Re: Stamina When Emergencies Arise

[Guest guest]

Chelsea,

I know that you feel the need and the obligation to help your parents through

their hour of need, but you need to take care of yourself first. How good are

you going to be to anyone if you are in pain? Why don't you call the social

worker at the hospital and see if she can hook you guys up with a nurse to come

look after both your parents (Social Security will pay for this), and get

someone to come in to clean their house (social security will also take care of

this), so that way you will lighten your burden.

There are plenty of services that social security can provide for your parents

to help them out, all you need is a social worker to coordinate these services

for you. I think that if you also call the social security office they can give

you information on how to go about this.

You are not super woman, you are ill and you need to take care of you. Get all

of the help that you can get for your parents, so that way you can take care of

yourself. You will not be called a " bad daughter " for doing this, so go ahead

get the help that you need. Take care,

Millie

--- " chelsea " wrote:

>

> If ever I needed all my strength and

> stamina, it's now. My body is failing me terribly. I can't just call my

> brother and say, hey, I feel bad today, take over for me. That's just

> not fair. I'm terrified that I'm losing my mom and don't have the

> strength to get her through this. So scared.

>

[Guest guest]

Hi Chelsea,

You have my sympathies and I do understand your situation. Although my situation

is different from yours, it is similar in its own way.

On December 29, 2008, my father died. He had metastatic melanoma throughout his

body, including his brain. Three months before he died, he was a strong, robust

man. My mother was shocked that his health failed so quickly, despite the best

efforts of his doctors.

My mother and father lived in a farmhouse in rural Upstate NY. My parents had

not appropriately maintained the place for the past ten years. The landscaped

grounds near the house were completely overgrown. The damage from several years

of ice and wind storms had not been picked-up. The house had numerous, small

problems that needed to be fixed. It also needs 50K worth of major repairs that

we're leaving to the buyer (because they require serious remodeling). I'd swear

my parents had become real pack rats. The place had to be prepared for sale this

Spring and my mother had to move into an apartment in town.

To make matters worse, my brother has a drinking problem and he has Narcissistic

Personality Disorder. He does not think I'm disabled--he thinks I'm a big time

faker. I've got Complex Regional Pain Syndrome, Bilateral Radial Sensory Nerve

Neuropathy, Bilateral Medial Sensory Nerve Neuropathy. I do not tolerate all of

the medications used to treat this condition (and the current most effective

treatment for CRPS, Ketamine infusion, is too dangerous--and could easily kill

me). Even though I've consulted some of the top experts in my condition, my

brother thinks he knows more about my medical condition than they do. Needless

to say, my brother is much more of a problem than a help. My mother clearly

favors my brother.

I initially planned to spend three months helping my mother and to be home by

Easter. Because of my health problems, it took me almost a year to somewhat

straighten things out. That is, I cleaned-up the grounds, restored the

landscaping, put easy to maintain paths in, helped my mother clean-up the house

and get rid of 80% of what was in there. The house is ready to go on the market

in the Spring.

Unfortunately, my mother has serious psychiatric problems of her own. She is

depressed. Several mental health people think that she probably has Narcissistic

Personality Disorder. My mother treated me rather badly even though I was

helping her out. In public, my mother was a nice little old lady. In private,

with me, she rode a broomstick. While there, I discovered that my mother and

father had spread rather nasty stories about me; some of them were about things

that happened 35 or more years ago. This made it harder for me to get neighbors

to help--because people didn't believe me when I asked for help. Even though she

was an abusive mother, she is the only mother I know and I love her nonetheless.

It's funny how love works.

I finally woke up to the situation. Several of my friends from the area and who

know about the bad stories and who take their religion seriously have said, " You

have met your family obligations and then some. You can't save your mother from

the messes she made--either through her actions or through her inactions. Your

mother is not willing to punish your brother when he is exceptionally mean and

cruel. She was not willing to confront your father when it was clear that he

didn't believe that you are disabled. She is not willing to change the will to

make sure you are provided for first--even though your parents choose your

career and sabotaged your dreams. You have met your family obligations. You owe

her nothing. It's time for your spoiled brat of a brother to step up to the

plate and help. It's time for her to reap what she has sewn. "

I now have Rheumatoid Arthritis, which was triggered by the work I did for my

mother, along with the other health problems. My doctors have told me that I

physically can't help my mother out, even if I wanted to. I find that it's

easier now for my CRPS and nerve pain to flare. My doctors tell me that, now

that I'm not so stressed out and that my body is not so filled with adrenaline,

I'm noticing my pain more.

Chelsea, you can't go it alone. Like me, you're not physically up to the

challenges of doing elder care. I know this hurts and is difficult to face. On

behalf of my mother, I worked myself so hard that I probably do have permanent

damage. I don't want you to make some of the same mistakes I made.

One of the things I learned was to NEVER drive someone with a medical emergency

to the hospital yourself. Always call the ambulance squad. My mother had a

medical emergency and insisted that I drive her to the hospital. We were stuck

waiting in the ER waiting room for five hours, before she was seen. A neighbor

(who is on the ambulance squad) told me that if she had gone by ambulance, the

ER would have taken her right away.

If I was in your situation, today, I would do is contact either a traditional

social worker whose specialty is helping families arrange for elder care (many

hospitals have them) or an elder care coordinator. Your father's discharge

planner would know where to turn. I know that my town's senior center has one. I

have found that the Visiting Nurses Association to be a godsend and perhaps you

can get referred to them. I think your parents need a housekeeper while your

mother is recuperating. This will take some of the stress off of both you and

your brother. It's entirely possible that Medicare would pay for the VNA

services while she's recuperating. Give them a call.

