I am starting to look down the road for when dh might need placing, if that comes. I want to keep him at home, due to the high costs associated with placement. I thought that, even though suggestions are sprinkled all over this website, if we could start a concise list in this one place where caregivers can look for ways to handle at-home care and avoid the high costs of placement, that would be helpful. I will start with some suggestions that I've picked up. Please add concise suggestions, also.
Here goes:
Volunteers at your church, to come help Daycare Hospice Call local Area on Ageing for suggestions (I don't have that name right) Hire a man or woman to come in to help take care of him Hire housework and yardwork done Get a sort-of butler on board, ie, someone you can go to when something goes wrong around the house, and he can contact his resources to fix it Watch for handicap equipment that is for sale in newspapers, Craigslist, etc. Pick up those items as they become available, anticipating you may need them later Meals on Wheels Cheap meals through meal programs at city senior citizen centers
As you can see, I'm after cheap ways to deal with things. As someone said here, you can hire a lot of help in lieu of spending $8,000 a month to place our dh/dw.
IMO= if you want to keep them home the whole time- its imperative to have medications updated and tweaked at ANY changes for the worse. if you try to address it once new behavioural symtoms show sometimes it is too late and many public daycares, agencies, caregivers WONT work with you until they are under control - that can take along time if they have to be be evaluated in hospital. its better in my opinion to try to maintain controlled-compliant ways during the whole changes in stages. you may need more meds early on and less or none later on as they move into declines. its the only way i was able to keep mine at home all this time. and he was not always easy to deal with and was a runner, aggressive etc but we managed the medications so i could hire help and keep him at home. divvi
I dh is very functional and probably at total stage 5 and soon to be stage 6. A couple of weeks ago he went to the VA and had a physical and the doctor there said he qualified for hospice. I think maybe it was because he also has a heart condition as well as lung problems. Today they showed up...2 nurses one male and one female. They were very noice and asked lots of questions and checked all vital signs, etc. They indicated they would be coming back probably a couple of times a week. I just don't understand this...I am glad they will be doing this and they gave me a telephone number to call instead of 911. They also said the doctor would be coming to the house to check on my husband. Has anyone had this experience?? I am posting this here because maybe some others could get this free care also. I am at a loss wondering why we are getting it at this stage of the game.
Do you think the doctor knows something and didn't tell me??? I asked several questions regarding this and they didn't answer me directly. They said another nurse would have more information for me and would talk to us about medications.
JudithKB-- From my experience with Hospice for my DH and the fact they had to disenroll him when requirements to qualify were tightened, I think it's a sure bet your DH qualifies because of the heart/lung conditions even more than the dementia. You're getting this help because you Dr. made the referral. I know that during the enrollment process alot of information has to be covered. You sound a bit buffaloed by what's happened thus far. May I suggest that you write down your questions and ask them the next time they come. They are coming into your home to help you take care of your DH and they will be giving you instructions on how to work with their system to make that help be as beneficial as possible. However, you are his advocate and still are in ultimate charge of his care. The number the gave you is very valuable to you. If you have any problems with your DH's condition; a question about meds; any kind of medical crisis--call that number day or night. Once your DH is enrolled Hospice is your source for care. They will provide care or direct you what to do. Following their directions will mean anything they provide will cost you nothing out of pocket.
Thanks carosi for the information. I am thrilled that they are here. As usual, my dh was also thrilled just after they left, then later last night he said he didn't like them and didn't want them to come back. I told him we had to have them and he would learn to like them. Whatever they have to offer I want. I do so need someone to come in and give me a little relief from being with him 24/7.
JudithKB, It sounds as if your DH is around the same stage as mine. You are fortunate that he qualifies for hospice (& I don't mean that you are fortunate that he has heart & lung issues). I am happy for you that you will get help & have some relief from the 24/7 job a lot of us have. God bless you!
