Has anyone else had to deal with this? My husband has no sense of direction, don't know what is left or right or what is front or back.He wants to lay in bed cross ways or opposite up and down.He don't recognize familiar objects,like the toilet,even after me showing it to him.This really worries me. Nelliejane
I think it's just a normal stage of progression. I was going to say yes to your first question before I realized you were talking about something a good deal more advanced than not being able to find your way home from a familiar landmark, which is where my husband is.
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Yes, what you describe is definitely part of Alzheimer's Disease. How long has your husband had the disease? As Emily said, it sounds as if he is entering a more advanced stage.
my husband was diagnosed in 2004 but showed small signs 2 or 3 years before that. He has taken aricept and namenda since then,but the nuroglist uped the aricept to 20 mg.per day in 2005. He has gradually declined but for the past three months he has declined faster.I'm so glad I have found you guys.Sometimes I feel like I'm the only one in the world nelliejane
My DH does not know right and left anymore (I just point and say turn). He has not forgotten the toilet, but sometimes asks how to flush it. He is now getting lost INSIDE our house. We have a four bedroom ranch and have lived in the same house for 31 years. Sometimes he will look at something (like a table) and it is as though he has never seen it before. He'll say that it is beautiful, like he is enjoying the beauty of it for the first time. It is really weird. I don't try to explain anything to him, like we have had the same table for years.....I just make positive comments about whatevere it is he is saying and basically just agree with him. He also has trouble getting positioned in bed. We have a routine when it comes to bedtime....we sleep in different bedrooms. But I always tuck him in and we go through the routine...he gets his knees up on the bed, kind of craws until he in midway in the bed, then falls down on his left side. I have to position his feet because his legs are very rigid and then I position his head on the pillow. It sounds complicated, but its pretty easy. He sometimes rolls over on his back through the night. He now has a bed rail and a body pillow because he has fallen out of bed twice. Once he hit his lip on the side of a table and had to have stiches. I have rearranged furniture and rugs to accomodate his walking on a walker and I ALWAYS keep lights on throughout the house through the night. I am a sound sleeper, and really need my rest (as we all do), but I have a motion detector outside his bedroom that rings a bell in my bedroom if he leaves his bedroom through the night. He has a bedside comode, but he has just recently started using it instead of going to the bathroom down the hall. He sometimes gets out of bed, uses the comode, then gets back in bed without any assistance. However, when he gets back in bed by himself, I have found him the next morning sideways in the bed. My DH is 6' tall and weighs 275 lbs. I'm just grateful at this point that we don't have to use diapers.
I think what you are describing is a part of the progression of AD, but sometimes when things begin to change, we wonder where we are headed with it.
Thanks Jayne Your routine sounds just like mine,except my husband does wear a diaper at night.The Dr.has ordered home health and a therapist is working with him but so far no progress.The Dr.said after home health maybe hospice, I don't know anything about hospice.
nelliejane, The sense of direction is a typical sign of the disease. It sounds as though my husband Jim is about where Jayne is stating that they are in the progression of the disease although we do have to use the diapers. Nelliejane, my husband cannot find his way in our home that we have lived in for almost 30 years. I have to lead him to the bathroom even to get him changed. I do still have him sit on the toilet every 4 hours just to make sure he is dry or does not need to go, sometimes he does and sometimes not. Nelliejane, I am very interested in what your Doctor says about the Home Health care, I do know we could not qualify for that type help unless the patient also needed a type of skilled care, what type of skill care is your Doctor offering, also the Hospice, what criteria is he calling that the hospice can be called in? I think my Jim is near where we could use that type care. Please keep us posted on this and anything we can help you with.
Jane The day we were at the Dr. I was just about at my wits end and the Dr. said I'm calling in Home Health to get you a little help. There is a physical therapist that comes 3 times a week and works on his walking, and a LPN comes once a week and checks him out.The Dr. made the statement that after home health I may go ahead and call in hospice for I can use it longer because of his disease and they will help you as much as him. I gathered that home health wouldn't last long. This is the 3rd week. I'll let you know.
Nelliejane, I will be very interested in this. I think our Doctor was maybe suggesting Home Health to me about 3 months ago when we were there, he did ask if I needed them and I told him no. I guess I said no because I did not know of a skilled care need that the Doctor would prescribe and thought it would have to come out of pocket. Our Doctor is very good but yet at times he does not go above and beyond unless he is asked to. I do also know that Hospice because of the diagnosis of Alzheimer can be called in much earlier than with other illnesses. I called Hospice about two weeks ago and asked about the rules, the Director called me back after I had received some incorrect information from the front office and I was told at that time that with Alzheimer they actually encourage early use, in order for the patient to get use to the Hospice people and them to us. I have hesitated because I do know that with Hospice you have to be re-certified as needed each 90 days and you have to show a definate decline in order to keep them. I guess I was afraid to call them in to soon. Nelliejane, I also do know that you can use Hospice for several years if you qualify and need them, not just six months. So if your Doctor gives you this option please take advantage of it.
