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Not life-ending hospice care, but HELPFUL to the CG. It's been a year and a half of taking care of my 98 yr old grandmother with mid-stage dementia by myself and I am FINALLY getting a BREAK!!! I am SOOOOOO excited I can hardly stand it. But when you have to pay for yourself and then for her stay at $100 a day on top of your accommodations, it's really hard to come up with that money...but recently her home health ran out to where Medicare would not pay for anything anyone to come out and bathe her, etc., so they suggested we try and get her on hospice - not end-of-life hospice, but continuity-of-care hospice, and it's been GREAT!! We have a dedicated nurse who comes in 2 times a week, and an aide who comes in 3 times a week and I don't have to pay for anything. They pay for her incontinence stuff, and her meds, and BEST OF ALL, they PAY FOR RESPITE TIME!!! And if something happens and I would take her to the hospital, I call them first and they come out and assess b4 I go to the hospital and get stuck in that ridiculous quagmire for hours, and if I do have to go, they go with me! So I don't know what it was that qualified her for their services - much like home health, they have to assess her and she has to be recertified every so often - but as long as they will certify her, I'm going to let them do their thing because it's a TON of weight off my back, and they help with so much financially, they really are a GOD SEND.


So, I'm just here trying to let folks know that just if your loved one is in a place that is hard to take care of on your own, try considering hospice. The stigma is there, that you have to be dying within 6 months, but that is no longer the case...some patients actually get better on hospice and go back to home health!! So, consider it to be a WIN for yourself as a CG, to your bank account, and just to have someone else there to handle the load with you...

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Oh my God I did not know this! I am going to check into this immediately. I want a vacation!!!!
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Worried, Hubby is bedridden and all the meds he’s on are for “status quo” so to speak and not curative. To be brutally honest, he needs to be in a facility, but we don’t qualify for Medicaid. Whatever is done for him needs to be done at home. I’m most interested in the incontinence supplies as they’re very expensive and we use so many of them. We get shut down at every turn, and quite frankly, I’m getting tired of begging for no reason
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Ahmijoy it sounds like you need in home support services not continuity hospice. There are some state programs that will pay for in home care. your husband would have to be approved for it, and they will determine how many hours he needs and then you’ll have to hire a caregiver or caregivers yourself and then they have to be approved by the IHSS program. (That’s how it works in CA at least). With continuity hospice, they provide palliative (comfort care) not life-prolonging care so I’m not sure that’s what you want? Good luck!
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Thank you, Grandma1954. I’ve done some research on Continuity of Care Hospice, but most of what I’ve read about it refers to end-of-life Hospice even when speaking of continuity of care. Hubby is not, at least I hope not, at this point. He needs more than home health care. He needs to be seen by a Visiting Nurse or a doctor who can keep tabs on his heart (he has congestive heart failure), BP (historically low), and things like podiatric care, etc. it would also be wonderful if we could have incontinence supplies paid for. It is becoming impossible for me to turn him over to bathe him and his skin is not in good shape. That also needs a doctor or nurse’s attention. I cannot get him out of the house due to mobility issues. No money to pay for handicap transport. We need help on many levels. I am going to call a local home health care agency tomorrow to see what they say.
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Ahmijoy, if you are asking about seeing if a person qualifies for Hospice there are conditions. The person must be diagnosed with a life limiting condition, must no longer be seeking treatment for the condition. Typically a diagnosis of 6 months is used but this is not a hard and set rule. There are times when a person is reevaluated to see if they are still appropriate for Hospice. the re-certifications are done about every 90 days. But as long as there is a documented, continued decline more than likely the person will remain on hospice.

Kannie, if you are asking about the aids from Hospice typically the CNA will come in 2 or 3 times a week depending on the circumstances. They will be there about 1 hour, more or less if the need is there. They will bathe, dress the person. They will usually check to see what supplies are needed. They usually will not stay there while you run out to get your hair done or go to the movie. (I did run out once because I needed milk and eggs. But I was back within 20 minutes)
All Hospice that are Medicare approved have Volunteers that can come in and sit with your loved one. Typically the time span is about 3 or 4 hours. They can not feed, give medications or change someone.

The best way to find out if your loved one qualifies is to call a few Hospice agencies and talk to them. Interview then just like you would any doctor, babysitter, employee. There are 2 types of Hospice Not for profit and For profit. The hospice I used was Not for profit.
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This sounds great but quick question. If your parent would need aides more than 3x per week are you allowed to use an agency Supplement aides?

