Dementia Support Group
Dementia is the progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be disoriented in time, place and person (not knowing who they...
This came from one of the Alz/Dementia support groups I am on and I thought it was most helpful and wanted to share it with others.
Do:
1) Stick to routines: Our loved ones need to know that breakfast is
at 8, lunch at noon, dinner at 7, bedtime at 10, etc. Keeping their
day very structured gives them a feeling of 'normalcy' and helps to
feel more in control of their lives.
2) Keep their environment reasonably quiet and uncluttered. Our loved
ones often will have trouble determining what is happening when there
are several things going on around them at once. Even if is just the
t.v. in one room, a radio in another, and someone talking on the
phone in an other. Where we can recognize the sounds or activities
and tune them out, our loved ones can not. This often adds to their
confusion and feelings of insecurity. Also clean off dressers,
tables, counters, etc. so that your loved one sees only what is
appropriate for them to use. Many a time a loved one has been found
brushing their teeth with Ben Gay because the tube was on the same
counter with the toothpaste.
3) Clean out the closet and dresser. Make clothing choices simple and
appropriate for the season. If faced with too many choices you may
find your loved one dressed in shorts and a tshirt in winter or in a
sweat suit in summer. If possible organize clothes in sets, one pair
of socks, one pair of underware, one shirt, one pair of pants so that
your loved one or a caregiver can grab a pile and know that the
appropriate clothes are available.
4)Keep choices simple. Give your loved one 2 choices and no more. "do
you want eggs or cereal for breakfast?" Too many choices confuse our
loved ones.
5) Be the parent. While I don't advise treating our loved ones like
small children it is necessary many times. If you wouldn't allow a 4
year old to do it, don't allow your loved one to do it.
6) Make bathing a regular part of the routine, even if it is just a
wash up at the sink.Whatever method you chose, stick with it.
Consistancy is the key. Run the bath or get the shower running, get
all the towels, clothes, washcloths, soaps, etc together in the
bathroom prior to bathing and try to make bathtime fun for them just
like you would for a child. Also place a brightly colored mat (but
not a solid dark color) in the bottom of the tub. Many of our loved
ones see the tub as a giant hole and develop a fear of the bath.
7) Cover or remove all mirrors and reflective surfaces in areas that
your loved one frequents. Many of our loved ones believe themselves
to be much younger than they are or lose the ability to recognize
themselves. That "stranger" or "old person" in the mirror often
frightens them.
8) Take time for yourself so that you don't become as isolated as
your loved one. Get a sitter for them just like you would for a small
child and go out. Make it part of the weekly routine! Many will buck
and fight against it just like a toddler who doesn't want mom or dad
to leave them, but just like a toddler they will adjust once you are
out the door.
9) Learn to lie. I know it isn't socially acceptable, but it is AD
necessary. We have to tell our loved ones whatever they need to hear
to keep them calm and cooperative.
10) Get DPOA and health care proxy as soon as possible, this will
give you the ability to make the hard decisions when the time comes.
11) Look at facilities before you need them, so that you can place
your loved one with confidence when the time comes. For most people
with AD it is not a matter of if they will need to be placed, it is a
matter of when they will need to be placed.
12) Do call Hospice directly for an evaluation when your loved one
needs more care than you can comfortably provide or if you feel they
are not being cared for in the facility the way they should be. For
the most part doctors are not familiar with hospice in regards to AD
to help you, so call Hospice yourself. Hospice is a wonderful
resource for care and support of not only your loved one, but also
for you. They can help you determine what is part of the illness and
what is part of the natural dying process, which by the way generally
starts at least 6 months prior to death.
Don'ts:
1) Don't tell them NO! it seems to be a trigger word that will buy
you all kinds of grief. Use terms like "not now, maybe later", "I
don't have any", "Maybe, we'll see", or whatever to tell them no
without actually saying it.
2) Don't argue with them. Their reasoning ability is gone. If they
become argumentative,just go along with it as best as you can until
the mood to argue passes. "Sure, whatever" is a great response when
they start to argue. If it is about not wanting to bathe or eat then
just let it drop and try again in fifteen minutes.
