HELP! Caregivers, I need some advice!

The Gut, I am so sorry about your neice, prayers for her health and for you lifted up for the grace to get you through this.

I do have some advice. I took care of my 99 yr old grandmother, who did fine on her own till a nasty fall broke her ankle and she was bedridden for 1.5 yrs till her passing. My number one recommendation is hoist chair. Its a flat piece of canvas with grommets in each corner. The hoist itself looks like an engine lift. Wheels roll under the bed with the extension arm over the top. We would bathe her after breakfast and dress. Would roll her to one side, place the canvas folded in half under her, then roll her back the other way and smooth it out. Then we would raise the head of her bed and attach the two chains each side, one at shoulders one at thighs and crank her up till she just cleared the bed, swivel her feet out, then ease the hoist out from under the bed, having the wheel chair at the ready, then center her up and ease the lift down. Wheel her to her recliner then repeat the lift from chair to recliner. Was extremely easy to do and oh my gosh saved everyone's back!!! My mother who is terribly arthritic was even able to transfer her. Home health provided the hoist lift.
I can go on and on about her care and will add to more posts. U2U if you need to, but sharing info is what gives us ideas. Will think through some more care giving and let you know more laters.
Take care of yourself is really important too. Much love, your neice is lucky she has you to help her, and you have us to help you. By your side, SunflowerStar.

reply to post by The GUT

[color=dodgerblue]You are welcome (:

I am a mom of 2 little ones, a part time college student and am currently caring for my other half who was in a bad car accident a little over a month ago. Sometimes after all day of just.... everything, the thought of dinner can be too much! But it has to be done whether you feel like it or not. That's when the freezer comes in handy.

One thing I like to do... is roast 2 whole chickens. I will use one for dinner and shred the other one and make chicken noodle soup, chicken taco filling, chicken pot pie, or even chicken salad.

You can make a pot roast and use the left over for beef vegetable soup or BBQ beef sandwiches.

You can freeze chicken/beef stock into ice cube trays, put them into baggies and add them to things for extra flavor.

I thought I had more ideas for you than that!

Freezer Recipes

reply to post by spadedjuggalette
Thanks for the encouragement, spadedjuggalette...and I have to say that's one of the coolest and most intriguing screen names I've seen in awhile.

Not much I can add to the good advice already given here. I was a caregiver for mentally/physically challenged for over a decade, and I also had to take care of both my parents as they deteriorated into nothing at their ends.

Definitely take care of yourself, because if you are junk, you are no good to anyone else.
Find decent support to help you out and give you time to rest. I don't know what agencies are in your area, but there are volunteers out there who will give you aid for free.

I don't like to see people going through this kind of stuff, I hope you find some comfort in all of this, it's a hard task to be burdened with when family is suffering.

My thoughts are with you my friend.

reply to post by SunflowerStar
SunflowerStar...I can already tell your ats monicker fits you. I'll be looking into the hoist today.

Thanks for taking the time to explain it so well.

reply to post by JibbyJedi

Just you stopping by is an encouragement, JJ. I feel the love.

It's nice to learn more about some of y'all too. ATS Characters with Character!

Did you find out if home health would provide the lift? Also there should be respite care, meaning someone would come and stay or she would go to a facility for 2-3 days. My aunt takes care of my uncle who is in advanced Alzheimer's, once every 3 months, he goes in, and she can go visit her grandchildren etc.
When taking care of my grandmother, they supplied medically related items bandages, rubber gloves for changing her. They did not supply the adult nappies however. Had she been in the hospice program they would have, but she wasn't at the end stages as expected.
Do you need suggestions on how to change her? Has home health shown you how to do that for best practice methods? One more question, what areas of her care most concern you, that we could give you our experiences for reference?

reply to post by SunflowerStar

Yes, good news: The hoist will be here early next week and the paperwork is being filled-out to switch from standard home health to Hospice care.

Thank you all soooo much. I'll have more to report later.

Someone sent me a private message that stated in part," ...she probably gets tired of looking at your face all day long too." I told her that and she laughed so hard. Big belly laughs. It did both our hearts good.

I've been in much better shape head-wise these last few days. So I MUST say it one more time: THANK YOU ATS FAMBLY!

reply to post by The GUT


I am so happy your week went so well! Big hugs to you both!

Kewl, I have a new brother. Take care.

reply to post by The GUT


Love and respect to you brother for your noble deeds! It takes alot out of you I know, and asking for help takes more courage than most will admit. My hat is off to you sir.

reply to post by Aliquandro

Thank you, Aliquandro, I'll check out that link now. Speaking of sigs, seeing yours and your avatar here put a smile on my face and was a real caffeine shot for my soul!

Not just any Art can do that to me.

I'll leave the following link here for anyone that stops by and wants a visual "pick-me-up."