Also, how long to the aides stay that come three times a week?
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I would love to take advantage of this! How do you go about finding out if you qualify? We aren’t connected to a home health care agency. Who do you call?
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I am very happy for you! Yay!
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Lisa9la - thanks for the ideas. I am considering more options now so I get respite.
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Celebrating your vacation in my heart! What great news. Thanks for sharing it with us -- we receive too little good news. And thanks for all the information about hospice from all of you.
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If you are on hospice, they give you four nights five days respite. Hospice will place your loved one in a care facility (SNF) approved by them and in their network that has a bed. This is the respite they provide every three months.if your loved one doesn’t qualify yet for hospice or you need more time than 4 nights every 3 Mts. Take a break by hiring or asking a volunteer to come in and sit with your loved one. If money is an issue and a business who sends out workers and charges 20 an hour is to much for your loved one. Then it’s time to seek out an individual from nursing school or by word-of-mouth to sit with your loved one, ask for a volunteer from your church our friend group post an add on care.com. I hire students from the college for long weekends and I pay 100 a day( 24hrs) it’s not much obviously, but they’re happy to come here they can do their homework and all their required to do is give meds, serve her prepared food, and move her from bed to toilet just occasionally since she has a catheter. I’ve been able to do this for over a year. I have paid people to watch and care for her as well as take care of my puppy dogs. Look for people that would normally not be looking for a full-time job or not want that commitment; students, the retired, a stay at home mom, are a good options.
If you’re unsure if your loved one  is hospice ready talk to your doctor or contact the hospice companies in your area and have her assessed. If she’s not ready for hospice she may be able to get onto pallitive care and they will also come out to your house they just do not provide as many resources. Hospice goal is to help the loved one be cared for without having to go to the hospital for every illness or accident and by keeping loved ones in their home and out of skilled nursing facility.
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What a gift! You and your family deserve it.
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Some people actually graduate from Hospice I was also told when they came to help me last time, with my Mom. Unfortunately, she didn't. How do I find a place anywhere to go for respite? This I didn't know. I am hurting all over now...especially my teeth from grinding constantly and need a few days of total rest. I work elsewhere on weekends so I have no free time at all anymore. I apologize for whining.
Need a break dear God, I pray a lot but it doesn't seem to appear.
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Kirsten, I think a number of VA homes have greatly improved. Like with everything in life...You are going to have those people who do a good job and those who are just there for the paycheck. VA home Was recommended for my Mom because Dad was a vet. I chose not to place her there because it was almost an hour away on back roads. The one Mom was in was 15 min away.
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Ycatsms, so happy for you. Our Homecare and Hospice are one and the same. I worked for a Visiting Nurse facility (secretary) and we suggested Hospice to a number of families whose LO was under our care.

Have a great time!
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People don't take advantage because it used to be for someone who was dying within a 6 month period. The criteria changed a few years back. Hospice came into the NH, where my daughter works, and evaluated every patient. A number were put on Hospice, why? Because whatever they had wrong with them they would eventually die from even if it took five years.
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I have to echo the praise of hospice. When my dad was in the hospital, the social worker suggested this and I was angry and defensive. I said no way. She explained that people often view it as a death warrant, but it not. Best thing we did. While my dad was lesse care living, they provided, for free, better, safer beds, better wheelchair, lifts which the places did not have, and visits by hospice nurse, hospice volunteer, hospice personal care, SW, etc. They also advocate for you when the facility is providing proper care.

Now my dad is in a SNF because he is a vet AND on hospice, for free. I had read the SNFs that take VA contracts are dumps, but this one is beautiful Had he not been on hospice, he would only qualify for VA contract SNF if he was 70% service related disabled which luckily he is not. I have made some mistakes on this caregiving journey, but choosing to do hospice was the best thing I have done. Katie used the word Godsend and its funny she said that as I use that word all the time concerning it.
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I don’t understand.... you mean you two Live together and you won’t need a vacation so these people come in and check on her? Is she alone in the night? Because my birthday is coming up and I wanted to go spend a full day of fall night and part is the next day away. And I’m clueless who to get. Mom does have some money to use, But I always heard for anyone to come in they charge $25 an hour and if they spend the night that adds up to way way too much money. I think I would need someone to spend the night in my room so she’s not alone all night clueless who to get! She’s gonna be 95 and has dementia
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Vacation envy:-) Not that my funds are there to do it, but hopefully we can. Other priorities like new glasses (first in years) and a new mattress (also first in a couple decades)...closest I am getting is a picture of my favorite spot blown up and in front of me, and considering a sound machine to get the waterfall sound. I almost don't want time off for fear the re-entry will be too intense, and come too soon.
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I am sooooo jealous! I am trying to get my 96-1/2 year old DH onto Hospice but they cannot accept him yet. Working at it! Because he has maintained his weight, they can't get Medicare to approve yet. Of course, the flipside is that he is maintaining his weight and that is awesome.

