Decision help needed !

[randall_o]

My mother (85) has been in a Memory Care (Alz) facility for two years
now, a very nice place actually, upscale I would say. About ten days
ago she was diagnosed with leukemia and it is progressing fast,
prognosis weeks to months to live, hospice care ordered by her doctors
(meaning definitely <6 mos to live, quite possible <3 mos).

I am struggling horribly after hearing this news as to whether to
fight to bring my mother to my home to care for her for her end days/
weeks, or to leave her where she is at.

I live 5 hrs from the city she is in (since 1970), hard for me to be
so far away. My sister (the only other person involved in this) is the
city my mother is in.

At my age I do not know if I have it in me physically to take care of
the 24/7 nursing my mom would need if I bring her to my home.
Spiritually I want to bring her to my home to help with the dying.
But the real question is what is best for my mother, not me? I have to
put her needs above mine.

Would a person with moderately advanced Alzheimer's and dying want to
come to the son's home to die, or would they prefer to stay where they
are at and familiar with, and have female nurses they know giving them
sponge baths, etc?

I really do not know the answer. Could use some feedback, votes,
thoughts as to what to do.

[Gail Michael]

Dear Randall,

Only objection I have to nursing homes, or group homes is some patients are
on anti-depressants, Xanax, Paxil or some other stimulant. and stimulants
are dangerous to some others that do not take them, as they travel with
stress to those not taking them and give them crohns illness which can cause
many other illnesses. I do not know if your mother is susceptible to
getting crohns if she has alzheimers, (her mind may too out of touch) but if
she is, I think taking her home is better if you or others at home are not
taking stimulants, she would be safer at home. <Most people do not know
this about stimulants, but it is true.) The crohns can travel anywhere to
the mind of the person the med taker knows. No one realizes this takes
place. Actually it is strange that this mind situation takes place, but
it does. This includes marijuana, cocaine etc.
Gail Michael

Post by randall_o
My mother (85) has been in a Memory Care (Alz) facility for two years
now, a very nice place actually, upscale I would say. About ten days
ago she was diagnosed with leukemia and it is progressing fast,
prognosis weeks to months to live, hospice care ordered by her doctors
(meaning definitely <6 mos to live, quite possible <3 mos).
I am struggling horribly after hearing this news as to whether to
fight to bring my mother to my home to care for her for her end days/
weeks, or to leave her where she is at.
I live 5 hrs from the city she is in (since 1970), hard for me to be
so far away. My sister (the only other person involved in this) is the
city my mother is in.
At my age I do not know if I have it in me physically to take care of
the 24/7 nursing my mom would need if I bring her to my home.
Spiritually I want to bring her to my home to help with the dying.
But the real question is what is best for my mother, not me? I have to
put her needs above mine.
Would a person with moderately advanced Alzheimer's and dying want to
come to the son's home to die, or would they prefer to stay where they
are at and familiar with, and have female nurses they know giving them
sponge baths, etc?
I really do not know the answer. Could use some feedback, votes,
thoughts as to what to do.

[Evelyn]

On Sun, 26 Jun 2011 02:16:32 -0500, "Gail Michael"

Post by Gail Michael
Dear Randall,
Only objection I have to nursing homes, or group homes is some patients are
on anti-depressants, Xanax, Paxil or some other stimulant. and stimulants
are dangerous to some others that do not take them, as they travel with
stress to those not taking them and give them crohns illness which can cause
many other illnesses. I do not know if your mother is susceptible to
getting crohns if she has alzheimers, (her mind may too out of touch) but if
she is, I think taking her home is better if you or others at home are not
taking stimulants, she would be safer at home. <Most people do not know
this about stimulants, but it is true.) The crohns can travel anywhere to
the mind of the person the med taker knows. No one realizes this takes
place. Actually it is strange that this mind situation takes place, but
it does. This includes marijuana, cocaine etc.
Gail Michael

Randall, please do double check any information you get on this
newsgroup. I don't believe that the information posted above will
pass muster with a medical doctor. We do have a couple of trolls
around here who seem to have some pet theories which will not stand
the light of day. I will answer your posting separately.

Evelyn

[Evelyn]

On Sat, 25 Jun 2011 11:20:28 -0700 (PDT), randall_o

Post by randall_o
My mother (85) has been in a Memory Care (Alz) facility for two years
now, a very nice place actually, upscale I would say. About ten days
ago she was diagnosed with leukemia and it is progressing fast,
prognosis weeks to months to live, hospice care ordered by her doctors
(meaning definitely <6 mos to live, quite possible <3 mos).
I am struggling horribly after hearing this news as to whether to
fight to bring my mother to my home to care for her for her end days/
weeks, or to leave her where she is at.
I live 5 hrs from the city she is in (since 1970), hard for me to be
so far away. My sister (the only other person involved in this) is the
city my mother is in.
At my age I do not know if I have it in me physically to take care of
the 24/7 nursing my mom would need if I bring her to my home.
Spiritually I want to bring her to my home to help with the dying.
But the real question is what is best for my mother, not me? I have to
put her needs above mine.
Would a person with moderately advanced Alzheimer's and dying want to
come to the son's home to die, or would they prefer to stay where they
are at and familiar with, and have female nurses they know giving them
sponge baths, etc?
I really do not know the answer. Could use some feedback, votes,
thoughts as to what to do.

