I recently did a talk for a family, to help
them understand what is in store for them
as they dealed with their love one who has
After, I thought maybe there is
someone out there who could
use the information too.
So here is my posting on the subject.
I warn you..it is quite long. I was going
to divide it in half. But figured once you
start reading it, you might want to know
the rest of the story now. So here it is
all in one posting.
Dementia and the family
Dementia/Alzheimer, hard to tell which one,
one has…One can have Alzheimers and
Dementia...but one doesn't have Dementia
and always have Alzheimer. It is a fine line.
One I can't tell you what the difference is.
Hardest for the family. The family member have
a short attention span. Watching your parent/spouse
decline is the hardest ….person of the stature now
You become the parent to someone you looked
up to. Got advice from. And you look in their eyes
and you see vagueness.
They will confuse you, with their brother, sisters,
because they think of themselves as teens or in their 20’s.
Sometimes they will confuse you with their own
parents. There are what we called windows… that
is where for a short time, they will be their old self.
Giving you hope… only to be dashed away.. So enjoy
them when they happen, while they happen.
As they decline both physically and mentality, you will
think they would be better off dead. Death you can deal
with. This disease is like a death of the mental kind, but
the body is around to remind you they aren’t. And if you
find yourself thinking they would be better off dead, don’t
feel ashamed. Don’t beat yourself up over it. It is a natural
feeling. As each related caretaker gets wore down, it is a
natural thought. Part of this comes from stress of it all, or
frustration of dealing with it all. As this is not the life you
wanted for your Dad/husband/mother/wife.
You will need each other for support. You will need your
spouse for support and they need to support you. None
of this is easy. Sound’s easy. But doubts will creep in.
Guilt will creep in. Resentment will creep in. The out-of-towners
won’t see the daily decline. They will have their own daily
lives. Out of sight….out of mind. They will make remarks …
meaning to help. The in-town family will feel the out
of Towner’s won’t understand. And resent that they aren’t
helping. That they having a normal life, that the main
related caretaker can’t enjoy.
So out-of-towners try to come for a week each year to
relieve the main caretaker. Especially if you hear the
in-town caretaker wearing out to the end of their wits…
Especially if Dad/Mom is still at home. If you can’t
come due to your job, then ask what can I do? Maybe a temporary
stay in a health care center. Even a week will help…
Other in-Towner’s, bring over dinner and help for the night.
What will a home-assisted, private or institutional…
give you? A safe place for Dad/Mom. 24 hour care. And you
can go home each night and refresh yourself, to take care
of the next day. Daughter-in-laws who don’t work can
take Mom/Dad over for visits every day. If everyone works,
then take her/him over after the home is done with dinner on week days.
Lunch for weekends. Each take turns so not to wear anyone out.
If they are doing well together then she/he can visit for
an hour or two or even the day. You can go do shopping
or what ever.
There will be good days and bad days. He/she will be
receptive on some days and some days verbally abusive.
Your Mom/Dad that lives at home..should not be there
on the negative days.
Wives, especially this generation, are brow beaten easily,
and will take the words as if he/she was well. The confused one,
on the other hand won’t remember it 2 hours later.
Their words might be directed at what they perceives to be
a stranger, his mother, his sister, not necessarily their spouse.
Best to leave and come back the next day, if they are verbally
It is hard on children to hear their parent put them down,
we all live for our parents approval. You all will be subject
to remarks of stealing his/her money, taking his/her home
away from him/her, not caring for him/her, dumping in this
place so you don’t have to deal with him/her…even though
you are there everyday…..
Your mother/father could also be accused of infidelity.
Questions you should have ….
Are they licensed?
Do they do background checks?
If aide is sick do they have backup?
Can they tell you anyone who used their services?
Better if you know a friend who has used their services
as they won’t give negative people for you to talk to.
Do you know anyone who runs an agency? Even if
they are full and can’t take on anyone else, they can
tell you some one else who is good.
This is going to cost big money, be prepared. Usually
starting at $25 an hour for in house care.