Enjoy the extra services and supplies! My day will come soon, hopefully.
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thank you. sounds wonderful! 8 years here- with Parkinsons and dementia and incontinence. The Dr has finally ordered an assessment. Waiting waiting waiting.
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There are qualifications to sign up for Hospice. Either have the doctors office to call or you can call your local office yourself. They will come out to assess to see if you qualify. My Mom has been on it for about a month because she isn't eating well, has lost lots of weight and in the last stages of Alzheimer's. It is wonderful. The nurse comes in once a week, she works with both her doctor and the doctor with Hospice to adjust meds that seems to be working better, giving suggestions, a hands on approach. The meds are delivered, no charge if you can't get out. The Social Worker from Hospice comes about every 2 weeks to see if I need anything, there is a minister who will come to the house if you wish. Hospice takes over everything, even when my Mom passes, I call Hospice not 911, I know that's a touchy subject but it was nice to know, they have 24 hour service. You can call at anytime if something comes up instead of taking to the ER.
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I LOVE Hospice. My husband was on Hospice for just over 3 years. I feel that not enough people take advantage of this WONDERFUL option. Far to often it truly is EOL (end of life) and the average hospice time is less than a week.
It is far less expensive for Medicare as well. There are not all the hospital and doctor expenses. There are no treatment expenses. There are re-certification times where the person is assessed again to determine if they are Hospice eligible but as long as there is a continued, documented decline they will meet qualifications.

Congratulations on the well deserved vacation.
And congratulations on finding "one of the best (or worse) kept secret" of caring for someone that will not get better despite all the interventions, all the hopes and prayers. All the love and heartache is now shared by a group of people that will help you through this.
Best of luck
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I started that two months ago and it is indeed wonderful! She has someone to talk to during the day twice a week and they bathe her and make her feel good. Take advantage - this is a really good benefit!
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how would I know if my husband would get hospice care? who do I speak to about hospice care?
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Thank you so much for this!! I’m so happy for you and hope you really enjoy your vacation.
I’ve been so depressed lately because I haven’t had home health care for over a year because Mom refuses to do the rehab part of it. I have a dr appt for her on Monday and I need desperately to talk to dr about this. I can’t think you enough for giving me hope!!!
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Hospice was a Godsend for my Mom and she loved all the people that took care of her. Until she was on hospice things were very hard as she lost all mobility and we had to hoyer her into a wheelchair, hire a special driver to get her to doctors etc. I don't know what I would have done without the help of the wonderful hospice people we had.
Please enjoy every minute of your vacation, even the little things will add up. Don't worry about minor things in the hotel etc, you will forget them and only remember the good from your trip. You will feel so much better and recharged when you return.
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This was the first thing I read today and I am so happy for you. I ,too, have been taking care of my dad for several years now and have just signed him onto hospice care last night !
I always thought odd hospice care as the last thing you do before someone passes away but as you said,this is not the case.
He is very low on funds and we cannot afford to private pay for anymore extra help so financially this is a win win 😊
He is 93 with dimentia,CHF,bad circulation in his feet which have open sores that are being treated. He was just in the hospital for pneumonia and rehab for a few weeks as he recovered. He lives in assisted living with minimal extra help.
But now with hospice care,he will have a home health aide 5 times a week to help with dressing,showering,shaving etc ..and a nurse who will continue the work that a visiting nurse was doing with his feet. She’ll also monitor his vital signs daily.
There’s a chaplain and a military volunteer that will come and just talk and visit him.
I was skeptical at first but the lady’s met with was so compassionate and really understood end of life.
I understand that he has to be re-certified every three months but that’s ok.
I can live with that. And if he improves ,then he’ll come off hospice care.
And if he declines ,then they are there to manage him and keep him comfortable.
He worked hard all his life and paid his dues into the system and I am happy that Medicare is there to cover the cost.
Finally, there is someone whom I can call if I need to.
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Thanks for sharing the information. It's good to know there's help. However, I'm still not clear on a few things. Who suggested hospice? Who approved and paid for the costs? Medicare?

So glad you're getting a break. Enjoy every minute of it.
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Dear ycatsms,

Thank you for sharing this information. I'm happy to hear you are going to enjoy a well deserved vacation and get some respite. It is so hard being a full time caregiver that often we forget about ourselves. Take care and enjoy yourself.
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