Exhausted

[LauraW]

Hi, everyone. I just need to vent. We brought Mom home from the nursing home 2 weeks ago or has it been 3...I don't know, I am so tired it all feels like one big day. Well, found out Medicare will not cover the cost of a nurse because she is on the vent. She does not qualify for Medicaid. We can't afford to pay for the private nursing or she will qualify for Medicaid very quickly. So many family members offered to help and now....well, goodness, I just want someone to do some laundry or rearrange my dishes. We just moved in to a new house before mom came home...literally DAYS before she came home. Dad is living with us too (my husband and I). So, I am not even unpacked from the move. Where is everyone who said they would help. Whenever I call, they have other things to do but "will call" when they can "come to visit". I don't need visitors, I need helpers. My husband is great but he works full time. I have taken a month leave from my job, which it actually looks like I won't be going back to. I have an aide from the nursing home (we actually know her) who is going to help out a couple of days a week. Not so much cost because she is not an RN and she is a friend. But she has to be trained on the Vent. What is wrong with Medicare...I don't understand it all. They would pay if she were in a nursing home, they will pay for her equipment, but they won't pay for a home care nurse. I am worried that I am not going to be able to do this all. I have to be the nurse and the respiratory therapist (which we have a great one...she is on call 24/7). I am just so tired. I actually went to the gym and just swam in the pool yesterday while my husband stayed with mom. But the whole time I kept watching the clock because he had to be someplace so I had to be home at a certain time. I got home and was more stressed then before I left. Thanks for listening!

Laura

 

[DgtofTNfan]

Moving into a new home, caring for your Mom, adjusting to having both parents in your home, maybe leaving your job. You have a lot of stressors. So vent away.

I read your post and think of the families we sent home from our facility with loved ones who have extensive 24/7 care needs. There are friends, family and church members that are there and offering help but as you said the frequency starts lapsing as life goes on for other people and the families are left on their own.

The resources for dependable help in a situation like yours are just not there. As you said Medicare has limits and only covers limited nursing at home. (Medicare does not pay for long term care in a nursing home either just up to 100 days). Medicaid has financial restrictions that not everyone meets. I wish I had a solution for you. In KY there is a Home and Community Based Waiver program (one of the title programs includes ventilator dependency in the home) where the income limits are a little higher than regular Medicaid so I am hoping the nursing home has already discussed this with you if it is available in NY.

Looking at resources in NY, here is the website for "Consumer Guide to Community-Based Long Term Care"

http://www.health.state.ny.us/health_care/medicaid/program/longterm/

Your example is the reality of the situation of caring for someone at home on a ventilator. Being on a ventilator is more difficult to arrange care. Agencies are expensive and there are liability issues, etc. for life support so that you have to have a nurse with certain credentials and that level of care costs much more out of pocket. Hiring someone individually is cheaper but requires training and there is no back up if they are sick or can't come to the home for whatever reason.

Having said all that, there are families that make it work. It is an adjustment and sometimes the options are creative and individualized to what works for them.

You and your husband have made quite a commitment to your parents. A couple of weeks is a short time in the scheme of things. I am hoping that with time you will find some help, creative options and adjust to having your Mom at home.

At this point my Dad is adamant that he does not want a vent and he has declined quite a bit in the last 2 weeks. It scares the hell out of me.

I wish you and your family the best of luck.
Dana

 

[BethU]

Laura, I can't believe the load some of our caregivers are carrying. I can imagine that you are totally wiped out. I hope you get some relief soon ... you can't do it all alone.

Dana's suggestions were good ... I hope others help you find a solution.

 

[hopingforthebest]

Medicare in USA

Laura

I read your post and feel for you. My husband is on bipap 24/7 and this is his biggest concern is the care issues and lack of support that USA provides with the Medicare for vent/trach patients. If you read Joel's (moderator on forum) posts of vent, they are wonderful and I am sure his wife gets some relief when she needs to go out or get a break, as they live in Canada. So it seems, that socialized medicine has its good points. My husband, the PAL, thinks differently but he does not care to read the posts of this forum. I have never prayed for money or financial gain, but worry how we would do it if my husband did get trach/vent.

I will pray that famiy, friends, new neighbors, church people, help you out with getting trained to relieve you with your Mom.

Take care of yourself too.

Patty

 

[sharonca]

Laura - as a pALS who suddenly need more care I really feel for your family. I have a "share the care" group and it has been a Godsend. Have you thought about calling or writing each of those people who said they would help and telling them you really do need their help. Tell them what they can do for you. Do you need help with laundry, meals, food shopping, other errands. Maybe not many people will volunteer to work with your mother alone but if they are around doing things when you are there they will get more comfortable with the vent. If they say they can only come visit them say about about - and say a day and time. I used to have parties for my mother who had dementia and invite her friends and relatives. They had trouble visiting her alone but as a group it was great and she was happy. Bless you for being such a great daughter and caregiver.

 

[Lorie]

Laura

From my own experience. You know who in your family and friends you can count on. Virtually, none. They are not in the everyday reality of this disease. All caregivers need help and a break. People are like out of sight, out of mind. If only they knew how much just a little would make a difference.