Dear Randall,

As you say, your mom has already been in this facility for two years,
you say it is a nice upscale place, and your sister is nearby. I am
sure you are aware that with a failing memory, adjustments to new
living situations can be very difficult.

If you move her to your area, then your sister will be far away from
her. If you leave her where she is, it will still be hard for you to
visit her, but she has the benefit of being familiar with the place,
the personnel, the food, just about everything, and one of her
children is close by for any emergency. Those are some serious
benefits towards staying where she is.

Then too, it is very difficult to provide the kind of care she will
need. You can't begin to imagine how difficult it could be. Having
done the caregiving bit at home myself a few years ago, I cannot tell
you how difficult and exhausting it was to care for someone at home.
Once my mother in law was in a nearby nursing home, I was very
grateful to be able to simply go and visit and enjoy quality time,
instead of being frazzled. I was able to go home and get at least a
little sleep at night! I also believe her personal dignity was
better served by being in a professional location with professional
care.

My vote would be to leave her where she is, but make every possible
effort to see her whenever you can get there. If she is sick enough
to be in the process of dying, she probably would find a move more
stressful than to stay put.

Can you take a week off here and there, and visit her often? You can
spend all the time you want with her, and it will be quality time.

Let the nurses continue to do the caregiving and routine tasks, you
will not exhaust yourself from those routine tasks, and therefore free
to be better company for her.

Just my take on it....

Evelyn

[A R Pickett]

Randal inquired in part> Would a person with moderately advanced Alzheimer's
and dying want to

Post by randall_o
come to the son's home to die, or would they prefer to stay where they
are at and familiar with, and have female nurses they know giving them
sponge baths, etc?
I really do not know the answer. Could use some feedback, votes,
thoughts as to what to do.

Randall - my mother in law did not have AD, but as she neared the end of her
life, the local hospice agency was able to provide their services to her
while she was resident in a nursing home.

I would recommend that you add contacting the closest hospice agency to your
investigations into what's best for you, your sister, and yourself. We were
very glad we contacted them on my mother in law's behalf. They are very
common sense and down to earth, and send a nurse, a social worker, and a non
denominational chaplain as a co ordinated team. You are free to utilize as
many of the ancillary counseling services as you wish. For a patient
eligible for Medicare, there is no charge for hospice services and they can
be provided to a nursing home resident.

My initial reaction to your inquiry is to agree with Evelyn. That all
things considered, the stability of her remaining where she is will provide
an important factor in the care you and your sister provide her.

Hope this helps!
--
A R Pickett aka Woodstock

"Baseball, it is said, is only a game. True. And the Grand Canyon is only a
hole in Arizona."
George F. Will.

Now blogging!
http://www.journalscape.com/woodstock/

Remove lower case "e" to respond

[Mary Gordon]

I would look into hospice care facility or program close to where you
live. I'm sure she will qualify, and they can be wonderfully
supportive both to the person who is dying, and to their family. They
are also very flexible and accomodating in terms of visiting hours,
special requests etc.

They usually offer programs in home or in a facility. When it's in
home, they usually provide care givers, but it sounds like you would
be better off with her in a compassionate facility.

My 2 cents is she won't care where she is, and she won't think of your
place as anything different than the memory care facility in terms of
recognizing it as a private residence or something special. Her mind
has taken her back long before you had a home of your own.

My mother in law often wanted to go home, but if you questioned her,
it was her girlhood home she was pining for, where she thought her
parents and sisters were all alive and waiting for her as though
frozen in time, although the house had been gone from the family for
50 years when she passed.

Mary

[Alan Meyer]

Post by randall_o
My mother (85) has been in a Memory Care (Alz) facility for two years
now, a very nice place actually, upscale I would say. About ten days
ago she was diagnosed with leukemia and it is progressing fast,
prognosis weeks to months to live, hospice care ordered by her doctors
(meaning definitely<6 mos to live, quite possible<3 mos).
I am struggling horribly after hearing this news as to whether to
fight to bring my mother to my home to care for her for her end days/
weeks, or to leave her where she is at.

...

I agree with the other posters. Your Mom is probably better off where
she is. In addition to the other factors already mentioned, I'd like to
add a few more to the list of problems that she would face if you
brought her to your home.

1. You'll need to find doctors in your area that can handle her
oncologic problems, disease symptoms, and pain management. If she has
good medical care where she is, you may have trouble finding equally
good care in your area. Even if you can find good people who are
willing to take her on, it's sometimes better to use a doctor that
already knows a patient than to bring in a new guy for whom your mother
has never been a patient and won't be a patient for long, and expect him
to focus very well on her.

2. You'll probably need hospice care wherever she lives. It will be
tremendously difficult for you just handle her routine needs 24 hours a
day. If she needs injections, IV, or other medical procedures to keep
her comfortable, it will be best if she has a nurse handy. She may need
a hospital bed, a wheel chair, monitoring devices, specialized drugs,
and other equipment that you don't have.