My wife is on hospice for "general debility" rather than AD. A nurse checks her once a week, more often if needed, but not needed yet. They supply all medicines for the diagnosis for which she is on hospice, which means they do not cover her meds for diabetes and high blood pressure. A hospice volunteer takes care of her once a week while I go to Rotary, and another is coming this Sunday so I can go to a special program at our church. She gets massage every 2 weeks. A social worker checks in about once a month to see if there is anything else we need. AND---the biggest benefit for me so far - I get 5 days respite every evaluation period (60 days) where they take care of her in a local hospital and I can travel to visit friends and family. So far she has liked the people who come in to take care of her, and seemed to "enjoy" her time in the hospital on my last 5 day trip. The down-side is that she is evaluated every 60 days and if she doesn't show signs of deterioration she is taken off hospice until she does deteriorate, at which point she will be put back on. So far she has "passed" 2 evaluations. The next one comes the day I get back from a 5 day trip to Washington, DC.
March...may I ask what was the illness she was diagnosis for? Is she functional and can you leave her alone at all? Can you designate the day or days you want a volunteer?? What type of hospital did they put her in....just a regular hospital? I can't imagine my dh going to a hospital so I can have a few days alone. Sounds like it works out good for you...do you have any suggestions on how I might handle this??? I am just so blind sided by the doctor ordering hospice for my husband and I didn't ask him any questions because it was like someone giving me a death sentence for my dh when that was the last thing I thought someone would say. I am pleased with the nurses they sent out and I certainly need some help to get out without my dh...24/7 care can really get to you. What stage of AD is you wife???
JudithKB, there is another discussion on just this as my husband was recently put on hospice for the same reason as Marsh's wife..general debility. It is a very busy time when they first get started, but will quiet down to a routine soon. So far, it has been a huge help for us...meds, shaving, foot care, general info, social worker etc.... The nurse has already warned my that she doesn't feel he will qualify for another round whenever that is, but take it and use it for now!
JudithKB - my wife was diagnosed with general debility rather than AD at the suggestion of the hospice doctor, since this apparently gives them more freedom to do things than AD She is totally dependent on me for care -dressing, toileting, etc. She can feed herself if I "Prime the pump" by putting the first bite in her mouth. I cannot leave her alone at all. I have an alarm on the door to warn me if she tries to get out when I am in another room (such as bathroom). She is mid-to late stage 6. She was in our local hospital, a small general hospital, for the 5 days I was away. Hospice has arrangements with both of our local hospitals and a couple of nursing homes. They try to use the hospital closest to where the patient lives. I get the volunteers for the days and times I request, as long as they have one available. So far I have had no problem and she seems to like the ones they send. The hospice organization should send you a social worker who can answer all your questions concerning what they can and cannot do, the re-evaluation times, etc. Different hospice organizations seem to have different rules. Mine gives 5 days respite every evaluation period. I think Mary's (Red) gives 5 days every month.
JudithKB, why would you have a problem if he was put in a hospital for five days. You can simply tell him they need to "run tests" or some similar fiblet. He would be well cared for. You would be recharged and rested. Try it one time and see how it works. Mary has had exceptional experience in this area.. Her DH did very well going to the Hospice HOSPITAL ...with the exception of his first visit,....when an aide shaved off the mustache he had worn for almost 40 years. Thankfully, it grew back!
I just contacted Visiting Angels. Sounds good for respite care, but the don't do any nursing like give medication, we shall see. Also found out that if you belong to an HMO you have to deal with them to get lift chairs, beds. Am now waiting fo PT appt. as the dr. could not just give us a prescription for the chair. Also if you find some equipment elsewhere you cannot get them to do the medicare paperwork because you belong to an HMO. I found a great Gen'l contractor by asking a trusted plumber for one. Then thru the GC found a flooring person who told me about a handyman. Just have to keep asking questions.
to Hanging on One bit of information I can offer is this. I had many people tell me I needed to start hiring someone to come in very early in this disease process. I agree I wish I could have but then now as I look back if I had hired someone early on I would be spent out by now and not have the funds when I really needed it with my husband. We will begin our 11th year here at home and to think how much I would have spent if I had started that way back when I should have is overwhelming.
Believe me, I couldn't hire anyone to do anything. Gotta have money for that. Medicaid pays a lot of the nursing home bill but the house that I was so graciously allowed to "keep" is falling down around my ears because I have no money to hire anyone to fix anything.