Lorie

 

[Marjorie R. Wilcox]

There are caregivers out there that are not certified, but have experience and are willing to be directed what you want. They have a heart for the work, and a special gift to care and give. You can find them by recommendation of others. Even Hospice workers know of them and work alongside of them. I am one.

Around here they charge 12 to 15 dollars an hour. They follow the doctor's directives, will even go with the client for appointments, and will very carefully carry out your wishes. I have been SO reminded that a certificate is only a piece of paper. It's the actual work and bedside manner that counts more.

I have been asked to work 24-7 at the request of the client themselves and have been privileged to help give quality of life to the end. I won't go into all the procedures I was able to learn. I hope you can find such people.

It is so true that family bows out. Most of them just can't take it. I knew a very loving daughter that just couldn't do even a small amount of what I did. It takes time to bond, but in no time you can be relieved. Make sure to get really good references.

 

[LauraW]

wow! Thank you all so much. Tomorrow I am going to check into some resources. I can't tell you how many times my mother in law offered to help when mom was in the hospital and nursing home, now when I ask she is busy or forgets. I just asked her to pu hand sanitizer...she forgot. I have made a list and narrowed it down to 3 people besides my husband and myself who can be alone with mom and deal with her needs. That just may be enough. I just started crying the other night and when my husband asked what was wrong, I just said, "Can't someone just come and do a load of laundry." It's the simple things. I am going to ask for help with those things too. My mom was the caregiver of her family. She cared for her sister when she was dying of cancer and looked after her son after she was gone. She took care of my cousin when her mother died and on and on and on. It is sad that now when she needs help, people can't do it. I guess some people really just can't but the next time someone asks if they can do anything, I will be ready with an answer...I am making a list! Thank you all so much. Prayers for all of you.
Laura

 

[brendapals]

Laura-
Bless your heart. I'm so glad you found at least a "headstart" to work on this week. I know exactly what you're saying on the help too.

Sure, everyone was very supportive to us when I was first diagnosed, almost a yr now! I got a lot of cards in the mail. Never once has anyone come out here to do laundry, help clean out closets, wash dishes, cook a meal. I'm not complaining, I know how busy everyone is, but dang, it just doesn't make sense.

And I feel bad when my husband and boys have to catch up everything, because I'm just too tired to do it all anymore!

Didn't mean to vent Laura, I truly hope you can work out something with that "army of 3"-I'm sure you will!
Keep us posted,
brenda

 

[Harry77]

Laura;
Have you contacted your local Hospice? The "rules" are very loose with regards to ALS patients. If someone qualifies for Hospice care, Hospice can generally provided some caregiver assistance, sometimes up to 4 hours a day, 5 days a week. This has been a huge help for us, in providing a break in the action to get the routine things we need done.
Another approach we used, that Marjorie mentioned was non-agency aids. We found a very good "live in" person we hired on a weekly basis that was a great help. Down sides are you have to be very careful who you bring into your home, do a thorough background check. And there isn't very much assistance out there in subsidizing the cost. Most will come out of your own pocket and not even be tax deductable.
With regards to family, we've all been there. They mean well, but often get sidetracked with their own daily issues and don't have the experience necessary to really deal with a PAL's needs. I often find myself sticking around, just in case I'm needed, so it's not much of a break. Although I must admit my wife likes being able to socialize with someone else besides me. Sometimes, ANYONE else besides me.
Good luck and hang in there, it will settle into a more manageble routine over time. My favorite saying has become "one day at a time".
Harry

 

[LauraW]

Thanks, Harry. I was told that Hospice will not pay because she is on a vent. I will double check though.

Laura

 

[SMillheiser]

Laura,

I have a consultant who has helped CALS in your situation. We may be able to offer you a grant in order to make use of her services and guidance. I'm sure she can come up with ways to lessen your burdens. Let me know if you would like to look into her services.

Stu

 

[Lorie]

Laura and Others/Medicaid

I happened to find this when I was on my computer one day, looking for extra in home care for Tim. I posted the link for Alabama. They have so many what they call slots to put people in to get this extra care. I have already contacted them about Tim. You have to stay on them. If your state has this, It would be very helpful.

Target Group

Individuals meeting the Nursing Facility Level of Care
Services are provided to, but not limited to individuals with the following diagnoses:
Quadriplegia, Traumatic Brain Injury, Amyotrophic lateral sclerosis, Multiple
Sclerosis, Muscular dystrophy, Spinal muscular atrophy, severe cerebral palsy, Stroke, Other substantial neurological impairments, severely debilitating disease or rare genetic diseases (such as Lesch-Nyhan disease)
Age Requirement


Independent Living Program:

http://www.medicaid.alabama.gov/documents/Program-LTC/3D-1e-3-SAILFactSheet_9-
2008.pdf


Lorie

 

[Al]

Lorie, that link isn't working for me. Can you check it?

AL.

 

[GlenBrittle]

victim of the dreaded wrap-around gremlin .... try this one

http://www.medicaid.alabama.gov/documents/Program-LTC/3D-1e-3-SAILFactSheet_9-2008.pdf