3. Bringing her home on a five hour journey could be problematic. It
may be very difficult for her to travel that far in a car. It may
weaken her further. There could be some difficult incidents in the car.
An ambulance would cost a fortune and might still be problematic.

4. If she only has weeks to live, all of this is impossible. It will be
a big hassle for both you and her. Even if she has months to live, it
will be problematic.

5. As she gets closer to the end she may spend a great deal of time
sleeping, either due to the ravages of the disease or the effects of the
pain killers required to keep down her suffering. She won't care where
she is.

Since she is 85 years old, her ability to fight the disease is probably
very poor. Since she has AD, her difficulty in communicating with her
doctor may have delayed the diagnosis until she was pretty far advanced.
So there may be a greater likelihood of "weeks" than "months".

I recommend that you leave her where she is and make plans for a number
of trips to see her. If she is able to talk on the telephone and would
like to do that, then also spend time with her by phone.

If your sister is handling any day to day needs, co-ordinate with her.
Perhaps you can plan to visit your Mom at times when your sister needs
to be away from home or just needs a break. Anything you can do for
your sister during this period is a big plus.

I also recommend that you not be too depressed about this. Things are
under control. Put your energy into whatever you can do for her without
bringing her to your home.

My best wishes for you, your Mom, and your family.

Alan

[s***@memoryofmom.com]

Post by randall_o
My mother (85) has been in a Memory Care (Alz) facility for two years
now, a very nice place actually, upscale I would say.  About ten days
ago she was diagnosed with leukemia and it is progressing fast,
prognosis weeks to months to live, hospice care ordered by her doctors
(meaning definitely <6 mos to live, quite possible <3 mos).
I am struggling horribly after hearing this news as to whether to
fight to bring my mother to my home to care for her for her end days/
weeks, or to leave her where she is at.
I live 5 hrs from the city she is in (since 1970), hard for me to be
so far away. My sister (the only other person involved in this) is the
city my mother is in.
At my age I do not know if I have it in me physically to take care of
the 24/7 nursing my mom would need if I bring her to my home.
Spiritually I want to bring her to my home to help with the dying.
But the real question is what is best for my mother, not me? I have to
put her needs above mine.
Would a person with moderately advanced Alzheimer's and dying want to
come to the son's home to die, or would they prefer to stay where they
are at and familiar with, and have female nurses they know giving them
sponge baths, etc?
I really do not know the answer. Could use some feedback, votes,
thoughts as to what to do.

My mom passed away about 18 months ago in a nursing home. Dad was
taking care of her at home the best he could, the he got Lymphoma and
we had to move her to a nursing home. We tried to take care of her at
home for a while, but it is a monumental task. Mom was reduced to a
wheel chair and wearing depends. It is a 24/7 job and I found it very
hard. The upside for us was that my sister-in-law was a sppech
therapist at a nearby nursing home and was able to get mom in there
quickly.

We found that staff was really good, but they are not going to give
her the one-on-one care she gets at home. Another positive with the
nursing home was that she was around other, similar patients and she
was very sociable in the beginning.

The decisions are not easy, but if she is that close 3-6 months, the
level of care needed will be quite high.

Good luck Randall!

[Mrs. E. Cox]

Moving an Alzheimer's patient from familiar surroundings can be very
disorienting. Does she feel "at home" where she is now, or restless
wanting to leave?

[Lynn Lynn]

I tried (and did) care for my mother when she was released from Hospice.
However, she slowly deteriorated and it was very difficult for me
mentally and physically.


She returned to Hospice for her final days not really even knowing who I
was.

I really think you would find it more difficult than you imagine to care
for her. As the end becomes nearer there are more and more challenges.

Just try to tell her you love her and how much you appreciate everything
she has always done for you. Then let those who are more capable meet
her every day needs. I don't think you will regret it.

My best to you and your family.

Lynn

[Strobe]

Post by Lynn Lynn
I tried (and did) care for my mother when she was released from Hospice.
However, she slowly deteriorated and it was very difficult for me
mentally and physically.
She returned to Hospice for her final days not really even knowing who I
was.
I really think you would find it more difficult than you imagine to care
for her. As the end becomes nearer there are more and more challenges.

Absolutely.
It takes a team to provide enough care 24/7.
No one person can do the job properly.

[Bohgosity BumaskiL]

On 2011-06-25 12:20 PM, randall_o wrote to the effect that he wanted to
be with his mother when she died:
(snip)

Two people who are not nurses, one of them with job to keep, would not
be enough staff for 24/7 care. You might manage with a full-time
homecare nurse, the minimum being one.

Let's say you can provide eight hours per day in addition to your job.
Your wife provides another eight.
And if you want a life, then you will be paying for another eight.

It would be much easier to stick with the status quo, and hope that her
doctors do a good job of predicting her dying day, just in case you
really want to do that five hour drive.

And of course, if you still want to rock this boat,
you need your mother's decision.

[Bohgosity BumaskiL]

You can't leave your sister out of the equation, either.

[Bohgosity BumaskiL]

Maybe you can arrange some skype sessions.