Have any of you who now have or have had Hospice, used the 5 day respite that some of them allow? My Hospice allows this 5 days per month, so far I have not used it but am about ready to think about it. Can you tell me how it went, did your loved one come back harder to deal with than when you sent them? I am so torn about this but yet I need some rest.
Jane, This is just a little off subject, but Happy Anniversary - belated. Our 48th anniversary was May 30th. I mentioned to the caregiver that day, when she arrived and later in the day, a beautiful flower arrangement was delivered, "from my husband"!! I did get out the wedding pictures just to show my DH. He has asked "Are we married"? Nancy
My DH is in a home and have used Hospice for several months. He is a wheel chair and I would not be able to take him to the doctor by myself. They have been wonderful. The nurse comes to the home twice a week (all the patients are on Hospice in our small home), an aid helps with his showers and I meet with the doctor every three months to go over his meds. He visits all the patients about every month or if there is an emergency. It has made a difficult situation much easier. Since he is failing he will be with Hospice from now on as I understand the rules.
Darlene, in what way is your husband failing? That is the problem I am having. With my husband the changes are so gradual that it is hard to detect until all of a sudden I realize things have changed. Such as right now since the beginning of Hospice, he has become so quiet it is not even one word, where when they first started he would try to babble or say something, now absolutely nothing. (do they consider this a decline or not) to me it is, to them maybe not. since the beginning of their visits, He also is having a very big change in the bowel, we are having to control more and more with medication (do they call this a decline/) He is walking much slower than when they first started, It is little things that just start gradual with my husband, that is why I am having a problem knowing if there is a definite decline.
Any one want to take a guess on whether he will re-cert based on this?????
Jane-keep this in mind. Hospice is a business. They want to keep their patients and know well how to qualify them for a recert. I bet they will recert. Want to start a pool (I've never beem one to bet) bluedaze
Thanks, bluedaze. I will just take one day at a time. I guess they will have to look for the signs of decline. The problem is that when they come all they see is a healthy looking man, well groomed and cared for, sitting on the sofa, because he will not get up. They do nothing but check the vital and out the door they go. How in the world will they know how bad he is doing nothing but that.
I am getting the respite in a couple of weeks and mainly because they need to see it all from start of the day to finish. then they will see how really bad he is.
Jane, ask them to try to have him get up. If he won't get up it is probably because he can't get up. If he could 90 days ago, that in itself is a sign of decline. You could also keep a log about things that he has stopped doing or other symptoms that have recently come up. At the end of the 90 days, give them the list and start a new one.
Is he paying attention to the TV set, or is it just noise? Is he losing weight? Is he having problems eating? Swallowing? Does he help with his bathing, etc? Has that changed in any way? Does he need help now that he didn't a few months ago?
Find some of those symptom lists you helped me locate and run down them while you are making your list. It will help you be more aware as you document what is going on.
Thanks Starling, I had already been making a list and giving it to the nurse each two weeks. It is not that he can't get up he just won't while they are here. I tell them he can but he just withdraws when anyone is here. As far as the weight, yes he has lost weight, I have given that to the nurse but they have not tried weighing him, he most likely will not cooperate when they try. No problems swallowing. They also always ask me that.
As far as eating, bathing, etc. He was very bad in those areas as far as needing help when they first came in, I really can't see how that could decline much further aside from just eating less and less.
He has stopped trying to communicate at all, that is one thing that has changed, and the bowel change is also a big change from before. Most of his changes are gradual and unseen until they become big and I suddenly realize it has changed. It starts changing so slowley just like the disease progresssion is so gradual.
Jane, do you have a video camera? You could set it up where he wouldn't know it was running, and show him getting off the sofa and walking so that you could show it to the nurses and they could see for themselves, if you can't prove it any other way. Some might think it invasive, but pictures are worth a thousand words.
It is difficult for those who are not in our shoes to understand that we notice every nuance of change in our spouses, and know that they are declining. Sometimes when we try to tell them, we get the idea that they don't think it is much of a decine. I recently read my notes from a year ago on how my DH was doing and was shocked at how far he has declined in a year! I hadn't stepped back and realized the full extent of his losses.
It is my understanding that weight loss alone is typically considered to be a decline that results in recert.
Calm down, take a deep breath, and try to think about something else. You're going to give yourself ulcers, worrying about something you can't control.
