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?
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...
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.
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!
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.
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!!!
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 has early on-set dementia and was diagnosed at the age of 55. By the time she moved in with me she had no money, no job, no car, or anything to help support here. Due to her age she had no social security and no place to live. Her fiancé was dying of lung cancer and he needed care as well. I had two small children at the time and we didn't realize the amount of care and struggle we were about to take on. At the time she moved in we knew she was having cognitive decline, but had not been diagnosed so it was early stages. She was in complete denial with her illness and that took a huge toll.
Her depression and anxiety became so much worse when she lived with us. Her behavior became erratic and dangerous. The arguments about why she shouldn't be driving (she had totaled her car earlier in the year), her lack of cleanliness and self-care was a lot. She would leave the house and try to hitch hike places she wanted to go or ask my neighbors to take her places. My husband and I worked full-time so she spent many hours home alone and we didn't have the money for in-home care. We had to hide our car keys, put a lock on our bedroom door to hide her sleeping pills (she would take too many and not realize it). She became aggressive with my kids because she didn't realize what she was doing. We had her on depression medication and dementia medication but it didn't help. Eventually she became manic and a harm to herself and others that we had to put her into a psychiatric facility and then into memory care. We just didn't realize what the right medication was for her at that time.
My kids felt the stress and changes a lot. They also started to become anxious and had issues at school. My husband and I were fighting a lot and it really took a toll on our marriage. There are many people on this site who do take on full-time care giving and while there are many struggles there are some great memories that they build. However, their life becomes your life. You mentioned having a family so I'm assuming you have a spouse and kids. You have to weigh how much you are willing to give up to take on this responsibility. It will for sure change your lifestyle and have a impact. Keep in mind you can still have a relationship with your mom even if she lives in a facility. My mom's depression improved so much when she moved. She had friends and activities and a life I wasn't equipped to provide her. I wish you nothing but the best in making this decision because we all know how difficult it is.
i love your words.