New to caregiving. Any advice?

If it is very bad I would say get nursing help. A couple weeks ago my mom went to lay down, in the afternoon and knew she had to get up early in the morning for the tree guy coming at like 7 AM. She is 84. Woke up and thought it was 7 AM got dressed, brushed her teeth, and went on the computer, and realized it was 7 PM not AM. Heck I'm 56 and that has happened to me even 30 years ago, lol. And what day it is, come on, perfectly fine high functioning people forget what day it is sometimes. But the body temperature thing is serious no matter what.

Has her doctor ordered home health? A nurse to check vitals, OT, PT to come to the home? A home health Aide to bathe her.

Call her doctor first thing.

You and your dad doing the caregiving needs to be just a stopgap measure until you can get some help to care for your mother. It sounds like she needs someone with her 24 hours a day so you should plan to get help every day so that you and your dad can continue your lives. I'm assuming you are still working or have your own family to care for so you need to get things set up so that you are not a primary caregiver. I don't know how much care she actually needs other than supervision. If she just is in a situation where she can't be left alone but doesn't need lots of nursing care your dad should be able to do evenings and nights when they can watch tv and sleep and you can get someone in for the day shift and prepare the evening meal. Eventually, you'll get into a schedule that works but it may take some time. The transition from daughter to caregiver is hard and getting help is essential.

I would have a discussion with your father, tour homes and see what is available in your area.

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!

If you're feeling it 7 days in, that's a good sign that you really need to get out. Her needs are bigger than what you can provide care for. Don't feel bad about it. You tried! But she needs more care.
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?

My fil had an aneurysm, and we were told most meaningful progression occurs usually within 90 days. As far as moms cognition, you may be seeing the best of it.

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 possible, GET EXTRA HELP. That includes getting a nurse.

If she doesn't like it, she'll have to get over it.

Do not bring her into your home is the number 1 rule. It will destroy your relationship with her.

I love how cinderblock phrased it: "If you're feeling it 7 days in, that's a good sign that you really need to get out."

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?

This, I hate to say it, will continue to get worse for your mom.
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.

So sorry this happened to your Mom.

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.

She should have never transition to home . Her safety was the obvious choice and with traumatic brain injury .. she should have applied with help from a lawyer immediately to stay in the facility.
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 .

First thing -well done for finding this forum and asking your
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.

Get in some help at least for a few days for several hours. It will give you time to think, look into the elderly resources in their community, goes over finances, etc. Tell your Dad it is temporary while you get settled into the new schedule and to make sure your Mom gets the medical attention she needs while healing. Ask him for help, say you are overwhelmed and worried and an aide would help you cope. Then call your doctor and ask who might help, and the local community leader's office, an elder attorney if you can get a recommendation. If there is a senior day group near you, their leader should give you some leads, or a nursing home administrator. Good luck. You are overwhelmed; you might trek through by yourself but some help would make it easier. Guilt your Dad if necessary, you are his daughter, you should know how!

Hollie,

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.

You stated that she has a UTI resistant to antibiotics? Is she getting better? Does she get an antibiotic? A severe UTI can cause confusion. I would suggest contacting her doctor immediately and see if you can get a urine sample to get tested. There are iv antibiotics that can be given. If the UTI is under control, you may see marked improvement in Mom.

You have to make sure you take care of yourself through all of this. My mother had a constant UTI as well so her Dr put her on a mild antibiotic daily. That seemed to help for a while. Have you taken her to a Urologist? They might be able to help her with those UTI's. The problem my mother had was she wasn't able to empty her bladder fully and that caused her problems. Your mother may have a simple fix.
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.

My condolences. A friend walked this path and each step was painful.

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.

Hello, Congratulations on finding this site so soon in the caregiving process. I think your mom’s doctor needs to weigh in on what care your mom needs and I am
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.

There are several issues here, but I will just address one aspect of your post, since my father had a brain aneurysm at age 65. Think about the best your mom was before coming home. I would think she at least has the ability to get back to that point and probably better (after other issues are resolved). The change of coming home, change of routine and surroundings, is enough to throw someone's progress back so don't give up hope of what she level of progress she can make. I saw this with my Dad and he made great strides for months until other health problems arose. Also, no doctors addressed this specfically until asked, but depending on the part of the brain that was affected, depression can be an issue. My father benefited from antidepressants for a time.

Perhaps it's time to consider placing Mom and Dad in a facility that offers the care they need. If possible, they could live together or in separate housing at the same facility. You can be the happy visitor who brings comfort and joy.
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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.

What has been done about the thyroid meds?

You're talking about hiring a nurse 10 to 12 hours a day. That will be very expensive.
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.

Welcome to care giving. If there is anyway you can get out of it do so. In the end it is all about money but the cost you your own mental health and life are never part of the equation

Follow your own advice and get caregivers to come in and help while you and your father figure out if this is the best long term solution. It may be better for her to go to a memory care/skilled nursing facility where she can get 24/7 professional care. If you decide that a facility is best, try to find one close to you so that you and your father can visit often and oversee her care. I'm so sorry that you and your parents are having to deal with this catastrophic heath decline. All the best to you.

holliej: Welcome! Your mother requires a home health aide, which should have been ordered via her physician and/or hospital/rehabilitation facility. Also, her thyroid needs to be re-regulated to normal levels via her thyroid medication, which needs to be scripted/RX'd again if she is out of refills. Contact her primary care physician. She may require a TSH (thyroid-stimulating hormone) blood draw to determine what mcg (microgram) of thyroid medication she should be taking.

I had a brain aneurysm in February 2020. I was 67 years old with no underlying medical conditions like hypertension, diabetes, etc. I was healthy and on no medication except for multivitamin. I spent 5 days in the ICU and 2 weeks in rehab. During my time in rehab I had physical therapy, speech therapy, vocational therapy, etc. I made sure I followed the therapy regimen because I wanted to fully recover so I would not be dependent or be a burden to my children. During my second week in rehab I felt that I had recovered enough to be discharged to my home. The doctor in charge did not want to discharge me, but he eventually gave in and allowed me to go home. After my discharge, the physical therapists came to my home, but after the first week of them coming over I felt fully recovered and asked that they release me from care. I have, thank God, fully recovered 100% from this life-threatening illness.

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.

Start her back on her thyroid medication. Get her seen by her doctor for labs to make sure her levels stay therapeutic. Once her thyroid levels are therapeutic, she will have less temperature regulation issues.

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.

Good Morning,

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.

Welcome to the journey of caregiving. This is a road that will take you through emotional up & downs you never knew existed. Get the help you can and try to get it from consistent people. I had/have to pay out of pocket.I am waiting on approval from The government. Interview the caregivers!!!! That is a must. Understand this is a time you’ll never get back w/her. She is not the same mom but she is still your mom. Get second opinions. Thyroid problems are underlying causes for many things & once those are addressed, typically others (cognitive & emotional) are balanced. However,I do not deal with that situation(so I can’t really speak on it),I have been told by others who have experienced thyroid issues& taken meds for it &/ or cared for those under thyroid concerns. Wishing you luck
ps- this site is great for support (: I enjoy all people on here! They are all knowledgeable & extremely supportive!