Do they have Alzheimer’s aides (it take special training
to deal with them) if they tell you, well anyone can do
that… not true… keep looking…
no background checks
rarely have back up so you fill in when the aide
doesn’t show for what ever reason
only a plus if you or your Dad/Mom knows aide.
are they certified?
When do you put Dad in a home? What kind of home?
There are assisted homes….
Huckleberry house, where they have only 4 or 5 people.
private home .. you need the same questions that you use
for agency. Back ground checks, you make checks on home often.
What is the resident to aide ratio… if it is a home.
When is institutional home needed… Health Care Centers…
(that is what they call nursing homes now. )
Sundowners… roams all hours at night.
Will walk out the door at 1am, 2am or 4am.
(you read about it or see it on TV a lot)
Combative… hits wife or children.
Can’t walk anymore and too heavy to lift.
Needs 24 hour medical care
Family will need to learn how to deal with verbal abusive
and lower chances of physical abusive situations.
Have to find another word other than NO.
“Another time, Dad/Mom. Let’s go over to ____ ___
and see what is going on” Diversions is the key
action. Don’t argue with him. Phases like “I am sorry
you feel that way, Dad/Mom” Most things, it doesn’t
matter… so pick your battles. If it is a safety issue
then stand your ground, but by using diversions words.
You will learn words like…”not right now Dad/Mom,
They aren’t ready for us yet, so let’s go over here.”
Change the subject. What was his interest? Cars,
engines, construction, building things/sewing, cooking,
folding laundry... Find chores …small.. safe ..
something to keep them from being bored. Does he/she
have hobbies, that are safe?
Going in the public is hard. Only you can determine
how much you can take by embarrassing situation. And
there will be many for now.
There are several support systems out there.
Alzheimer’s Support Group. You might call them….
It is great as there are other people who are walking
in the same shoes you are. Some of them longer, so
can give you hints of how to handle things.
If you have adult children, involve them too.
Look in the yellow pages for places that specialize in
dementia care. So you can stop by and check with them.
Preplanning… at home…A.S.A.P.
Protect the other spouse financially. I don’t want the
answers to this question. But want you all to answer
it to yourselves. Is there a company or income that is
only in the dementia’s person’s name? If it, get a lawyer
to see how you can protect the spouse. The lawyer
will help you do it legally. You might have to have them
declared legally incompetent.
Homes, especially health care center cost big money.
The more the care the higher the charge. When I left
the Health Care Center in 2003 and the rooms were
$129 a DAY. And the Behavior/Alzheimer’s Unit was
over $300 a DAY. Everything is extra. Tooth brushes,
hair, brush/combs and etc. So make sure when you take
them in, they have all the daily needs. They charge almost
double for those. For the price, you get a room/bed and
food and maybe laundry. If you do the laundry, you will
have less chance of clothes being lost, or ruin by the big
machines they have. Or be on someone else. Mark the
clothes with names.. this is very important.
It probably seems like I paint a black picture…
a negative picture… but I feel if I tell you the truth of it…
you will deal with it. If some of it isn’t as bad.. then you
will be prepared for the worse, and be surprised by the
A lot of it is your attitude. If you take everything
to heart, you will have a heavy burden. If you can find a
place in your mind, where you can see, that this is no one’s
fault, you are all in it together, and will take care of it together.
And when some of the rough edges come out, remember,
everyone is trying their best. Try to think about how that person,
the family member, feels. Be they live here, or out of town.
There will be some laughs. And there will be a lot of good times.
Where you can have a good visit, and still tell them ..you love them.
And the combative part? It will pass.. but so will the decline
keep coming. And some times… you just have to give it to
God, he will be your best support system of all.
Hope I have helped. Don’t forget you can ask questions…
and all the support units are more than willing to hear you out.
Ask them all the questions of how the family deals with it.
They have, they know. I was an aide for over 17+ years…
this is the aides’ point of view. And what I have seen with
the families and what they have gone thru.
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