About to become a caregiver

[Fayelle]

My father has been given a short time period left with his cancer and hepatitis....So I am going to be moving him in with me to provide palliative care.....I hope that this is the right place for me to be as the messages all took a dive when the site did....

I am not new to BT but new to this forum!

At any rate, hello!

:)

Fay

[trekker]

Fayelle,

This is the place! ;) Will you have someone to help you care for your Dad? Are you going to be able to get hospice to come in? Can you get aides to come in daily to help with his personal care. Often they can also teach you techniques and ways to move the sick person so you won't hurt yourself. How does your Dad feel about the move? It might help if you could move something familiar in with him...a favorite chair or pictures that he has to put on the walls in his room. What about a hospital bed, shower chair, wheelchair, alternating air mattress...will he need these? Do you have a doctor to take over his care from his doctor if necessary? Are they going to order nurses to come in....we use VNA (visiting nurses)...if so, see if they can have one come in to advise you on some of these questions. You want to do as much of this as you can before he moves in as your time will become limited as his problems progress. Advise your own doctor that you are doing this so that if you need anything from your doctor you'll both be on the same page so to speak. If you have any questions, please post here as much as you need to.

Don't forget to take care of yourself. Get adequate rest, eat right. You mentioned that you posted here in other forums, do you have health issues?

[Fayelle]

Thanks for the response! I am so glad I am in the right place :) !

Yes I do have health issues, I have fibromyalgia, hypothyroidism, and diabetes. I also have a 6 year old son with a seizure disorder, but it is well controlled with meds....

I am in contact with hospice and they provide a whole lot of necessary services including someone to come in 3 times a week to check on things, and to bathe my father....They also provide 24 hour access to a nurse, as well as respite care if things become overwhelming or I need to go somewhere....At this point he does not need me to be there 24 hours a day and I can run some errands.....

When he flies out we are flying his dog out as well which is his best friend....

The hospice is providing a hospital bed, and they provide family support, a chaplain, emotional supports, a camp for the kids for after he passes to help them deal with the passing.....

I need to go to the medicaid office to see about transferring his medicaid benefits as well as reinstating his SSI benefits. He has been indigent for a long time, and I stayed just involved enough to make sure I knew he was ok. There is a complicated history involved. I refused to let him die in his previous living situation as it was and talked him into moving out here with me.

He knows he is dying, I pushed him into a skilled nursing facility until I could get myself ready to take him in, there were extreme concerns with his past living situation as he had developed another staph infection which caused him to seek medical attention where they discovered his cancer had returned and he made the decision to not go through chemo again.....He is actually happy about moving in with us and has a wish to make some things right from his past before he passes away. He is currently incapable of doing the things that had kept us away from him for so long. He also has significant neurological deficits from years and years of chemical dependancy issues and poor living.

He is only 54, but is neurologically a lot older. He has moments of paranoia, forgetfulness etc. So I am going to have to be very diligent about documenting things and patient about his memory issues.

I promised him he would die in a home with his dog and not in some facility. I was also concerned he would die suddenly and the hospital would not know how to contact anyone so they would bury him in some graveyard for the impoverished and we would just not know what happened to him....Luckily that wont happen now.....

I am glad BT came back up :), so that I could come here and have someone to talk to during this.....I am a little afraid of the up and coming situation. I have 2 weeks to prepare but I am not sure you can ever be prepared for this......

Fay

[trekker]

((((Fay))))

You have done very well in preparing for this at least physically, the mental/emotional fears will calm down once you establish a daily routine. The hospice will also help you with this. Many times families get into trouble because they don't prepare themselves physically and emotionally. You will do well I think. Your heart is in the right place and you will be so glad that you did this for your Dad. It will help you recover after he is gone that you mended fences and allowed the love you have for each other to flower again. Hopefully, your son will get to know his granddad so he will have nice memories of him too. He can help his grandad care for the dog and things like that.

Just remember that with your health issues rest and diet will be all important. Can you stock up on easy to make foods to help on busy days. Canned soups (lite/low sodium) for a snack or a quick lunch for your son? Splenda sweetened canned fruit and low sodium veggies. (I always add veggies to my soups to make them healthier, and spices sometimes too.)

Please keep in touch and let us know how things are going.

[empathy]

If, the two of you are up to it and o.k. with the concept, consider making voice recordings of your Dad (by himself or in conversation with yourself), as a memento to keep, after his passing.

empathy

ps. If your PC has a soundcard, you could record directly onto your harddrive, and need only a microphone. You may even be able to readily make your own CD(s) of the result.

[Fayelle]

Wow,

I am so glad I posted! Both of your input has been fantastic!