3) Don't accept aggressive or violent behavior. If your loved one
begins to become aggressive tell them firmly that you will not be
spoken to or treated that way. Either send them to their room or you
leave the room immediately. If your loved one shows signs of becoming
violent, call the police. Many a caregiver has been seriously hurt or
killed because they didn't take threats of violence seriously. Make
sure your loved one's doctor is notified of the aggressive behavior,
there are medications to help control this.
4) Don't feel guilty! We are all doing the best we are able with an
illness that changes from day to day. Many caregivers feel they are
bad people because they reach a point where they just can't do it
anymore. They start to wish their loved one would just die and end
it, they start to think about putting their loved one in a facility,
they start to avoid their loved one. These are all natural feelings
and they are valid. You are human and you can only do so much.
5) Don't allow others to stick their nose in if they are unwilling to
help. We all face the "well meaning" friend or relative who is quick
to judge how we are doing things and give their opinion on what we
should do differently. Use what you can and throw the rest away.
Simply tell them " If you want to do this, be my guest, otherwise
butt out". Remember "Opinions are like butt holes, everyone has one"
6) Don't allow your loved one to manipulate you. They are as good at
it as small children! They will beg, plead, cry, or argue to try to
get out of doing what they don't want to do. Stick to your guns and
be firm with them.
7) When the end does come, don't start second guessing yourself.
Remember that you did what you needed to do at the time and whether
or not it was the "right" thing to do no longer matters. Get grief
counseling and start to take control of your life again. We all
grieve twice. The first time is when we lose our loved ones to AD,
the second time is when we lose them to death. Also, do not feel
badly if you feel relieved that it is finally over. This is a natural
feeling, so give yourself a break. AD is a terminal illness, it
doesn't end until our loved one is gone.
Hugs,
Do:
1) Stick to routines: Our loved ones need to know that breakfast is
at 8, lunch at noon, dinner at 7, bedtime at 10, etc. Keeping their
day very structured gives them a feeling of 'normalcy' and helps to
feel more in control of their lives.
2) Keep their environment reasonably quiet and uncluttered. Our loved
ones often will have trouble determining what is happening when there
are several things going on around them at once. Even if is just the
t.v. in one room, a radio in another, and someone talking on the
phone in an other. Where we can recognize the sounds or activities
and tune them out, our loved ones can not. This often adds to their
confusion and feelings of insecurity. Also clean off dressers,
tables, counters, etc. so that your loved one sees only what is
appropriate for them to use. Many a time a loved one has been found
brushing their teeth with Ben Gay because the tube was on the same
counter with the toothpaste.
3) Clean out the closet and dresser. Make clothing choices simple and
appropriate for the season. If faced with too many choices you may
find your loved one dressed in shorts and a tshirt in winter or in a
sweat suit in summer. If possible organize clothes in sets, one pair
of socks, one pair of underware, one shirt, one pair of pants so that
your loved one or a caregiver can grab a pile and know that the
appropriate clothes are available.
4)Keep choices simple. Give your loved one 2 choices and no more. "do
you want eggs or cereal for breakfast?" Too many choices confuse our
loved ones.
5) Be the parent. While I don't advise treating our loved ones like
small children it is necessary many times. If you wouldn't allow a 4
year old to do it, don't allow your loved one to do it.
6) Make bathing a regular part of the routine, even if it is just a
wash up at the sink.Whatever method you chose, stick with it.
Consistancy is the key. Run the bath or get the shower running, get
all the towels, clothes, washcloths, soaps, etc together in the
bathroom prior to bathing and try to make bathtime fun for them just
like you would for a child. Also place a brightly colored mat (but
not a solid dark color) in the bottom of the tub. Many of our loved
ones see the tub as a giant hole and develop a fear of the bath.
7) Cover or remove all mirrors and reflective surfaces in areas that
your loved one frequents. Many of our loved ones believe themselves
to be much younger than they are or lose the ability to recognize
themselves. That "stranger" or "old person" in the mirror often
frightens them.
