I see people who have been doing this for years and decades and I’ve only been caring for my mom for 7 days and I’m ready to call it quits and get her a nurse for 8 to 12 hours.
A little backstory: my 67-year-old mom had a brain aneurysm on may 12. She was in the hospital and a rehab facility for 76 days.
It’s just my 68-year old dad (who is in poor health himself) and me doing everything.
Her memory and cognitive skills have gone down hill since coming home. She doesn’t know what day it is, or have a grasp on time of day. She is unable to regulate her body temperature because of a uti that is resistant to antibiotics and while in the hospital and rehab she was not on her thyroid meds.
I know my dad is in denial that she needs help that we just can’t properly provide.
Any suggestions are greatly appreciated.
Call her doctor first thing.
I have 2 lo's in homes, one AL the other MC, both have their own apartments, activities, well fed and have made new friends.
I wouldn't get in any deeper, set the stage now. Take care of you!
When my Dad first came home from the hospital, he was delirious, confused, stared at a wall for days. I insisted they check for a UTI and he actually had a very bad (staph) infection! It took several weeks for him to regain any mental clarity.
So perhaps it could get better, but it would take some time, and maybe she could be placed somewhere for a while and then reassess?
With regard to thermal regulation, is her body capable of sustaining a constant temperature between say 95.5 and 99 degrees? Does her body temp fluctuate, or does she feel colder and or warmer than most ppl?
If she doesn't like it, she'll have to get over it.
Your current situation is not sustainable. What probably should have happened is that she went directly to a LTC facility when rehab ended.
Are you living with your parents fulltime now? Do you have siblings? If so, how did it happen that YOU were the one who became the caregiver? And, let's face it, you have suddenly become the caregiver to TWO people.
What is your parents' financial situation? Can they afford the kind of expense that 8-12 hours/day of help will be?
It will get more difficult for your dad, and you to care for her.
Is Assisted Living a possibility for both of them?
Your dad would have the help of professional staff when he needs it.
If the AL facility has Memory Care mom could transition there when her cognitive skills decline to the point where AL is no longer safe for her. (this may or may not happen)
The other option is to hire caregivers that will come into the home and help out.
Even 2 or 3 days a week for 5, 6 or 7 hours would be a great help for both of you.
Not to frighten you with a statistic but there have been studies that indicate that a good portion of caregivers die before the person they are caring for. This just indicates the amount of pressure and stress that caregivers are under, and if your dad's health is not great now it will not remain static as his caregiving duties increase. He should inform his doctors as to what is going on so they are aware and can monitor any declines in his health.
One thing that you and your did might want to contemplate is at what point will you no longer be able to manage.
I based my "line in the sand" to 1 thing.
SAFETY.
I said I would keep my Husband at home as long as it was safe.
If it was no longer safe for HIM for me to care for him at home I would have had to place him in Memory Care.
If it was no longer safe for Me to care for him at home I would have had to place him in Memory Care .
Safety to me is not just physical safety but mental/emotional as well.
Your mom is very young and caring for her could go on for another 20, 30 years.
You can not put your life on hold for that length of time and I am sure your parents would not want you to. And it does not sound like your dad could sustain his caregiver role for that time either.
If your dad has not yet a consult with an Elder Care Attorney would be a wise appointment to make.
What's that order again?
Denial, anger, acceptance?
It's loving to step in to help.
It's wise to take a little time to look properly at what you stepped into.
It's practical to then change the plan as needed. Then keep changing as the weeks & months go by.
You & Dad will move from an initial emergency response to a more robust & sustainable care plan. Strength to you for the process.
you are overwhelmed and things have not began yet . You mean well because it is mom and dad . But where is your life .
having both is a huge responsibility and dad still has the capacity, but is it worth how you are feeling. What happens when dad loses that .
you need to speak to an elder attorney and her doctor should get involved. Granted as soon as you left the facility .. hands were dusted . You need to seek legal advice .
question. By doing this you have done the most brilliant thing to
help yourself, your mom and your dad.
The advice you get here is invaluable.
I commiserate with you in finding yourself in this situation.
What I can do is give you a hug and say through this changing
story to make sure, starting now, to take care of yourself.
Make time to get out and see your friends. Have some fun.
Treat yourself. Make it happen from now on- because so quickly
things can become overwhelming and you can get totally swept up into it.
Sending love to you all.
I am sorry this has happened to your mom at such a young age. Your dad has not come to the realization yet that this is her reality and not going anywhere. He may need some time to process this.
I agree with others who have stated that your mom had no business coming home. She needs serious care. Care your dad is unable to give her and care you aren't going to be able to give her unless you give up your own life, which I do not suggest you do.
I would give dad another week and then have a heart to heart conversation with him. Call the hospital back and ask to speak to a social worker. Explain that mom was released to go home, but there is not enough care there. If they refuse to help you, tell them you will be bringing her back to the ER then.
Stay strong. This is hard and scary and you and your dad are going to need each other while making decisions for mom.
Is your mother cold? I had to buy a small space heater and an electric blanket for my mother she was so cold all the time. I felt so bad for her and I'm hot-natured. It was fun around here to be sure. 😊🤔
Maybe a clock with a calendar that changes itself daily. Hahaha
Some family pictures close to her bedside may help as well. Gosh, I don't even know if they make something like that clock/calendar thing anymore. I'm showing my age. Lol But do take care of yourself. It can be a daunting task so take any break you can.