Visual Uplift!

reply to post by The GUT


Thanks for your support! Wanna be my agent? Yeah I figured out the image link trick for sigs last night, my html is a bit rusty.

Back on topic, I hope that link has some kind of useful info. And at the current moment my roomate is pissed as hell at me for silly reasons, so I will wait to ask her anything yet.

I like the suggestion someone made about cooking for multiple days, and since you know my cooking style might be compatible with yours here's my suggestion.

Do things like a BUNCH of roasted vietnamese spiced chicken or pork (anise, garlic, lemongrass and brown sugar rub). You then make up a big batch of Nouc Cham sauce and some rice vermicelli noodles (al dente). First night you make the meats you serve it hot on steamed rice with some of the nouc cham and some sliced cukes. Then you can take the meat cold and make bahn mi sandwiches, then take even more cold meat with the vermicelli, nouc cham, cukes, carrots, and some lettuce sprinkle with cilantro and peanuts. And if youre adept and get bored of those dishes you could get some rice skins and roll the meat up cold with the vermicelli and some mint and/or cilantro and make fresh spring rolls and dip in nouc cham.

I love cooking but I also love saving some time and energy. I just finished watching most of The Shark Tank episodes and was disappointed I havent seen any real caregiving devices, sad.

I apologize if I just made everyone hungry

How are things going? Just wanted to see if things are ok. Prayers for grace to you.

I really, really admire you for accepting this task. You are truly amazing. Godspeed to you both.

The GUT
Ask your social worker about getting in a home health and personal care aid into the home they will come in for more then 1 hour per day Hospice Agency's will also help ..

My home health aid comes in 4 hours per day to help me she does everything and is a life saver for me ..I'm not as bad off as your niece i get around just fine but there is help for younger people with terminal illnesses they sure helped me..

And most insurances covers home aid and they will also pay you if your doing most of your nieces care when i was married they paid my husband for my care for so many hours per day ..

Also ask home health they will sometimes help you with the things you need to lift her and wheel chairs but you have to ask they wont say anything unless you do..

I know this is very hard on you and its very hard on her also, and i have allot of respect for you and what your doing ..Please take care of yourself so you don't burn out there is help out there! My thoughts are with you and your niece..peace,sugarcookie1

reply to post by The GUT


I don't know of anything I can do or say to help my friend and that feels real bad. I will say a big time prayer Gut.

Sending you the best.

Randyvious

First off, I am sorry for your having to go through this and I wish that it helped more than I know it does. I am amazed at your loss, and admire your ability to still be grateful for the things left in your life. You are a stand up guy for sure and it is admirable that you want to try to avoid sending her to a facility so she can be in the comfort of her home, closer to those who love her most.

I helped my mother care for my grandmother who was dying from liver cancer for almost a year until we could no longer (for her pain control) do it out of the hospital. As hard as that was, neither of us regretted it.

I can not stress enough how important it is that you give yourself breaks in her care. We all want to be superman and do everything on our own... because no one can love them like we can. Right? But it gets emotionally exhausting as well as physically exhausting. You need breaks, even if it is only an hour a day. You need to take care of YOU to take care of HER. If you remember that, then you will be more likely to not burn out. Don't use those hour breaks to always do some other work either. Sometimes you just need to sit down and BE...

As for depression. There is really no way you can avoid the sadness or the hurt. Watching people we know just fade away is the most painful experience we will ever have to face. Again, this is where you need to take care of you as well as her.

She loves you and would NEVER want to think it hurt you to watch her like that. We can hide it from our loved ones but we need to remember that we would not want them to feel the way we are either.

Comfort yourself with the thought that you are giving her the biggest gift you could possibly give her. KNOW that she would not want you to have that gaping hole in your heart. She would want you to live a happy life for you... and her. Her leaving this world knowing you will not cease to exist mentally would be just as comforting to her as most everything else you can/will do.

Feel your feelings. Cry, rail, scream, fall to your knees. You have traveled a hard road and if you keep all that in all the time, you will destroy yourself. It is a miracle that you still have it in your to want to do this so badly after all the loss you have suffered. There is no shame at being hurt, pissed off, confused, questioning, etc.

I will keep you and your family in my thoughts and prayers, and want to tell you that I am in awe of you this day. Truly.

I am facing a similar issue with my sister but they have been unable to diagnose her if you don't mind me asking what is the disease your niece has? I am searching for answers I don't know what to do. I am only 26 and have my own family and but all of my family passes away young so there is no one else to care for her but me and she is now bedridden and immobile and has lost control of bodily functions. I just don't know what to do...

a reply to: ayame

I am soooo sad to hear that ayame and I know how alone and helpless you must feel. I also know that even though it's a labor of love, that it's also an incredible amount of work/sacrifice. Do you know how to check your messages here? I will message you some info.

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