HELP! Caregivers, I need some advice!

My 22 yr old niece has a unique (except for our family) genetic crippling disease that's took her from a healthy mother of two beautiful and gregarious children to totally bedridden in 2 short years. I've watched the same disease take my only brother and sister and finally my mother.

My niece can still feed herself if the food is cut up and has an active texting/facebook life, but everything else must be done by myself and my 87 yr old father.

As her condition worsens, I am in need of techniques and strategies to make care for her at home more feasible. I wanna be there to the end if possible--no nursing home--but the increasing complexity of doing it at home is scary and emotionally hard to deal with

My life and career beforehand was active and satisfying, but please understand I'm grateful to be here and to help. That doesn't mean I'm not experiencing some cabin fever however--I can't leave for more than 2 hours--so any advice along those lines would be greatly appreciated as well.

Home-Health does come in twice a week for 1 hour for bed-baths and I'm grateful for that, but they still need me present to physically move and arrange her.

I don't know if this is the right forum for the subject matter and I usually don't reach out for help, but I desperately want to do a good job but my spirit is getting somewhat weak and confused.

My main dilemma: Efficient techniques for bedridden patients--bowel movements and all--and how to watch someone you love deteriorate and still be able to help as their body totally shuts down and not become suicidally depressed myself.

Sorry for whining, but I really need some advice. Thank You.

First of all, that is a very heartbreaking story, im sorry to hear what your family has to deal with.

This is probably not the advise you want but the advice you may need. If Jesus isnt in your life or hers, i would start there.

I hope you find what you're looking for.


Peace

GUT, my heart goes out to your Dear Niece, and you. I spent the last 3 years of my Dear Aunt's life living with, and taking care of her. She was 76 when she did pass, in full sharp mind, alas her body gave up.

We did have Hospice in for the last 6 months. She passed in her own bed, in my arms laying next to her.

Ask away GUT. I will help in any way I can. Money was not an issue, and I don't know your situation. I had the bathtub you see on tv, the one with a door for easy access, installed for her. I had the doorway of her bathroom widened so I could push her wheelchair right up to the tub, and ease her in. Before she became wheelchair bound, I had her physical therapist come to her home, and mark on the walls where to have oak handrails installed so she could help move herself about, should she want to.

I found several agencies that charged by the hour, to come sit with her during the days sometimes, so I could get out for more than a couple of hours at a time. Any Hospice Agency has a long list of retired nurses who love to get these type of sitting jobs. I'm sure you can find some in your area. If you'd like, pm me the town where you are located, I'll be more than happy to get a list of certified care givers and phone numbers for you.

Remember to take care of yourself. Only if you take care of you, will you be able to continue to give so much to your Dear Niece.

Bright Blessings, and Prayers for Strength, Clarity, and Serenity for you.

Ask the home health care folks for more resources. They can get you in contact with a social worker or someone who can give you good advice and help. I am so sorry that you are facing this. You are so thoughtful and compasionate and loving for being there for your neice. I will keep you both in my thoughts and prayers.

I'm sad to hear your story.

When I worked in a nursing home and later, an assisted living facility for developmentally disabled people, we were taught to give the residents whom may have these types of gastrointestinal problems the I Love You Massage. You can ask your nurses about it.

I ended up also caring for my mother, grandmother, and grandfather

Another important thing is how you lift her when you have to move her from her bed to her chair (chair, toilet, couch whatever), make sure you do it properly. I was taught to get them into a sitting position facing you then squat and lift them by wrapping your arms around their lower back as if you were hugging them. Then lift them with your legs (not your back!) and use a pivoting motion (once you both are comfortable in the grasp) to get them to their destination.

That method of lifting will save your back a lot of stress...you can ask the nurses to show you how. Even if she's light, it's easier and safer on both of you to do it like that. Always make sure your wheelchair brakes are locked during a move.

Of major importance is your sanity. Make sure you can get some kind of respite care. Have someone come stay while you go out and do something to relax. Try to once a week or two! There are also services for this need....look it up.

Good luck...I'll send you and your niece some mental cookies.

reply to post by iSHRED
Thanks, truly thanks, iSHRED. He is...every knee shall bow and every tongue shall confess undoubtedly, and, btw, I really enjoy your posts here, so it's really nice to hear from you.

But I've been kind of feeling that maybe he wants me to reach out. Mebbe, though, I'm just not relying on him enough. That thought did hit me after I hit "Reply."

