When is it time to place in skilled nursing?

[Guest guest]

As I say in my LBD signature, it was the hardest thing I have ever

done--putting my husband in a nursing home.

My kids had been telling me I had to do something and they were helping me

out so well but they could see what it was taking out of me. I found myself

crying a lot and feeling so helpless. I finally decided that one of us were

going to get hurt if we didn't do something different. We took him to a

hospital for a brain scan and evaluation. They assured me that the best

thing for both of us was to place him. So it took a week, but we finally

found one. Not our first choice but it turned out to be fairly good. He was

just moved to our first choice and closer to home. He has gone downhill

severely since being placed last May and I don't know if he would have gone

so fast if I could have cared for him at home but it didn't matter, I

couldn't do it any more. I still cried a lot and did go for some counseling

but I think I would have overcome my guilt anyway. I am now OK about it

although I do feel sorry for myself sometimes. I keep busy and try not to

dwell on him. I visit him usually 4 times a week and my kids cover the

others. I did notice in the other home that I see the same deterioration in

most of the patients that I saw in Ray so perhaps that is a typical result

of placement or perhaps just the diseases.

You will have to make the final determination and it won't be easy but your

loved one will probably be OK in the home. You on the other hand, need to

weigh the cost to yourself vs the benefit to your loved one. The time you

have to spend with your mother will be quality time and you will be able to

give her loving care and let someone else take care of the difficult things.

I find that giving Ray 2-4 hours a day of love and caring visits is much

better than what I was doing when he was at home. I was never meant to be a

nurse and found it very hard day after day, night after night.

We are still able to bring him home for a night or a day or even a week-end

as long as someone is here to help me. He can not communicate well any

longer and is not able to walk by himself. He tries but he can't so I need

help sometimes. It is much better for me and he is getting better care than

I could give him at home.

Weigh the options and be honest in how you feel about yourself and the

caregiving duties, your health, your emotional stress and be fair to

yourself. Shop for the best home you can find anyway. Good luck and keep us

posted. God will Bless you for caring so well for your mother. Love, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Personally, I will set my hair on fire before I allow my mother to go to a

nursing home. BUT, my situation is different. My dad is younger and healthier

than my mom, and because I have an Internet business my time is flexible, thus

allowing me the freedom to spend three to four days a week with my mom so my

Dad has a break and can run errands, etc.

So, this having been said, you mentioned that your mother was diagnosed

barely a year ago? What med's is she on? How long do you think she was sick

before she was diagnosed? I ask about the med's because you might be surprised

what can be accomplished by taking the right ones and doing away with the wrong

ones. A year ago my mother was in a wheel chair and now she is walking, and

walking fairly well, with a cane!

Hugs, Pammie, proud daughter of the " Little Queen " , 77 years old, Diagnosed

with LBD in the fall of 2007, currently taking Exelon Patch,

Namenda,Avapro,Verapamil ER, Nexium, Tarazadone and Boneva.

**************Worried about job security? Check out the 5 safest jobs in a

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[Guest guest]

I think each one here who has someone placed, has gone through the struggle you

are going through.

And each of us have to decide what we can and can't do and for how long. Once I

put Mom in the hospital, they gave her so many drugs, she couldn't walk and my

home wouldn't work with a wheel chair.

It depends on who lives with her, how much help is available, and what her

abilities are, even though she has limitations. Or how much help you can afford

to get to help you.

I am sending the welcome list out for all the new people and it has lots of

information in the files on nh and how to make that decision. I will send it

right after I close this message. You may find some help in there.

Hugs,

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

When is it time to place in skilled nursing?

Mom was diagnosed with LBD in Jan. '08. In the past few months it seems to be

taking over her brain/body at a rapid pace.

Displaying Parkinson type symptoms, blank stare, shuffling gait, jerking arm

movements. She has all but stopped talking and when she does it is never a

complete thought.

She has lost 17 pounds in the past 2 weeks!!

She was hospitalized for Parkinson symptoms (being unable to stand nor walk) and

is now in a skilled nursing home to rehabilitate her body.

They've told me she will need 'round the clock care' when/if we bring her home.

She's lived with us for 2 and 1/2 years.

We are thinking she'd be safer there, slightly more stimulus there and she seems

to like it. There are times, I think she'd like to leave with us, but she can't

walk or stand alone. They do get her up and she's taking 10-20 steps with their

help.

At what point did you all decide to place your L.O. in a home?

Your experience and thoughts are greatly appreciated.

[Guest guest]

My mom was diagnosed in Dec 2008 with LBD, after having been treated for

Parkinson's for the previous 3 yrs. Her mental decline came very fast. She was

living alone and working full time up until Sept. At the end of Oct my brother

and I were summoned by our aunt to come quickly because something was very

wrong. We got to our mom's place in Calif the first week in Nov and found her

completely helpless and requiring 24 hr care. We moved her to my home in KS and

got her to a Neuro, who then changed her diagnosis from PD to LBD. Our intention

was to have her continue to live with me--we hired nursing care during the day

and I was her primary caregiver at night & on weekends.

