My mom has early dementia, I can’t keep going to her house every two weeks for two weeks. I hate leaving my own family, but she needs me. We tried in home care but they keep calling in sick, Covid is everywhere. I don’t want to put her in a facility yet because she is just a bit forgetful and I would rather wait till it progresses further. So how much of a change is it?
If you move her into your home, you will lose your freedom to do something as simple as go to the store. You will lose your privacy. You don't mention if you are married, but it takes a toll on a marriage. It is mentally, physically and financially draining. If you have other options, choose them.
The thing is ....you don't know what symptoms are going to manifest. As she worsens, is she going to be up all night and try to get out of the house while you are asleep? Is she going to turn the stove top on and start a fire? Is she going to become incontinent and soil all of your furniture? What if you become ill and need a surgery...where would she go? It changes things drastically.
Think long and hard about this because who she is today is not who she will be in a year. There is no reasoning with dementia.. My mom doesn't understand how to flush the toilet or turn the door knob of the bathroom door to get out. She starts pounding on the wall for someone to help her. They become someone you don't recognize. It's not easy. Don't do it....
My mom has ladies that she talks to and eats lunch with at her memory care facility. She can't remember their names or what they talk about, but it is socialization on her level. I would recommend that you point your mom in that direction.
Then she needed a Wheelchair. Now she's bed-bound and needs a stretcher and an ambulance to go places. Plus incontinence has arrived, also. Plus, I have to bathe her, feed her, etc now. And, generally worry about her all the time. At least I don't have to worry about her falling anymore, though. But, there are many other worries.
This situation may start out just fine, but it will become harder over time until you are in way over your head and desperate for a way out. At some point of time in the future there will be much lifting and much expense for supplies. Not to mention, endless worries and lack of sleep do to incontinence needs during the night and also when she calls out during the night, waking you up.
In a nutshell: Be prepared for the situation to start out fine - and then, over time - become more physically & mentally difficult than you could ever imagine.
There are no days off. No vacations. No sick days for you unless your Mom or you have the finances to pay for a replacement Caregiver, or a family member that will step in. We do not, and that is quite difficult for me to not ever have a day off. Ever.
We failed my Mum, she moved from house to independent living then to assisted living (one month stay) then to memory care. She should have gone straight to assisted living and she would have learned the routines to be able to stay there longer.
Do NOT bring her to your house. One worn out person caring for her is not sufficient for her future needs.
The initial period worked ok, as she had an expense free life in our home and could pay off her debts. We gifted her some funds and with that, her social security and my dad's annuity checks in time she was able to get out of hock and actually save up a bit but her non-stop gambling was still there. The gambling was the route cause of all the debt. But like with a alcoholic, one addicted to gambling cannot start recovery until they recognize they have a problem. And that recognition never came into place.
Later the mental, cognitive and physical decline happened. She refused to do anything to help herself. We redid her bathroom to be safer, grab bars, no lip walk in shower, structured shower seat, hand held shower device, higher/taller toilet, even the toilet tissue holder was a structured brag bar. She had a private bed/bath suite on the first floor of our home, no stairs to negotiate, huge room (20 by 25 feet).
But the cognitive decline (later given a clear dementia diagnosis) was just impossible. And physically, she could barely walk but refused to use a walker. She would not leave her room, TV blaring 24/7 as refused hearing aids. Every meal eaten in her bed. Eating nothing but junk food and not eating home good home cooked food (made by me) because she'd rant at me "you cooked it in your dirty oven, so I am not eating it." (PS my oven is not dirty.)
The outbursts were awful, allegations "you stole X, Y Z." Forgetting what conditions she had and refusal to take her Rx med or mixing them up (no, would NOT allow me to take them/manage them as that just caused another outburst). Up all night, no one could sleep. Wandering in the house at 3 am, setting off the alarm when she tried to open the door. How many times did I have to call the police and say, "NO false alarm we are ok no need to send officers" (our county police dept charges one for too many false alarms on your home alarm system - yikes). She was unable to do anything. Just trying to get her into a car to take her to her various doctor apts was a two-person task. And the now awareness made basic hygiene hard. I was only allowed to change the sheets on her bed 2 freaking times in nine months, and she has incontinence. Can you imagine. But changing the sheets would have required her to get out of the stinking bed, so that would have been an utter meltdown. I left the stinking bed, stink.
A bad fall, landed her in the hospital for 2 weeks, with a discharge to Rehab and from there (same facility/same nursing home -- NH -- I did all my homework before) she is now a permanent resident in their long term care facility and finally after 8 month of spending down, she is on Medicaid long term care.