Interestingly enough my Dad has always been a musician and I never once considered the concept of getting his voice recorded.....I think I will have to see if he is up to doing a few songs togather like we did when I was little....Plus he has other children who have always felt distant and disappointed with him....Perhaps I can help him do something for each of them to say goodbye.....

Luckily my mother did this with her mother for a few years, plus she worked in social work for 15 years so she knew the kinds of things I needed to take care of before he moved out here.....

Thank you so much I appreciate this help so much!

Fay

[deejm]

Good evening ladies...Your articles regarding your families
being with you when they pass must be of some comfort to you, even tho it is hard to get past. My mom was in
a nursing home in Montana and I live in Virginia. When she was ready to go I got a phone call from the Nursing
home telling that she was going. I knew that this was the way things would go and had prearranged all of the services
My first hassle was with the airlines. As we are not on a direct hub it is very expensive for 2 tickets to Montana.I jumped in here to say that I will always feel guilty for not being there with her. I am the last one she had left and I think of her often and wish I couldf have been there with her, She has been gone 3 years now and I still think of her daily.
I didn't start out to do a biography, but will tell you that i
have Parkinsnon's disease, which is where most of the
emotions come from. Hope you have a wonderful day today.

[empathy]

I've heard that some (most?) airlines will discount/rebate your fare by half, if you can show a death certificate, when flying to attend funerals.

empathy

[deejm]

[FONT:cool: ]i HAVE HAD THAT COURTESY EXTENDED BY
DELTA,HOWEVER NONE OF THEM DO A COURTESY FOR CUSTOMERS ANY MORE. A DRY PRETZEL AND SODA
ISN'T TOO FILLING ON A LONG FLIGHT. HERE
I AM FUSSING ABOUT THE FOOD. HAVE YOU CHECKED
THE PRICE OF A TICKET LATELY???????????
HAVE A GREAT DAY. "AGE IS A QUESTION OF MIND'
OVER MATTER,iF YOU DON'T MIND, IT DOESN'T MATTER
DEEJM

[deejm]

I wrote the little note and sent it off to
l somewhere. We were discussing the cost of airline tickets, and they are out rageous right now. My husband and i have family in Mont, 11 gandchildren who are GROWING AND FOUR GREAT-GREAT-GRANDCHILDREN'
.iAM TOTALLY WIPED OUT.
tHEY TURN PALE WHEN YOU MENTION DEATH OR BRIEVEMENT REMBURSABLE;yOUR 6 PRETZELS AND 1 SODA IS ALLYOU GEt anymore.Must go, i
have parkinsons disease and need my rest
"Age is a question of mind over matter, If you don't mind,
it does't matter."Satchel Paige"

good Night
deejm



























wee

[Fayelle]

Unfortunately that is true,

They no longer offer bereavement packages....I found that out when I tried to fly home to be with my family for my fathers service since most of his family and friends were in another state.....

The claim is that their fares are stable enough that they don't need to offer those packages anymore.....Their website states as much.....

However flights still run around 800.00 for anything shorter than a 2 week notice....The only thing that got my father out here at a reasonable rate was my husbands business sky miles....And then we still paid 222.00 after his sky miles.....

However other providers are much more reasonable as long as you do not mind a layover...They are about 100.00 to 200.00 cheaper than delta.....

go to any of the cheap fare sites to find out the best fare of the day.....Check often because fares change frequently....There are some programs available through the IM chats that update you about changes on flights.....

If you can book a flight in advance I have gotten them for around 185.00 round trip before....If bereavement is an issue its probably best to try to start saving if you can manage it so that you can afford that last minute cost....Or if you can drive and don't mind cheap hotels that might work too....

However don't count on bereavement packages anymore, they were difficult to get anyway especially since it required an actual death certificate....My fathers cost 10.00 for the first and 5.00 for each additional copy I wanted.....If you are not directly recieving a death certificate it might have been sort of a pain to attain anyway.....

So unfortunately the bereavement package did go the way of the dinosaur and the delta in flight meal......Although I think they do still provide meals for long flights, I believe my father got one.....

Fay

[Boopers]

I just wanted to post and say that I applaud you in being a caregiver to your dad. You will never regret it.
My Mom was diagnosed with pancreatic cancer five years ago and wasn't given much time to live.
I moved in with her and took care of her with Hospices help.
She lived a month after I moved in. She fell into a coma two nights before she passed.
I miss her terribly.
But, what I wanted to say was, as you and your dad are spending time together, the best thing you can do for him is listen. I listened to my Mom while she talked about anything and everything. We laughed together and we cried together. Those are memories that you will be able to hang on to after your poor father is no longer with us. These memories will get you through the tough times.
I wish you and dad all the best and hope that his last days are as pain free as they can be.
Hugs,
Linda