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lisaann1170

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Jun 9, 2009
Messages
106
Reason
Loved one DX
Country
US
State
WI
City
Milwaukee
As soon as Dad was diagnosed, Mom told me she couldn't handle all of the medical and financial stuff. I get that. Dad was always the family manager so for her to deal with his illness plus learn all of the new medical "stuff" and take over their finances is overwhelming. So, they moved near me. I know PALS moving after diagnosis is not usually the answer, but it was for us. Dad is happy with the choice and I've been able to take over when Mom was unable to handle whatever came along.

Dad had been living at home until this past Friday, and Mom was his primary caretaker. My job is to coordinate medical care and to manage her finances. Dad's primary care physician and the nurse who visited weekly determined that Dad's care is too much for Mom. She's arthritic, has back problems, and is generally not in the best physical condition to care for Dad. So, Dad was admitted to the VA hospital. He doesn't want to be here, so Mom doesn't want him to be here. She's had some in-home assistance provided by the VA, but she really needs someone else there 24/7. The doctors are hesitant to release him back to her. I think it would be very unwise without full-time care in place. This makes me the "bad guy" in this triad (me, Mom, Dad - no other siblings).

I'm the go-to person when the doctors have a question. I'm overwhelmed. I really want what's best for Dad both emtionally and medically, but it's a tough decision. Mom doesn't want to make those choices. I fear making the wrong choices. I feel guilty whenDad's unhappy, thinking I should do more.

There's talk of hospice. I hear about nursing home placement. I have a call in to the ALS Association for advice on home care. I'm waiting on calls from Dad's neurologist and the social worker.

From a purely selfish point of view, I work full time, I have a 5-year old, and I'm in graduate school. I'm having some trouble keeping the balls in the air but I really want to do what's best for Dad. It's getting so hard to see what is best.

Dad's breathing is increasingly more labored and the morphine flows more freely these days. His decline has been so profound in recent weeks that it breaks my heart.

Anyway, that's my train of thought as I sit here and watch Dad sleep. This is really, really hard. And, just when I think it can't get harder, it does somehow.
 
Oh Lisa, I'm so sorry. I'd recommend a serious look at hospice. My mom had 24/7 hospice care in the final weeks of her life. They had an LVN there all the time to administer/chart medicine, check vitals, etc. While she was still coherent and mobile, they would take her down to the dining room for meals (she lived in an assisted living apartment), keep track of how much she was eating and at the same time they provided us with support and an ear. As her condition deteriorated, they were there for sponge baths, would contact the doctor if they felt the morphine wasn't doing its job, etc. In mom's last days, those nurses became like part of the family. I seem to be giving the "we can't do it all alone" speech a lot today. Maybe because I've been giving it to myself too.
 
it gonna be hard no matter what you do and regrets as well , good and bad on anything you do in life so , all you can do is the best you can .. and do it from the heart .. dont take on more than you can chew it just wont work out good...best of luck
 
Lisa,
I am so sorry. tdamess is so right about everything!

Make sure it feels right to you and YOU ARE DOING THE BEST YOU CAN! I can feel your heart break with the desire to do your best.

I am my mother's primary caregiver and she has recently gone in to the hospital. She desperately wants to come home, her sister and a few friends want her too as well making me the bad guy.

We have been referred to a hospice and they have people there 24/7 that are sensitive to the needs of everyone involved and take care of your loved one. My biggest reason for suggesting this is because you have your plate full. Being a care taker is emotional exhausting and why waste that energy on frustration when you can arrive in a calm and positive (as possible in this time) and spend time bonding not arguing and negotiation. It also sounds as if your mother physically has some limitations of her own.

I know you want to keep your dad as happy as possible and I really want to keep my mom happy and would love to spend quality time with her not 'being her worker'. I wish I had a better answer for that one....I'm really struggling with it my self.
I really hear your sadness.You are one brave girl! Please remember to take time for your self(how about a non smoke smoke break? just sit breath in and out and think of nothing other then the clouds in the sky?)
big hug
 
What kind of directives has your dad given? Has he filled out a living will or DNR? What kind of decisions has he already made (i.e. vent/PEG etc.)? What kind of life insurance policy does he have? I ask this last question because they can often times contain riders that allow you to draw on the face amount early in cases like ALS.

Sounds like you need help! MDA and ALSA are good sources to start for some answers to getting you the help you need.

I'm sorry your dad isn't doing so well.
 
Oh Lisa, my heart really goes out to you hun! My goodness you have your hands full....mom, dad, a 5 year old, working full time and grad school? Do you have time to sleep? You have got to get some help sweets! You must know that you are never the "bad guy" by making any of the decisions. Your heart is in the right place and your parents are so lucky to have you to take care of them! My hope for you is that you are able to get hospice to come in and help 24/7, life will be so so much easier for you and you will be able to get some of this huge load of your plate. My prayers are with you hun. You are such a strong woman, hang in there and if you need to come on here and vent, we are all here for you!
Hugs, Kari
 
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