I'm a believer, though greatly flawed. Thanks for the encouragement and the courage of testifying to your beliefs.

I hope that my inner man isn't looking for sympathy in the deceitful way of the heart, but rather some wisdom that will help me be a better man.

Thanks again, bro, your encouragement is probably more valuable than you might think.

reply to post by The GUT


[color=dodgerblue]Firstly, I am sorry to hear this. Very, very sad.

My best advice, is to not forget about yourself. Caregivers often focus so much on the person they are caring for that they forget to take care of themselves. If you aren't taking care of you, you won't be as good for her.

See if other family members/family friends can step in to give you a break from time to time.

Maybe hire a house keeper to come in once a week or every other week to do the main cleaning. My bestie charges ten bucks an hour and typically spends no more than two hours at each client's house. Its an inexpensive way to take some of the pressure off.

Cook in bulk. The freezer is your friend. Double or triple meals you are making and put the extra in the freezer. It can come in handy on hard days or days when you are very tired.... or days when someone else is sitting with her. It's no more difficult to make a triple batch of pasta sauce than it is to make a single, and it freezes well.

Just don't forget to take care of yourself. You deserve it and in the end it will enable you to take better care of her.

reply to post by Destinyone

Ha!...didn't think you would see this, but for some reason you were on my mind when I anticipated replies. Can you feel the love?

That you have experience in these matters further explains the compassion and wisdom that has fully drawn me into being one of your biggest fans here at ATS. Can't hide quality character from me.

Plus the fact that we're both world-class smart-alecks...especially when it comes to the blow-hards and liars that try and and gain a foothold here on the boards now and then. May they R.I.P. lol: I can be "Frank" that way can't I?

Funds for remodeling? Yes and no depending. I'ma definitely U2U you. Thanks, Doll.

reply to post by Night Star

Thank You, Night Star. We do have a very sincere social worker who is doing her best to help, but red-tape and long waiting lists are a reality.

I love that girl though for all she tries to do and she always tells the truth about the realities of our situation. Rare in Govt. agencies these days.

Your thoughts and warm heart are appreciated.

reply to post by MzMorbid
You've obviously done your share of caregiving and I feel a little small for threading about my situation. I was already basically using--after much trial and error--the technique you described for mobility assistance.

Between this reply and my last, however, I had to go help with a potty run and the tip about the lower-back support made things easier as I had my arms higher up before. Made Dee-Dee happier too.

Thank You!!

reply to post by The GUT


Yes, we have one of those inexplicable bonds

The suggestion of a housekeeper every couple of weeks, go for it. It was a lifesaver for me a few times. In that it brought someone into my Aunt's home for her to talk with besides me. You are giving so much GUT, but, I also know you are receiving precious gifts from your Niece. Her time. Her memories. Her Love.

Take Care Sweet Pea...

Des

reply to post by The GUT


Don't feel small at all. It's a devastating experience. You'll do all right, don't worry!

Glad I could help.

reply to post by daryllyn

Great advice. I am learning about the "make more, freeze for later blessing of a technique. Just lately learning and it DOES make a difference.

Nice to see you here too. I'm one of your secret & fairly frequent starrers. Thank you so much for the tips and encouragement.

reply to post by The GUT

Home-Health does come in twice a week for 1 hour for bed-baths and I'm grateful for that, but they still need me present to physically move and arrange her.

Please get another home health agency!!! I was mom's caretaker for the last 2 years until her death August 2011 and whomever came in to bathe her did everything!!! I watched, somethimes helped, and sometimes ran a quick & needed errand!!

If her illness is definitely life ending, you can ask to have her placed on Hospice thru the agency. Many people are on Hospice for YEARS!!!!!

I will post more later as I need to read everything, but this caught my eye and wanted to reply immediately. Most, who give bed baths to ill people are specially trained and prefer to do it themselves - as they are quite efficient in what they are doing.

I will be back tomorrow to see if I can add more to help you that I learned from my personal experience with caretaking!!

Take care & Bless you!

If you are in Australia I have a wealth of knowledge to share, but I suspect your in the USA.

All I can say from my experience as someone who volunteered helping those in need, for your own sake, do NOT do this alone. There must be some way to get some form of home care from the Govt. A couple of hours a week is not good enough from them.

From my volunteer experience, I have a good idea of your pain, I saw the total relief on the faces of the caregivers (family) when I picked up their 'dependants', & I saw how their shoulders slunk when I dropped them off at the end of the day. For each it was just one day a week, but it helped SO much, even if it just meant they (family) had the chance to do shopping/washing etc. If she is bed-ridden, I guess that changes things a bit.