If, for some reason, this particular hospice declines to recertify, you can ask another hospice to consider your case. Even though there are Medicare criteria for both admission and re-certification, each hospice is different in who they will accept as a patient and how they determine recertification for continued service. For example, Medicare does not scrutinize "for profit" hospice as closely as they do the "non-profit", so for-profit tend to be a little more lenient.
Did you folks know that you only have two 90 day periods of Hospice in a life time??? Anything after that is 60 days even if you go off and come back on, if you have used the initial two 90 day periods you will start with 60 days from then on.
Starling, I am not really worried about re-cert, in fact don't much care if we do or not. The only benefit I am getting right now is the incontinence supplies. I am doing most everything. I will be taking the respite. But really a lot of it is just intrusion to my life when they just come in when they want to. So I don't care either way.
NORA - Our Neurologist prescribed "Loxapine" (substituted for Loxitane) 5-10 mg for my husb for 'combative behaviors' and it is taken at bedtime. Since then, he's better, but not totally -- We were taking the 5 & up'd to 10, but then backed it off to 5 again...I am now thinking to go back to the 10. He seems more "out of it" when we take the 10, but without it, I am facing a far worse situation of the combative behavior. "Normally", he still knows me and is agreeable (with the med), but this morning @ 6:30am, he was restless in bed & when I asked if he needed to go to the restroom, he said "yes" -- He was already soiled through his sleep shorts & T-Shirt (he sleeps on a pad - also soaked) -- when we got to the bathroom, he allowed me to take his T-shirt off & then "refused" to let me get his shorts off. I explained over & over why we needed to change him & who I was -- he said "no" and didn't know me at all. Very very combative. Rather than force the issue (have learned the hard way not to do that!) I just let him sit in his chair in the living room (on a fresh pad) and gave him his "morning pills" -- Lexapro (depression), blood pressure & nexium...I changed my clothes thinking if I did he might think I was a different person -- then came in here to "read" to see if someone might have another idea. I was about to call a friend to help me but after about 1/2 hour, went back in there & said "hi handsome" -- he said "hi beautiful" and I knew he was "back". We did get him changed & now he's "sleeping" on the couch. Do plan to add the xtra 5mg in tonite's meds...will just leave it that way indefinitely, unless something else changes. This is so hard to figure out when things keep changing all the time. As I read through these notes about Hospice, I just wonder how long it will be for us. Thank y'all for all the info you are providing...it helps so very much!
We are now in the system with Home Health. Since Hank was in the hospital Medicare covers that. If he ends up on Hospice it won't be for AD, but for whatever else is going on. There are so many issues now it's hard to figure out. The Home Health representative who was here yesterday brought the Hard Choices booklet, which is very valuable. Hank is weak and hard to hear, but he understands enough to say he never wants to go back to a hospital for anything and I think he understands about no antibiotics. We are in that limbo state where it isn't clear what might be reaction to new drugs or his general demise. I am so thankful for the Home Health - even though it makes me more homebound for now at least someone is here to monitor and advise. The only good news for me is that I can't do much cooking for a bland and liquid diet for suspected ulcers. I'm just making jello these days....
Frand, when you say Home Health... I'm having the Visiting Nurses come out after my husband's hospitalization, but as far as having anyone to just BE here, ready to help or to watch TV if not, apparently they don't have anyone to do that, and that's what I need (this moment). The medicare lasts for 60 days, no more, am I right?
briegull - I think we have the same thing - just a different name. Frankly, I haven't looked to see how long this is covered, I'm just grateful for something. I know what you mean about just needing a companion so you can get out. I know you can pay for that ($16.50/hr here) through other services. Yesterday the person here from Home Health stayed to do her paperwork of the day so I could take a few minutes to run to the store, but I'm sure that was a one time only. As far as groceries, there is usually some store that will deliver - though it seems weird to have someone else smelling the cantaloupes, or whatever. The qualifications for getting Home Health here is that the patient is homebound - means I am homebound too! I broke the law today and got him in the car so I could return videos we rented before all of this happened...
