1. My sister, who lives in Europe, just called, very upset that my brother and I 'tore our parents out of their home. She says this is a very "American" disease-focused approach to dealing with dementia. She says that in Europe and Central America, kids would never do this. That the model is to keep elderly in their homes as long as possible. Can any folks from outside the US let me know if she is correct?
2. We are being told to screen all the calls..not answer..until the dust settles...even if it's a month or two out. This seems to be heightening the level of frustration/sadness in my parents' voices. "Pleeeeeeease call us." "We hate it here." "Please let us choose where to live." "Please call.."
Is this "cold-turkey-tough-love" approach generally used? Our Geriatric Care Managers (yes, we had to hire two...!) are insisting that contact with the kids is not good during the move-in/transition. This goes against every humanistic/respect for, dignity for, instinct in my body. Shouldn't be hand-holding my parents through this?
Of course, my mother just told me she never wants to see me, dead or alive. So, if her wishes come true, I guess one of us going to Hades!
I hope to contribute more over time, but right now, I'm a sponge looking for answers. Thanks for listening!
Your sister isn't look at things objectively. European medical plans and care are not the same as U.S. based. Therefore while people may be able to be kept in their homes longer with brought-in caregivers, the cost of living in the U.S. is not conducive for most people.
get one things straight!
YOU AND YOUR BROTHER DID NOTHING WRONG
If your sister feels your parents should be at home, tell her to come backa nd move in and take care of your parents full-time. or send money regularly and often to pay for their care with outside caregivers!
YOUR AND YOUR BROTHER DID NOTHING WRONG
You are protecting your parents from being a danger to themselves and others. Your sister is not aware of the disease and its manifestations within your parents.
My mother talked clear and calm on the phone with no stutter or whatever during the early period of the disease. In fact she was so different when on the phone, I found a spare hand receiver and gave it to her to carry around hoping it made her ability to talk be better (that didn't last long). So when my mother talked with people outside the house or on the phone, they thought everything she was telling them was the gospel truth.
One of my neighbors even called me at work and another stepped in front of my car to get me to stop to tell me how bad my sister was treating my mother. when I asked "why" they said, well your mother said she needs to go to the doctors and your sister refuses to take her. I said "did she tell you she was just at the doctor's last week?" "no" was their answer.
YOU AND YOUR BROTHER DID NOTHING WRONG. IN FACT YOUR BROTHER DID YOU A BIG, BIG FAVOR having them in a place down by him and appointment himself the one that would be involved with their decisions, etc. at this time.
so to end about sister -- let it go in one ear and out the other and just keep saying "U.S. is not Europe" and you're not here so you having nothing to say over this stuff.
Now for your issue:
As hard as it is, the caregivers are telling you correctly. They want your parents to break the bonds that tie them to you and your brother so that they learn to have to rely on the staff for most of their needs, with you and your brother supplementing and not the other way around.
When you join the marines, they literally break you from your family -- no contact for about, I think, 30 days. They break those ties so you learn to rely on your platoon buddies for your every need and your life. As they expect you to give totally up to them for their needs and their life.
When you go into detox. They literally strip you of everything and your family contact. Someone I know wasn't allowed family contact for the first 45 days of treatment. No calls, no visits, nothing. To get them to face what they've done to their lives and build their desire to change.
YOU AND YOUR BROTHER DID NOTHING WRONG
These are not your parents anymore as your sister remembers them. They are two individuals who can no longer take care of their own needs leading them with opportunities to hurt themselves or others.
Take Care and write often. Don't let sister get under your skin.
I have lived in Europe and in the USA. I took care of my Mom with Dementia at home in New York for 5 years, and then she went to a good Nursing home.
My friend in Germany had a father with Alzheimer's. She kept him at home with her for almost 10 years, then he went to a good NH.
The difference is: I took care of my Mom using her own money and mine, while I went to work every day. My friend took care of her father by giving up her job and getting paid by the government run medical insurance to stay home and be her Dad's FULL TIME CAREGIVER. Not only did she get paid, but she got money withheld towards her future social security.
That is interesting Martha and does explain the difference.
Katy, this is not Europe or Central America or America. This is a family dealing with a horrible illness the best way they can in whatever location or situation they are in. If Sister wants something different then she can come do it. Those that nor not "helping" don't have a valid say in what is done. It's easy to stand on the sidelines and tell the players what they should do. It's something very different to jump in the game and do it yourself. Kudos to you and your brother for doing it yourself. Don't listen to the naysayer sister. You did good and you have absolutely no reason to feel guilty at all.
Yes, it is common to leave the loved one to self adjust to their new surrounds. I learned that the hard way. Mom and Dad didn't have that opportunity. Every few days my sister would show up in AL. She would listen to Mom's whining and try to "fix" it. Mom became dependent on my sister and called constantly wanting something. If Mom didn't want to go to the dining room my sister brought her a sandwich. Instead of learning to be independent in her living situation she learned to be dependent on my sister.
When I moved them here I started out visiting regularly. In short order it all blew up just like AL did. Then a light bulb went off in my head. Mom acted out after I was there. So if I didn't go..... So I started visiting less and then went to Hawaii for 2 weeks. Since I have been back, I have been going about twice a week instead of every other day. And guess what.... it is getting better and better the less I visit. Mom is finally getting into the routine of the facility. I was the trigger that made her remember the things she was missing rather than enjoying where she is now! Now she is making friends other than me and finding her nitch. Thursday she was too busy showing off her new baby to her friends to be bothered with me I do wish I had realized this up front. It might have saved us a lot of grief.
As for the phone calls.... remember that it is the disease talking. Remember when your teen agers told you they hated you and wished you dead because you wouldn't let them go to that party where you knew there will be mischief? It's the same thing. In teenagers the portion of the brain that relates to self control and social behavior and reasoning and good sense is not developed. That is one of the first centers of the brain that is affected by the disease. They become extremely self centered. They don't realize that the words they say as so very hurtful. They don't understand the ramification of what they do and say. They just spit out of their mouth the first thing that pops in their head. Just equate it to a 2 year old temper tantrum. When mom or dad do that now.... I just stick them in time out in their own room!! They eventually do calm down. As I have said before I received those phone calls (sometimes constantly and sometimes periodically) for almost 2 years... and then she forgot how to use the phone. Just know that it is absolutely part of the disease and it will eventually pass for a new part of the disease.....