 

Unfortunately, we had to move her to a NH home at the end of Dec. Her delusions

were causing her to accuse myself and my husband of false abuse, her sleep

disturbances were keeping me up at night, her refusal to cooperate with me with

regard to her care (showers, eating) was exhausting. Although I had complete

support from my husband and children and brother, they finally convinced me that

it would be best to move her.  Moving her was heart-wrenching, but I can see

that it was best. I visit her every day and we enjoy one another. There is no

more hatred and false accusations. The recent addition of Seroquel has helped

her anxiety level. A more consistent medication schedule has helped her

Parkison's symtoms. She has PT, which has helped her mobility and she has

opportunities to join others in stimulating activities. Although she choses not

to participate in most activities, I am seeing an increase in her willingness.

The chance to socialize at meals

seems to be a definite plus.

 

The decision to move to a NH is such an individual one. You have to look at what

is best for everyone involved. I would take my mom back to my home in a blink if

I truly though that was best, but I know it's not. Another important factor on

our side is that we have a wonderful NH in our tiny town--5 min from where I

work and live.

 

I'm not going to lie and say I feel no guilt. I do. My head knows we have done

the best thing--my heart is struggling to catch up. I wish you and your family

godspeed as you consider your own decisions.

 

In His Hands,

Katy--daugher to Jill; 69 yrs. old--meds: Namenda, Seroquel, Sinemet, Xanax

Subject: When is it time to place in skilled nursing?

To: LBDcaregivers

Date: Sunday, March 29, 2009, 10:25 AM

Mom was diagnosed with LBD in Jan. '08. In the past few months it seems to be

taking over her brain/body at a rapid pace.

Displaying Parkinson type symptoms, blank stare, shuffling gait, jerking arm

movements. She has all but stopped talking and when she does it is never a

complete thought.

She has lost 17 pounds in the past 2 weeks!!

She was hospitalized for Parkinson symptoms (being unable to stand nor walk) and

is now in a skilled nursing home to rehabilitate her body.

They've told me she will need 'round the clock care' when/if we bring her home.

She's lived with us for 2 and 1/2 years.

We are thinking she'd be safer there, slightly more stimulus there and she seems

to like it. There are times, I think she'd like to leave with us, but she can't

walk or stand alone. They do get her up and she's taking 10-20 steps with their

help.

At what point did you all decide to place your L.O. in a home?

Your experience and thoughts are greatly appreciated.

[Guest guest]

Katy, I hear you about having to place our LO in a NH. I was torn up over having

to place Don, my beloved husband. But, I had to. I could not handle it. All the

running it took to care for both of us for Doctor appointments, and grocery

shopping, and other errands. I stayed so exhausted that I was not able to cook

any longer. My daughter brought over her home cooked meals and we bought extra

Healthy Choice frozen dinners. It was food, and certainly easier on me.

Still, when he was using the floor, wall, and bed, at night, and making a

horrendous mess in the bathroom then I knew I could not run after it all the

time, plus clean up his bed, give him a bath, dress him, And on and on. When he

had the flu early on and messed the carpet from his room all the way to the

bathroom and threw up too, I was cleaning that on my hands and knees with bleach

on every fiber to be sure it was all cleaned up.

Later I got tile laid everywhere. But, by then it was becoming too much for me

anyway.

Knowing I am 76 years old, and have many health problems, I still feel twinges

of guilt. I know it's best, but I still want things the way it used to be, and

it ain'ta gonna happen. Nothing ever stays the same.

So move on with what is there, and try not to look at the what if's.

Love so much,

Imogene

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> Subject: When is it time to place in skilled nursing?

> To: LBDcaregivers

> Date: Sunday, March 29, 2009, 10:25 AM

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> Mom was diagnosed with LBD in Jan. '08. In the past few months it seems to be

taking over her brain/body at a rapid pace.

>

> Displaying Parkinson type symptoms, blank stare, shuffling gait, jerking arm

movements. She has all but stopped talking and when she does it is never a

complete thought.

>

> She has lost 17 pounds in the past 2 weeks!!

>

> She was hospitalized for Parkinson symptoms (being unable to stand nor walk)

and is now in a skilled nursing home to rehabilitate her body.

>

> They've told me she will need 'round the clock care' when/if we bring her

home. She's lived with us for 2 and 1/2 years.

>

> We are thinking she'd be safer there, slightly more stimulus there and she

seems to like it. There are times, I think she'd like to leave with us, but she

can't walk or stand alone. They do get her up and she's taking 10-20 steps with

their help.

>

> At what point did you all decide to place your L.O. in a home?

>

> Your experience and thoughts are greatly appreciated.

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