This has all happened so fast. Less than a week. Foster was accepted in the "In Home Hospice Program" this week. They felt that during the evaluation, he could be borderline, but since his PCP physician had written the orders for it, they accepted him. Primarily, because he cannot tend to most of his ADL. He is not bedbound, and is mostly continent. That didn't matter. The length of time since his initial diagnosis, his total inability to answer their questions, stumbled when he got up to go to the bathroom and other observations led to their decisions. They were here today to bathe and groom him (thank you thank you thank you...) and later I received a delivery of all sorts of meds (OMG)..including morphine, fenagrin, suppositories for fever and constipation, and Lorzapam. The RN will be here tomorrow and will go over more details of the program. THey offered potty chairs, shower chairs, wheelchairs, walkers,diapers, medications, etc. -all paid 100% by Medicare... but we had purchased most of these - (only the shower chair and potty chair were provided by Medicare after his hip replacement surgery.)
I don't know what else is included in the program, but today's grooming by Miss Georgina was so appreciated, if only by ME!
FYI, the Hospice regs for Alzheimer's patients are different, apparently, from cancer -stroke - heart patients.
Frankly, I didn't think he would qualify. But what do we know??..when he is the only one we know with the disease. Just thought of many of the other members who are walking this walk with no help whatsoever, and who might benefit from making a call. The six month rule is not cut and dried. They simply re-evaluate every six months, she said. They pay for meds/supplies/equipment...everything! If you think you are in our place, make the call and ask.
Nancy, I know what you mean by you didn't think he would qualify. How long has he been diagnosed? My DH has only been diagnosed for 7 months of course we have no idea how long they had this disease before the diagnosis so that would be an unknown. I suspected over 2 years ago, that's when it became obvious to me. So how much time even before that (who knows) I am thinking already of having him assessed for home health care. WOW! I can totally see how you feel it is surreal! I am glad that you are getting help too! I am with fooly on that one, anything that can help the care giver is good.
Nancy, I am so glad you were approved for Hospice.
B. was too...and now I feel like I have added more people to my team. The nurse and the dr., go right to the group home to see him. And the social worker is working with the caregiver and I to figure out how to reduce his anxiety.
We had an eval. last week too and mine was NOT accepted into the hospice program, although they will give some help. I think it's very dependent on who evaluates and where you live. He's supposed to get physical therapy and I'm a bit concerned about that - I don't want him to hurt more - but we'll see. He talked at some length with the nurse who came out to do the eval - this is VIsiting Nurses, not the specific Hospice care people, which may be the difference. I know that they're chronically short staffed. They could and would send someone to do his bathing but since we have the CNA, Andrew coming, as long as THAT works out we might as well keep him even though it costs and the other would be free (among other things they are like appliance repairmen; they'll be out "tomorrow" but you wait all day for them.
Hospice is wonderful. I don't think I could have survived Claude's last few months without them. I didn't realize how stressed out I was until we had their help.
After he started falling frequently, his PCP enrolled him in Home Health care. An RN came once a week and he had PT and OT therapists come for several weeks. He would not have an Aide come to help him shower as he didn't want a strange woman see him "nekked" :=) At that point, I was still able to help him shave and shower.
He started declining last November and Barbara, the RN, recommended hospice. He was approved immediately. The social worker said the six month rule had been eased and the person only had to have a terminal disease. Alzheimers qualifies as terminal. We didn't need any equipment as we had either borrowed or Medicare had provided it previously. They did provide a hospital bed toward the end.
The RN was wonderful and Malinda, his CNA, was wonderful. In the beginning she came three times a week to shower/shave him. Toward the end, she came daily. She would say "Mr. B, it's time for your shower" and he would say okay and head to the bathroom. The chaplain and a volunteer came weekly and I was able to get out for a couple of hours.
I don't know if we got an especially good hospice, but they were wonderful. My friend's father passed away last week from alzheimers and the hospice they had for him was worthless. They did nothing for him, and they were fixing to fire them and find another one.
If your doctor orders Hospice, most towns usually have several and you should probably interview each of them to find one that fits you, rather than just take the one your doctor orders. That is what Carol did and unfortunately, it was a bummer.
In reading this comment over, I said "wonderful" several times!!!!! This is how I view our hospice experience. As soon as I finish my chiropractic sessions, I am going to start volunteering with them.
Nancy, don't forget the up to five days respite they will pay for. And I believe that is up to five day duration any time you feel you need it. Don't think you can link them end to end to get a month's worth! But yes, we have a good one, and all the meds and supplies and equipment are Medicare paid, so that really helps the budget out a bunch. Did you put your comfort pkg. in the 'fridge? Things in there need to be kept cold. Glad your hubby qualified for that help. Dangerous stuff for kids to find, so be careful with that in the 'fridge.
Nancy - So glad you are getting help and thanks for ALL your input about Hospice. All the rest of you too!! Noticed you are in Houston, and Mary/Texas Joe, know that y'all are closer to me here in Arlington. Do you mind sharing the "name" of the hospice organization each of you is using? Mary, which one were you very pleased with, and which one was your friend not so pleased with. Some I know are "for profit" but there's one here in Fort Worth I've heard about/used for in-laws called Community Hospice (not for profit), I believe. Divvi, like you, I'm not quite ready to make the call, but I have discussed it with my husb's neuro. Plan to discuss with his PCP as well in Nov when we go for next general appt. Here in Texas, the Dr. must order an evaluation and that's what allows them to come out & then decide...When I talked with the neuro about it (end of July) I totally thought I was ready to get info, talk about it...BIG ALLIGATOR tears when the Dr. began giving me the info...Didn't think I could cry any more on these anti-depressants...I did, and still do thinking about it. That said, it is good to know that once we need to make the call, we will get the help we probably already need...Thanks again ALL for your input & info!