After 16 months at the NH she has not acclimated, the awful outbursts continue so I have had to go "no contact" for my own mental health. Her healthcare team is great (board certified geriatrician, geriatric psychiatrist and neurologist on staff there, and wonderful RNs, nurses and aides who I just could hug them all). All other medical stuff handled right there, even the podiatrists comes by every 8 weeks or so. OMG I was having to handle all that too at home, trying to do proper foot care/nail clipping w/her screaming and kicking me; she is also diabetic so proper foot care is very important.
It will take me years to get over this. Yes, I have a great therapist.
DO NOT MOVE HER INTO YOUR HOUSE!
what a wonderful daughter you are!
She had a lot of changes, new doctors, city, new PSW workers, cleaners, etc. This took several months to get sorted out. She lost access to her friends in the previous city, they were going out less often and she was not going to her clubs, so I think this was going to happen whether she moved or not.
Living in our house and we had to make a lot of changes, structure, access, floors. This took more than a year. She needed to have a space where she can live with us, but be her own and it needed to be safe for her, safe space was a big job and expense.
The PSW problem is the same regardless of either location, I switched companies to someone who was more reliable, when one was off, they could send a replacement.
Boundaries and rules need to be clear for everyone living in the house and everyone needs to show respect. In some cases, that means that we do not have guests over. If one of the family inside is ill, we have to isolate ourselves as there is a person living in the house that is vulnerable.
There were pros and cons in both cases, moving is a big decision and a change, but not unsurmountable. In our case, she moved from an apartment to our house and now had access to a garden and a yard, this was a good change for her, and she started to walk and excersise more.
You want to know if you should move your mother in with you? Can't you see that you have answered your own question in your profile?
Interesting that your siblings do absolutely nothing. Why did YOU step up? Now you've done your time (5 years). Don't you deserve the freedom your siblings have? And what about your family????
My mother moved in with me & my husband 31 years ago. It was fine she was able to live her own life, except she was needy always around all our vacations she came along, all our events, dinners etc. the past 5 years was when I became her prisoner/slave. As I explained you can’t leave! It did get better she had LBD, she lost her balance and ability to walk, but she wouldn’t accept this fact and kept getting up & falling that’s why I could not leave to even do a grocery shopping. But as her disease progressed she came to realize she couldn’t get up, and she had no strength to do so. It was still hard but I didn’t worry as much about her falling, but it was harder she couldn’t dress, toilet, get her meals, bathe etc. that’s when the slave part came in. I did love her but I was tired! And her mind she no longer knew who I was. At the end was basically taking care of a body in a bed. She eventually couldn’t eat, not even very loose hot cereal. Or puddings etc. I was spoon feeding her liquids, then she refused all liquids. That was the end. It was expected but 31 years is a long long time and before I have my freedom again.
31 years :( :( :(.
"But as her disease progressed she came to realize she couldn’t get up, and she had no strength to do so. It was still hard but I didn’t worry as much about her falling, but it was harder she couldn’t dress, toilet, get her meals, bathe etc. -------- that’s when the slave part came in."
:( :( :(
hugs!!!
Grandma and Grandpa Walton lived with Mama and Daddy and all the kids. Everyone was happy with this arrangement. They were all generally happy with this arrangement. You'd see them all gathered around the radio. What a happy home.
I pictured that when my mother moved in.
It was the exact opposite.
Nobody shows Dementia on TV.
Six weeks of h----, and at the end, I was bedridden from the stress.
Read, read, read about burnout on this site, before you make your decision.
Best wishes to you.
Pragmatism calls for immediate placement, but humanity gives credence to giving of yourself - Which is right? Only your heart can decide what you choose to live with (until you can't).
4 years of sacrifice is an awful lot... right now; but how will you look back on it all in 10, 15, or 20 years hence?
Knowing what I know now, I think I actually would be silly enough to do it all again, despite the anguish - I'd just like to be better trained...
If you move her in (even if you don't) PLEASE! Get your paperwork in order! POA (medical and financial...even with a diagnosis of dementia it doesn't preclude her being able to assign POA if it hasn't advanced too far) Advance directives, Will. Insurance beneficiaries, Insurance medical and auto, arranging for when you take the car away, What is going to happen to her home, access to bank accounts or not, TOD for bank accounts or investment, etc etc etc
Instead of her having all your time every two weeks, she will have to share you with your family every day.
You will feel you are ignoring someone all the time. Much as you probably feel now.
She will have a hard transition now and another when you realize how hard it is for everyone and you decide to place her. Hopefully there will be some good times in between.
I am sorry to be so negative. It isn’t easy being you right now. I wish you all the best and an easy landing.