It is far from an easy job & anyone who hasnt done it has no idea (& I could go home at the end of the day), nomatter the condition, & all I can say is, you cant do this alone, even as a family. Again I'm speaking from an Aussy POV, but the only reason I still don't volunteer is due to Govt funding cuts, so I can understand this is probably most of your problem.

For your own good, & the good of all those around you, do NOT take this on alone, I did just 4 hours a day (1-4 days a week) & it wore me out, & I didnt have to do any of the 'medical/hygene/toilet' things.

Be proud you do as much as you do, but know you cant do it all. I worked in (again volunteer) rescue years ago, & the 1st lesson is (as in any 1st aid course), do not put yourself in danger, you cant help if your dead ! I know it sucks, but you must look after yourself first, if you dont, your niece will also suffer, & believe me, even a 90yo with dementia can tell when your struggling.

I wish you the best of luck, honestly, but you cant help her if you fail yourself. Keep her socialised, so I guess that means get her friends to visit. They dont need to change a bag, but saying hello for 30 minutes once a month is not much to ask of a friend. As soon as social contact is lost, people die, & I must add, this was the same for those whose family stuck them in a home when our service shut, those put in nursing homes actually died quicker than the few who could stay at home, & it wasnt due to a lack of care, but social life. She NEEDS something, anything, to look forward to !!! It's a big claim, but one I can sadly prove. If she is on the net, your way ahead, those I helped had no idea about computers, so if you see her losing her ability to use a mouse, stay ahead of her issues & find a solution before it's needed. Look at Hawkings, he was meant to die decades ago, but he kept active.

I know this wont help your workload, but how about giving her something to do on the net, a course or something. You never know, she may be able to use Skype to counsel others in need. I know it wont help the hygene tasks, you have several issues to deal with, but if she is busy in her own mind, believe me your emotional load will drop.

I must add, do not feel guilty about a nursing home, one day, guaranteed, the care they can give will surpass your ability. Start your research now (I'm 40 & already know exactly where I want to go). There are some good ones out there, finding them is the issue.

Stay strong, & PM if you want.

Originally posted by The GUT
reply to post by Night Star

 

Thank You, Night Star. We do have a very sincere social worker who is doing her best to help, but red-tape and long waiting lists are a reality.

I love that girl though for all she tries to do and she always tells the truth about the realities of our situation. Rare in Govt. agencies these days.

Your thoughts and warm heart are appreciated.

Has your helpful SW told you about a very little known program thru the gov that will pay YOU for some of the things you are doing - even if it is your choice?? Dept. of Elderly & Aging has a deal were they do this - they did for me.

I KNOW something is there for younger people with terminal illnesses that is how I knew about it. Mom took care of my brother until his death @ 36. He had end stage renal failure, but she was paid for 25 hours a week to caretake him & did not even live with him. They would rather pay a family member than have said people placed in a home as it is more cost effective. I believe it is called FAMILY CARE. People rarely know about it because, trust me, they do not advertise!!

More later.............

reply to post by Champagne
Thank you, Champagne, Im looking forward to the benefit of your experience! I really--really--needed a second wind and tonight has been a blessing that way.

Thank you ALL again.

reply to post by SNAFU38
I've always had a warm spot in my heart for you ballsy and hyper-creative Aussies, and now I know more fully why. Wow, thank you for taking the time to make some significant & cogent points that are particularly relevant to our/my situation.

But also thank you for what you've done for others. And in our instance here, I really appreciate your candidness. That's a trait I fully respect and admire. A mature expression of concern and care.

Yes, lets PM please . My embarrassment at showing my weaknesses is giving way to the love I'm feeling from my ATS family.

I can feel the unconditional love from the responses here and I'm genuinely fairly overwhelmed. As crazy and cold as this world can be, those facts can never negate the power of love and the decent folk that propagate it.

reply to post by The GUT


We Aussies will help anyone in need, so long as they show respect, contrary to what even our own media claims (racist for flying the flag, BAH). Some call us blunt, but as we say, 'Call a spade a spade..' We're generally too lazy or too drunk to remember a lie

I sent a U2U, we probably both have more to share than we want to on here.

Sorry to hear about your niece. But there are some wonderful people out there that work in home health care. I did it for quite a few years. I loved knowing that I made a difference in sometimes life. Alot of times insurance covers home aid...