OMG, I cannot believe all of your postitive support. Told Weejun last night how guilty I was feeling about taking this step. I felt like it was like giving up.
I will tell you the first Hospice person came out and in ten minutes said he didn't qualify. She was gone in a flash. The second Hospice nurse stayed longer, was calm and quiet and watched him. Asked questions. Watched him. The difference in the evaluations were night and day. She said he did qualify. So if you get one NO, call someone else.
FYI, NatsMom, I signed with Lighthouse Hospice. They have a facility in Arlington. I cannot say enough about their sensitivity and kindnesses so far.
And, YES, JOE, I put the stuff in the top door shelf of the refrigerator next to the butter sticks. I don't think any of the g'children will mess with rectal suppositories. The other bottles of the hard stuff is up in the cabinet inside a cranberry red wine glass, out of sight. Remember this everyone, in case I forget and have to ask you where it is. (I had a concussion...see other topic! (grin).........) Is this really happening????????
Deb, Foster was diagnosed with AD in 2004-2005, but before that the doctors believed he had Parkinson's with dementia (2001-2004)...and treated him for that instead. He's probably had AD since the mid 90's as the doctors say many have mild AD 5-8 years before the official diagonis is actually made.
Nancy, so happy you are finally getting the help you need. Now try to relax and rest. I'll make a note about the cranberry wine glass, and try not to lose it ;o)
Nancy, calling in Hospice is in no way giving up. What it will do, if it works as it should, is to enhance Foster's quality of life, as well as yours. Their personnel can be such a help to you. Good for you for pursuing a second evaluation.
Nancy, so glad you signed in for Hospice. I am going to have Paul checked later. After he gets home from Rehab they will send inhome care for a while and that will work good.
Nancy, the longer you have it, the more you will appreciate Hospice. I've had them since July, and other than the mustache incident, everything has been wonderful. My husband recovered from being in the Hospice Hospital for three days, so next week he'll be there for five days while I'm at my conference. Even if he sleeps for several days afterwards, I know he'll be okay.
Nancy take advantage of the respite care. You need it.
I hope you are right. The change of routine has even upended ME! People coming in and out, keeping him up for their visits, not being able to go to the store/bank/etc. on the day the housekeeper comes because of their visits, having to 'dress up', anticipating their visits, answering their questions again and again,.. (don't they share info??) I am sure it will be good - but it's different. We truly live an isolated life. No one understands how isolated. (All the while worrying about Krissy..who is on my mind every minute)
I agree re the "don't they share info?" They do; it's in the computer, they just don't READ it. ALl the ones who came heere said was, "I don't know how you do it. You're doing fine. I'm going to close this case because there isn't anything WE can do." If I got them to come out instead of Andrew, they'd bathe L., period. Period. And they can't guarantee when they come, it can be any time of day. One showed up yesterday at dinner time.
Our people come at a designated time. That is a good thing. Only problem so far was the man who called re: fact he was about to leave lab and deliver meds at 10:30 PM. I said, Not tonight! Tomorrow!. What was so ironic was that when he called, we were in bed, Foster was sound asleep and I was getting sleepy. The meds were sleeping pills. After the call, we both were wide awake and the dog was too.
A friend's AD spouse was incontinent and almost bed bound. Hospice came out and told her she was doing such a good job that she could teach them. Folks on the AA Forum have the same thing happening. Though the funding and rules are the same each office seems to operate on their own. Two hospices merged where I live so if you don't like what you have you have no choice but to have them quit.
Nancy--No experience with hospice here yet, but we have our 3rd in-home aide since April. It has been a big adjustment, as you said above, always having someone in and out. However, I keep telling myself that it is worth it for the respite, housekeeping, etc. and I've been able to adjust. Let's face it, whatever we do to get help--in-home care, hospice, assisted living, daycare--all of it takes getting used to. As if the disease isn't challenging enough, it seems this journey requires constant change and adaptation on our parts--something most of us have to struggle with.
Hi Nancy: glad to hear your getting help from Home Hospice Program...this is all something new to my ears....never quite connected Alz. with Hospice....but now I have learned something new....We did have Hospice for my Son, in the very late stages of A.L.S. I am praying for Krissy..I know the agony you are going through....Maybe you can take a few days of Respite, and visit with her....Hugs. Rosalie
Rosalie, that is the FIRST thing I will do. As you can tell by reading her journal, the road is getting rough. She's just so weak, and has lost over 30 pounds in six weeks. She's getting so weak, and you guys have to know that she is ALSO reading the journal.. when she reads her guestbook notes.so her Aunt Robin isn't telling it ALL In short, she really needs a new heart before her body gets to the point that she wouldn't be a qualified recipient. Just as the heart must be in A1 condition, the recipient must also be A1. If she has infections anywhere on or in her body, the infection will go directly to the transplanted heart and reject it.
So much all at once. We'll get through all of this though. Our family is made up of good strong women ...and we can handle whatever is thrown at us.
Nancy so sorry Krissy isnt doing well. dealing with a beloved grandaughters health on top of an AD spouse is alot on your shoulders. i hope you can take some respite time and get to see her soon. you do need a break. divvi