excellent soldier too. But like in any battle, the front can move, troops have to be withdrawn & redeployed elsewhere. With good communication, messages get through to change course in time.
I feel like depression & anxiety are the messengers here. Depression to pause, stop. Anxiety to warn of danger. The danger to your health is real.
Therapy may be a great help but right now, boots on the ground help is needed.
Could a phone call to your Sister help? Tell her plain "it's time for a new plan. Can you help me with it?"
Oh my gosh, I read this and I am reminded of the mayhem that I had in my life. Your situation is tough. I am not diminishing your pain whatsoever, but let me say that I took it to a new level and I admit that as good as my intentions were, I didn’t make the best decisions.
I did the same as you, back and forth to my parents home. I was the primary caregiver for them. Daddy died. I then continued going back to care for mom. Then Katrina hit. Mom lost her home and moved in with me. I wish I had realized how much that it would impact my life having my mom live in our home. It was fine in the beginning, but as a parent’s needs change, the demands grow. It’s hard, and is indeed very depressing!
I also cared for my brother who had hepC. I had to stop caring for him because I was stretching myself too thinly already with caring for my mom, and being a wife and mother. He died in a hospice house.
I have more than one suicide in my family. My niece, nephew and three cousins have committed suicide. I feel your pain, it is devastating! I am so sorry for your loss of your dad and brother.
I came to this forum because a social worker suggested it for me. It has been a great comfort for me. I also did therapy and an in person support group. All were helpful. It’s work. It’s about developing a healthy attitude and desiring positive changes in our life. It’s about truly looking at our behavior. It’s about listening to others viewpoints.
Life can be more than just surviving. It took me a long time to figure that out. My energy was completely depleted. My stress level became so bad that my blood pressure rose so high that my doctor sent me for heart tests. I can’t tell you how many times my doctor was upset with me for not eating. I physically couldn’t eat. I had no appetite! Some people eat more when stressed. Others like me, cannot eat if they stressed out. I hated when people asked me if I was sick because I am so thin. If I forced myself to eat, I would throw up, so what was the point of eating?
I had mom for 15 years. My brother and sister in law took her in for about a year and a half. Mom spent the last month of her life in a hospice house where she died peacefully. She died in April at age 95. She was sorry that it was a hardship for us.
I loved her dearly but sometimes facility care is best all around. I wish that I hadn’t felt that I would have been ‘less than’ by allowing others to do the ‘hands on’ care. I can see now how I actually set my mom up for her dependence upon me. Hindsight is 20/20! Please learn from others who made awful mistakes and wish that we hadn’t.
Wishing you peace as you navigate your way through this difficult time in your life. Take care.
I know that feeling of - this is all there is for the rest of my life and then I will die. If someone talked to me about the future, going on a trip etc... I was just confused, did they not know my life was over? .. and it hasn't been even remotely as bad as it is for me as it has been for you.
It is really hard to find your way out of this when you feel like you do but you must try. Find a professional to help you organise their care, Speak to their doctor and find help getting POA. They need to be in a care home, No therapist can make this somehow bearable to you when it is clearly not. Fix their living arrangement and then find a new therapist to focus on self-care for yourself.
I am so sorry you are going through this but please fight for your own life.
I would also talk to an elder lawyer about guardianship or (in UK) Court of Protection intervention. And how you can get control to have your parents moved to a facility or the State being able to do so.
if you have no one else to talk to,, then it might help you time have a Therapist lend an ear..
seems to me #1 to help with the anxiety, have a few Cameras installed in the house so you can check on them any time 24 7 wuth your Cell or computer.
I have a 97 yr old Dad with Dementia and he needs 24 7 Care.
I had my son install Nest Cameras which are easy to install.
He had money saved up so I let my siblings know that Dad wanted to stay in his own home and not go to a Nursing Home so there wouldn't be an inheritance, all Dad's money was going to hiring 24 7 Caregivers and that's what I did.
I also decided to start ordering his groceries on line and have them delivered so much time saving and backsaving then to go do the shopping myself and lug the bags in and out of my car.
The Cameras give my mind ease since I can tune in to see how he's doing and make sure the Caregivers are treating him OK.
I have him on Home Health Care that his Insurance pays for and they send a Nurse out to check on him and check his vital signs as needed from once a week to once a month.
Also an Aide will come 2-3 times a week to give a shower/bath or in his case, they give him a bed bath since he can no longer get in the tub or shower.
They will also send out Therapist a couple times a week.
If your Dad is a Miltary man, he can call the VA and get signed up for some Caregiver help up to 30 hrs a week. Depending on how bad his condition is.
If your parents have the money then set up the Insurance Paid Home Health and have your parents pay for a Caregiver coming in a few hours every day or a couple hrs in the morning and a couple in the afternoon.
It's always best to be able to stay in your own home as long as you can.
With the Caregiver help and the camera, it's a lot better and I go see my Dad once or twice a week and bring him a shake, give him a foot massage and once a month give him a manicure and pedi.
We enjoy our visits but of course with Dementia, he forgets I was there almost as soon as I leave. But, I know he was happy while I was there and that's what counts.
Nusing Homes are not fun and always understaffed and if the patient gives any trouble whatsoever, they are given meds and telling you it's to kerp them calm or they are depressed, ect ect and they end up like a Zombie.
Prayers
Looking back, I realize I should have moved him earlier. My mother was so physically run down, she couldn’t even leave the house to visit him for 2 weeks. Of course, she still insisted that she could care for him.
While Dad was in MC, he often asked me when he could go home but I came to understand that he was usually referring to his boyhood home, not the home he shared with my mom for 65 years. He was content at the MC facility, sometimes even happy.
My mom and I have developed a better relationship now even though she also had to leave her home after a series of falls.
You have some really great advice in this forum. I’m so glad you found it!
Prayers, hugs, and best wishes for you!
I think you know what you need to do and I hope you have found the support you need from this site to help you make that decision and take those necessary steps. Sending caring thoughts and hugs to you.
sorry your siblings are of no help so basically you’ve taken this all on as though you’re not allowed to have boundaries. Well guess what …you are!
40% of care givers die before the care receiver. If you don’t have POA, then yes you need to get with an elder care attorney and go through the process of guardianship in order to get them in a facility. Find a good social working through area wide agency on aging and get their advice. What would happen if you died? Who would handle all you do? You Must turn this around.