I couldn't, so trust me you absolutely have to take a break every chance you can.
Estrogen therapy has been used to lessen or eliminate UTIs. If you can afford tablets, it’s the easiest method. Mark Cuban’s online pharmacy is well worth price shopping even though they don’t take insurance.
surprised that hasn’t happened already. I think you are spot on for worrying about your well-being in this role. You are much too young and so are your parents to have to go through such a life-changing situation. Whatever route you decide upon, just know it’s expensive and caregivers and facilities are not the same caliber they used to be. You can spend hours trying to schedule something and then hours correcting what wasn’t done. I think you should have your dad make a will, give you POA for medical needs and financial needs for both your parents. Your parents’ Social Security will offset some of the costs. Plus, they might have a 401k that will help with costs. Whether to move your mom to a skilled nursing facility and your dad to assisted living on the same campus or to pay for in-home care is a big decision. I think your mom definitely will need a facility. Even if you move them into a facility, you will still have caregiving. These facilities don’t provide toiletries. I think you also need to think about your well-being and trust me, you providing most of the care cannot be an option for you. Caregiving at any level is hard. It’s draining on every part of you. I recommend placing both your parents in a facility that meets their individual needs so that trained professionals can care for them. You need to set your boundaries now as the daughter, not the caregiver.
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Please call the senior care specialist on the right of this page or A Place For Mom to get help in placing them appropriately. Adult Protective Services can be called for an evaluation on both parents to figure it all out.
It is beneficial to make a group appointment with a Geriatric Psychiatrist and an Elder Law Attorney who can advise on options and strategies for financial issues.
How about looking at a nice AL facility for both of your parents (if they can afford)? Hire the private nurse to make regular weekly visits to monitor them and their health conditions. Even use some of what you would have paid for 10 and 12 hour a day nursing care to hire a CNA to help them in the AL a few hours a day.
Both parents home with you and both of them with serious health conditions, that's too much for anybody.
Your mother has underlying medical conditions which must be treated by a doctor. Also, she MUST follow the regimen of the therapies if she wants to get better. Perhaps she is suffering from depression also which is keeping her from doing the exercises to make her get better and healthy. You need to speak to her doctor and explain the problems you are having with her.
Good luck.
Get her seen by a urologist of infectious disease doctor to address the UTI. She may need to give a urine sample for culture and sensitivity to find out which antibiotics work for her. Make sure she takes all her antibiotics as prescribed until they are gone.
Any person with brain injury does better in a consistent environment with a consistent routine. Create a daily and weekly routine that your mom can get used to following. Put up a large calendar to help her orient to day of the week, month and celebrations.
I agree with others finish the antibiotics, if it's the right one and a shot of cranberry juice each day in the morning, plenty of water.
Any type of Spalding Facility is good with brain injury. With docs permission how about homecare--Physical, Occupational and Speech Therapist. My mother was diagnosed with Lewy Body Dementia--two years ago she couldn't even put toothpaste on her toothbrush or comprehend how to sit down in a chair.
Fast forward two Summers' later Mom is getting dressed and helping to clear the breakfast dishes as I write you. This came with a lot of therapy and the right medication and specialists--perhaps a Geriatrician Neuro Psy doctor. Check out ALL of your mother's doctors' online through your State Medical Board. Any problems with them, move on to the next one.
Get on the portal--it's faster and you have access to your Mom's medical records/tests.
Next on the list--with a scrip from your Mom's PCP a day program respite with therapy services and an RN. You need RESPITE as a back up plan. Have a back up plan in place in case something turns up with you. Find a "Medical Model" respite program, even if it's once a week in the morning for four hours.
Hiring a nurse for Mom you have to be a Rockefeller. Some services are allowed upon a safe discharge with everything modified at home.
You have to get rid of the UTI-s (I recommend white cotton briefs, railings around the toilet--not the booster seat because you can't wipe as well and plenty of water--fluids). These UTI's can wreak havoc. You have to re-do the urine test and make sure it clears and that's how you find out your mother's "baseline". Baseline is what you have left for behavior after the UTI has cleared.
Don't give up...I was in your situation two years ago. It was an absolute nightmare but right now looking back with therapy, a structured routine, call on the Church people, neighbors, if your dad is a Veteran--check out the Veteran's Aid & Attendance, Mom is walking around but I am also going up against old age--she will be 84. By God's grace she rebounded with my prayers down on my knees.
Buy a copy online "Dementia Caregiver Guide" by Teepa Snow. Watch her videos on YouTube--an Occupational Therapist, deals with the brain. I was a sponge for any morsel of info to deal with the situation at hand.
Keep all receipts--know your insurance and have a paper trail (scrip) so you can get your durable medical equipment covered.
I hope I was of some help and you are all in my prayers. Later on this morning the Church people visit as they do each Sunday morning with Communion and a Church bulletin. They have never missed a week since this ordeal. If you are not part of a Church, I recommend you call a Pastor in your neighborhood and tell your story.
ps- this site is great for support (: I enjoy all people on here! They are all knowledgeable & extremely supportive!