8) Take time for yourself so that you don't become as isolated as
your loved one. Get a sitter for them just like you would for a small
child and go out. Make it part of the weekly routine! Many will buck
and fight against it just like a toddler who doesn't want mom or dad
to leave them, but just like a toddler they will adjust once you are
out the door.
9) Learn to lie. I know it isn't socially acceptable, but it is AD
necessary. We have to tell our loved ones whatever they need to hear
to keep them calm and cooperative.
10) Get DPOA and health care proxy as soon as possible, this will
give you the ability to make the hard decisions when the time comes.
11) Look at facilities before you need them, so that you can place
your loved one with confidence when the time comes. For most people
with AD it is not a matter of if they will need to be placed, it is a
matter of when they will need to be placed.
12) Do call Hospice directly for an evaluation when your loved one
needs more care than you can comfortably provide or if you feel they
are not being cared for in the facility the way they should be. For
the most part doctors are not familiar with hospice in regards to AD
to help you, so call Hospice yourself. Hospice is a wonderful
resource for care and support of not only your loved one, but also
for you. They can help you determine what is part of the illness and
what is part of the natural dying process, which by the way generally
starts at least 6 months prior to death.
Don'ts:
1) Don't tell them NO! it seems to be a trigger word that will buy
you all kinds of grief. Use terms like "not now, maybe later", "I
don't have any", "Maybe, we'll see", or whatever to tell them no
without actually saying it.
2) Don't argue with them. Their reasoning ability is gone. If they
become argumentative,just go along with it as best as you can until
the mood to argue passes. "Sure, whatever" is a great response when
they start to argue. If it is about not wanting to bathe or eat then
just let it drop and try again in fifteen minutes.
3) Don't accept aggressive or violent behavior. If your loved one
begins to become aggressive tell them firmly that you will not be
spoken to or treated that way. Either send them to their room or you
leave the room immediately. If your loved one shows signs of becoming
violent, call the police. Many a caregiver has been seriously hurt or
killed because they didn't take threats of violence seriously. Make
sure your loved one's doctor is notified of the aggressive behavior,
there are medications to help control this.
4) Don't feel guilty! We are all doing the best we are able with an
illness that changes from day to day. Many caregivers feel they are
bad people because they reach a point where they just can't do it
anymore. They start to wish their loved one would just die and end
it, they start to think about putting their loved one in a facility,
they start to avoid their loved one. These are all natural feelings
and they are valid. You are human and you can only do so much.
5) Don't allow others to stick their nose in if they are unwilling to
help. We all face the "well meaning" friend or relative who is quick
to judge how we are doing things and give their opinion on what we
should do differently. Use what you can and throw the rest away.
Simply tell them " If you want to do this, be my guest, otherwise
butt out". Remember "Opinions are like butt holes, everyone has one"
6) Don't allow your loved one to manipulate you. They are as good at
it as small children! They will beg, plead, cry, or argue to try to
get out of doing what they don't want to do. Stick to your guns and
be firm with them.
7) When the end does come, don't start second guessing yourself.
Remember that you did what you needed to do at the time and whether
or not it was the "right" thing to do no longer matters. Get grief
counseling and start to take control of your life again. We all
grieve twice. The first time is when we lose our loved ones to AD,
the second time is when we lose them to death. Also, do not feel
badly if you feel relieved that it is finally over. This is a natural
feeling, so give yourself a break. AD is a terminal illness, it
doesn't end until our loved one is gone.
Hugs,
-
I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
thankyou for taking the time to give such useful information,so grateful.
A lot of the things you have mentioned i can relate to with my partner,this will really help me in my journey ahead with steve.
Sometimes i think i am going mad trying to help him but at the end of the day information you have given will help me to understand and cope a little better,
thankyou,altinkum
Thank you for your post. I am dealing with a loved one with ALS and dementia. He does not want to see even his brothers and I cannot get him to leave the house. Is it best to allow him his privacy or is it better to encourage him to leave the house and be around other people?