Skilled Home Health care can be re certified for another 60 days. The qualifier is that a true skilled service must be needed. Homebound status means the beneficiary can not leave the house without adaptive equipment and much effort. Some things are best not mentioned :-)
I read most all of the threads even though they don't pertain to me, because it seems the future is coming too fast. After I read this thread a friend called. She is into metaphysics like most of my friends. The 4 children have been caring for their mother for a couple of years round the clock. The mother had a massive stroke, and now she is on a feeding tube, can't do anything without assistance, can't walk. She told me today that her mother's primary care physician was going to take her to talk to Congress, because her family had saved Medicare so much & they declined a new wheelchair. I told her about Hospice. She had actually never heard of it. They are paying for all of this out of pocket, and her brother has had a nervous breakdown, and I feared my friend was the next. They had taken a beach vacation and packed the mother up, & due to the unfamiliar surroundings, the mother was very agitated. She has signs of dementia of some sort.
I told her about today's thread, and she is going to put it past her 2 older sisters. They have POA. She is hoping they will agree to an evaluation.
You never know what you learn might help someone. I don't know why the PCP didn't suggest Hospice, but it will be interesting to see if it works out for them. The stress it has caused this family is terrible.
Don't worry, frand, you're not homebound too: this is the qualification: # You must be homebound. This means that you are normally unable to leave home without considerable and taxing effort, and, when you do leave home, you require the assistance of another person or an "assistive" device, such as a walker, cane, or wheelchair. You may leave home at any time for medical care, approved adult day care or religious services. Absences from home for any other reason must be infrequent or for short periods of time, such as family events or outings; and # You must receive your services from a home health agency that is "certified" (or approved) by Medicare.
Look at http://www.aahomecare.org/displaycommon.cfm?an=1&subarticlenbr=86
briegull - thanks for looking all that up and posting it. I can't imagine what I did with the Medicare handbook! It's got to be around here somewhere. Anyway, I figure I will get clarification when Nina returns tomorrow. I am making a big effort to get my husband up and awake for at least an hour at morning and lunch. Taking him in the car to return those videos at least made him have to sit up! Guess that is my contribution to physical therapy! What a life, eh?
Our Hospice (not sure if it is Oregon in general or this county) use the Karnofsky Scale to determine eligibilty. I don't remember that being discussed here, but it is easy to Google. My husband is estimated to be between 40 and 50 on the scale and doesn't qualify here. In Michigan, according to what I saw on line, 70 or less makes one eligible. Oh well, we can get Home Health for three weeks, so that gets us down the road and maybe things will change for the better or worse by then. I can do anything for two weeks - I think!
I think I am going to need to bring my husband home from the ALF. After a year of private pay & a dwindled savings account. My question would I be able to get any help from Hospice. He suffers from FTD, so he has some behavior problems with changing & showering. I have mentioned in the past that I struggle every day whether to bring him home, I think maybe the decision is being made.
There's so much variation, I'd leave a call for the doctor (or contact him) and spell out the situation and see if he'll endorse Hospice, then make the contact yourself.
I think I can pay for another month. So I am praying for direction. I spoke to an Aide that can no longer work at the ALF full time....due to her bad feet. She does really well with my husband, she said, she would love to stay with him when I needed her. Of course, I will pay her. If he doesn't qualify for Hospice, I would still think it would be less a financial burden to hire home care. My husband's behavior is much better, due to a medication change. Yes, he still doesn't like being changed or showered. I have changed him many times recently, I talk to him in a soothing voice & hug him as I am removing his pants & brief...he has really done well.
I just read on my Facebook page...What God Wants Me To Know for the day, as follows: On this day, God wants you to know ... that there are times when a change of direction is for your highest good. It takes courage to change direction. Choose the path your heart agrees with and walk with your head high and your eyes open. Don't be afraid.
that was what you needed to give you peace about whatever you decide. Kadee, you will make the choice that is right for you and your loved one. That decision may be right for now but change later. We never know, but if I have learned one thing about life with Alz, it is that nothing stays the same for long and we have to constantly be ready to make changes that worked just a while ago. No decision is bad if it works for you..... God Bless you and don't second guess yourself. Do what the message says.... peace with whatever you decide......
My husband was on hospice care the first 6 months of 2010 for a 'debility' (not sure of spelling) diagnosis, not dementia. It was because his decline was so steep. They worked wonders in getting his medications adjusted and working with the ALF on how to work with him.
My husband was re-certified for Hospice today. Also, the nurse ordered a n air mattress. My husband has the beginnings of a pressure sore on his heel. I was so glad to hear this news.
We have had Hospice and I finally decided I can take advantage of respite. Will schedule 5 days and 4 nites for him in Ridgeland Hospice Center. Me and dgtr and grandkids going to visit my parents in Mobile al! Can't wait!