150,000-199,999 SparkPoints 187,169

Caregiving progress!

Sunday, April 07, 2013

These things have been needed for a few months (or more!):
1. new wheelchair
2. new and better patient lift
3. ways to handle increasing incontinence laundry, etc.
4. getting more help in general
5. handling rashes due to incontinence
6. managing meds--over 10 per day
7. decrease in overall body strength
8. driving to and from doctors, dentists, OT,PT, calf botox shots, haircuts, special clothing, dermatologist, and discussions with anyone who might have a grain of help for me.
9. finally, found someone who understands ALL OF THIS and for free tells me the best way to do things! I am so very grateful for her. Prayers were definitely answered! Friends who are well-meaning but having no more knowledge than I do can zap my energy quickly. I know what he needs. The problem is getting those things. The HOW? was always missing!

Believe me, getting all this done is very, very time consuming for the caregiver--me! emoticon And if you are caring for someone, you are well aware of the physical and emotional drain and the feelings of helplessness. Unlimited money would certainly help the situation.

Finally, we are making some visible progress. Having DH turn 65 has made a difference in the amount of help we can get for him. Medicare will now do more than before. Stroke was in 2006!

The agency for aides that I use presently for 6 mornings a week has no connection with Medicare or any way to handle the medical needs. The daily care is excellent and very flexible.But we need more than that.

A aide from a larger agency was added one evening a week. More than that breaks the budget.
A new patient cost me $750 but it has made life much easier. New that would be $6000! I was on a waiting list for over 2 years for the used one. Medicare won't pay for an electric lift!
A nurse was here for over 2 hours assessing our needs. She says we can now get more help.
Happy dance!!!
A nurse will visit twice a week for several weeks and then once a week till the medical issues are sorted out.
PT/OT will be at home --yeah--I won't have to drive hubby anywhere! The rule is if this nurse comes here, then PT/OT can't be out of the home. Seems to me this should be decided on the needs of the patient! But who am I to say! Out patient OT/PT has more equipment than in the home.
The wheelchair is ordered (3rd time!) because of problems with Medicare.
Rails are ordered for the hospital bed. Hope Medicare accepts this order! to check his back area, he needs to roll over in a very narrow hospital bed--and he can't roll both ways due to paralysis. So, rails are badly needed.
Seven years ago I had no idea what to ask for or how to get things. Lots of mistakes and delays (for years) happened! No, we had no social worker to coordinate things. He was not considered sick by Medicare disability insurance. So, magically before age 65 all the home care was supposed to happen-- with the caregiver figuring it all out!

I am feeling better. Now, dealing with new aides and new nurses, and a new social worker isn't a breeze, but I don't feel so alone now! emoticon emoticon

Share This Post With Others
Member Comments About This Blog Post
    Blessings Chris. I'm so happy you have help now!
    I know your time is limited but have friends who don't mind thrifting check thrift stores for those items you need in future. We get things like that in all the time!
    The canes we get & walkers we loan or give away to those that need them.
    Are you using Desitin or whatever it's called for babies diaper rash? And bagbalm is great for rashes & decubitus.
    Forgot how to spell all this nowadays!
    1808 days ago
  • 123ELAINE456
    I'm glad that You are getting the things that is needed to care foe Your Husband. The added help is a Blessing for You too. Have You tried using Depends? That alone would cut down on the Laundry. Medicare should pay for them too. Check it out and see what things like the Depends can help You out. Many Patients has a Catheter 24/7. But then You have Bladder Infections to deal with at times too. But the laundry would go way down. These are suggestions You might like to try. Make sure You take Good Care of Yourself, get plenty of Rest and Sleep and do things that You Enjoy Doing. Can't have You getting Burnout with All of This. You are doing Great. Keep It Up. God Blessings to Everyone. Have a Wonderful Week. Take Care. Hugs!!!!!!!!!!!!
    1808 days ago
    I hear you. obviously my Hubby is not as seriously ill, but does have many of the same problems. We have had visiting nurses, but they cannot change his lack of motivation. You mentioned the incontinence issue and I certainly haven't resolved that one. If you find a solution, please share.

    I am glad you are getting help and I pray life will become less stressful for you. No question...it is hard! emoticon emoticon
    1808 days ago
    When I was taking care of Mom, I went through the Commission on Aging, it was a county organization. They sent a man to come with a wheelchair accessible van to get Mom to take her to doctor's appointments, and I was allowed to ride in it. They even loaned her a wheelchair until she went into the nursing home.

    I think because of having Mom Medicaid Wavered, a woman was sent to clean her apartment twice a month. This woman was also licensed to bathe Mom, but Mom wouldn't let her.

    Dear heart, anyone that has been through it knows how hard it is to find a minute to try to call for help. I am grateful that you are finally getting some assistance.
    1808 days ago
    Chris so wish you were closer I have one rail--just sitting in my garage--people who bought the hospital style bed didn't want it. Bed had rail on one side only so they were just going to leave it against the wall. Tried to explain why it would useful to have it but they thought the $40.00 I was asking for it was too much--it was over $200.00 new. So glad that you have someone to help guide you through the system--wish I had had someone when Danny was ill. I was allowed a PSW once a week for 2 hrs. so I could go out without hiring someone. Allowed me to do groceries or have lunch with a friend. It's so important for you to take care of you! or you will end up burning out. I fought for a year to get that 2 hrs. & I think it saved my sanity as well. Continue to ask for all that you want & need so maybe you can do more happy dances emoticon emoticon
    1808 days ago
  • FROSTY99
    Chris I am so happy you are finally getting the help and items you need. I am so sorry it has taken so long and you got so little help in getting what was needed. I have been dealing with health issues for loved ones since 1980 so I can relate. I was blessed to find people to help me. I pray that going forward things continue to improve for you.
    1808 days ago
    So glad you're finally getting help with the things you need. Somehow, social services people think everybody knows what's available and how to go about getting it. So glad you finally have someone who can walk you through all this miserable process. I know the end result may not be ideal, But I'm sure it will at least be an improvement over your having to transport him all over creation for his therapies.

    God bless you, the Hubby and the lovely nurse. emoticon emoticon emoticon Happy dancing with you!
    1809 days ago
    So glad that things are falling into place for you, even if it's late in coming and slowly, progress is a good thing.
    1809 days ago
    You are making progress - I do know how hard this is and keep you in my prayers and thoughts all the time. (HUGS) Glad that you are at least seeing SOME progress and SOME changes. Maybe more will follow.
    1809 days ago
    Wow, being a nurse, I have often thought about how families struggle with needs at home. Now with him having a stroke, was he on disability, and not able to get the things? apparently so...
    Well, I'm glad for you... NO ONE who has not lived with chronic illness and being the caregiver can fully understand the weight of it all.
    I'm so glad for you. You will appreciate the help more than most, since you had to do without for so long..
    Thankful for what you have gained!!
    1809 days ago
  • CAROL494
    emoticon emoticon
    1809 days ago
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.