It's time for you and your brother to have a family meeting probably with a care

coordinator or social worker and to discuss your parents' ongoing needs. You

will need to know what their financial situation is. It might be time to consult

a financial planner. Your parents have to realize that you can't provide elder

care.

If your brother has a family of his own, he might be limited as to what he can

do. It might be time for your parents to move into some sort of supported senior

housing. An expert would be able to discuss the options (whether it be age in

place with supports, some sort of institutional care: independent living or

assisted living).

It's difficult, because most adult children really do want to do what is right

for their elderly parents and sometimes make sacrifices that they should not

make. That's another reason why you want an elder care coordinator.

Your parents should also consult an elder law attorney, to make sure their

affairs are in order. I don't mean just the will; there are other documents that

they might need. The fact that you are disabled does complicate things; it also

means that there are estate planning options that could be beneficial to both

you and your parents that should be explored. This is a complex area of law (the

laymens' guides to wills and trusts are no help here) and your parents need an

expert elder law attorney.

I know this is a long post, but I hope that I have been helpful.

[Guest guest]

wrote:

> One of the things I learned was to NEVER drive someone with a medical

emergency to the hospital yourself. Always call the ambulance squad.

:

Yes, I've learned this lesson well, but thank you for reminding me. When we

arrived at ER with my mother, I was roundly admonished by the ER staff that I

should have called 911 right away. I'll never make that mistake again, although

it turned out alright and they got my mother into ER immediately.

My brother and I have discussed options but both agree that a housekeeper is

going to be essential, I will get onto contacting the coordinators at the

hospital and find out if they can steer me in the right direction. Moving my

parents to an assisted care facility is not an option, my mother very nearly has

the biggest fit imaginable if anyone even comes close to mentioning it. Which

is ok. We are very close at hand.

I am taking my mom to a doctor appointment tomorrow and have ALOT of questions

for the doctor myself. He's my PCP and the doctor for my entire family, parents

included so he is very close to us and caring and knows my mother's personality,

willfulness and lovable little quirks. After we talk to him, my brother and I

will talk about where we go from here and after that comes the big family

meeting. One thing we have decided on is Life Alert necklaces for both mom and

dad, and they have agreed. We'll get everything else on the table after seeing

our dear Doctor.

I want to thank you, , and Millie for sharing your experiences and your

words of support and advice. You have no idea how much it means to me. The

frustration of not being able to care for my parents the way I want to is

breaking my heart and is a bitter, jagged little pill to swallow but I will

learn to do what I can and delegate the rest to professionals or other family

members. I am bound and determined that, chronic pain and flares not

withstanding, I will get my beloved parents through this, so help me God,

whatever it takes.

I am seeing another doctor this afternoon and am going to discuss this latest

challenge with her, she is usually very down to earth and comforting so that

will help.

Thank you all for being here. I've only been here a relatively short time but,

honestly, I don't remember how I got along before I discovered this list. You

are all angels.

(((Hugs)))

chelsea

[Guest guest]

Bless you and your parents. My mother went through a terrible time before she

died. She had a large blood clot which cut off circulation to both legs. She

had both legs amputated very close to the pelvis. In addition, she was loosing

her mental faculties. Easy chores became hard, sometimes too hard for her to

do. She did things that we never thought she'd do: internet gambling site when

she never ever played penny poker, or watching scary movies which she had

prohibited us from seeing. If that wasn't enough, she developed breast cancer,

had a mastectomy, and died of complications a few years later.

Here are the agencies you might look to for help:

1. Social Security

2. Area Agency on Aging

3. United Way

4. Visiting Nurse program from the hospital(s) or from the city/county try both

5. Social Services from the hospital

6. Homemaker Services from all of the above and anyone else

7. Respite Care for yourself and your mother. You can't take care of others if

you're falling apart.

8. Adult Day Care - even once a week might help your mother relax, I don't know

if your father is physically up for something like that.

9. Grocery Shopping - several grocery stores in my area have an shopping

service. You tell them what you want, they bag it all up for you, all you have

to do is pay for it and take it home.

10. Drug Store Shopping - Many pharmacies offer a prescriptions by mail

program, some will even deliver prescriptions and other supplies (gauze,

toothpaste, etc) for a small fee.

11. Assistant Shopping Services - If you ask for assistance at the front desk

of grocery and other stores, you can drive the scooter and point at what you

want. An employee will do all the stretching and lifting to place items in your

cart, unload the cart and take the bags to your car. It may not seem like a lot

of help, but every little bit that takes some stress off you really pays off. I

found this to be very helpful for me.

I hope you find this helpful. Again, get some help or you won't be able to care

for yourself, let alone your mother.

Chelsea wrote:

> All was going well until 10 days ago, when my mother (who has always

> enjoyed excellent health and is the most active 80 year old I've ever

> seen) called me in the early morning saying that she couldn't " catch her

> breath " .

>

> We bundled her and my dad into the car and off we went to emergency.

> After 7 hours and a barrage of tests the hospital doctors announced that

> they had found pulmonary embolisms in both my mom's lungs (blood clots)

> and admitted her to the hospital to begin an aggressive treatment of

> blood thinners.