Please do keep me posted. I feel we are near that and I also want to take advantage of all the help I can get. This will allow me to keep Jim home and not have to place him.
I will keep you updated about the wheel chair. If you have Hospice they will automatically bring in the equipment you need. So that will also be such a help to you.
As far as the home health. If you have Medicare it will pay for 365 days per year. The physical therapy is a different story. I think you only qualify for so many visits in a benefit period. It is figured differently than other types of Home health care. Nelliejane, remember also that when you have Home health you are also allowed someone to take care of the bath time if you need to. .
One symptom that can sometimes develop with AD is "visual agnosia", an inability to understand what objects are, or where they are located. They see the object, they simply cannot tell what it is. And they may think it's closer or farther away than it actually is. My DH is not nearly as far along as yours, but I have seen indications that agnosia is affecting his ability to function. I just didn't realize what was going on. He'd be looking for, say, his keys. And they'd be right there in front of him. This problem comes and goes for him.
Anyway, that might explain part of what is going on with your husband.
nelliejane, my husband began Hospice two weeks ago. We have decided for home Hospice care for now. The caseworker/nurse comes out once a week just to check on him. They sent us a comfort package of meds that might be needed in an emergency and have prescribed his pain meds through the Hospice program. They have also supplied a transport chair. As my husband's health declines, Hospice will send in aides three times a week who change linens and bathe him. Volunteers will come and stay with him if I need to go to the grocery or even church, a concert or movie. If I would like to take a trip or just to sleep for up to a week, he can go to Hospice House for $40/week (out of pocket). My husband is over 65 so Medicare is picking up the tab though I understand private insurance picks up the tab if you are under 65. But the doctor must contact Hospice for you and it must be his/her opinion that your husband has around 6 months or less to live. I think they can renew the contract under certain circumstances. Also I understand that all treatment, therapy and medicines (except for pain, constipation, comfort, etc.) are stopped. It is such a blessing that there are Hospice programs now. It's a relief that I know when I get really tired or need to get away, Hospice is there for me and my husband.
Thanks everyone,from what all of you all have told me, I don't feel like I am drowning any more.Our Dr. told me that hospice would help me more than my husband.We have a wonderful Dr.and he is always ready to help.I'm his patient too and he sees all sides. Again thanks and GOD BLESS all of you.
Bebe, You are saying that you have had Hospice for two weeks now. If I am remembering correctly your husband also has cancer. Is it because of the cancer that your Doctor called hospice? They can and do renew the contract BeBe, as long as your husband shows a decline from the first certification, then after the second certification he has to show a decline from that time, on and on it can go. You can be recertified every 90 days forever if the decline is shown. You mention that your Doctor has to think the patient has only 6 months but this is not the case if the reason Hospice is called in for an Alzheimer patient, with Alzheimer it is not easy for a doctor to make that call so Hospice has different guidelines for Alzheimer. I just talked with the Director of Hospice two weeks ago and also researched this on the National Hospice web site. Maybe this is why Nelliejane has the opportunity to get Hospice with the Alzheimer diagnosis only.
I am as I say very interested in this because I am almost ready myself to ask for Hospice. Please NellieJane let me know. We also have a very careing doctor and I am also his patient. I almost think he was ready to offer it last week when we were in but I skipped the subject because I just was not sure.
Nelliejane, my husband had the greatest sense of direction and then he started getting "confused" about where we were going. At the beginning, I just rationalize that we have moved to a new bigger city and it was normal. Then I realize that it was more than just a new town. It has been quite a ride since then, specially that he refuses to return to the neurologist to get a "final answer". Hang in there, we are here for you.
Thanks vanessaJVD and Jane I'll be sure and let you know how my sitution unfolds, right now its home health and I don't know how long that is going to go on.If all goes well we are scheduled to see the Dr. April 4.For the past 2 days my husband has been moving everything in the house,probably a new problem,some days its almost like a circus,but I'm doing better you guys have helped me a lot. GOD BLESS YOU
Hi, i would also like to know how the guidelines for hospice differ with regards to alzheimers diagnosis. if its plausible to call them in earlier than a 6mo lifeline then what is the criteria? thanks for any input. Divvi
Divvi: I called hospice when I put Ralph in a care home to help adjust his meds. They have been a big help and are still working on the right mix of meds. A nurse sees him twice a week and a caregiver bathes him twice a week. The 6 month lifeline should not aply if you need help. Call your local hospice and set up an interview. Darlene
divvi, Here are the National Guidelines for Hospice care in the case of Alzheimer. However when I called Hospice I was told that even if all these guidelines are not met, if your Doctor authorizes the Hospice care you still qualify and also they do not require the rules to be hard fast. They also told me that the need to be told where to walk and having to lead the person around is considered needing assistance walking.The Hospice director said that with Alzheimer they encourage earlier use of Hospice than with other diseases. Each case is different but this is the National guideline.
Eligible for hospice care? Hospice care focuses completely on pain management and comfort care. It typically is reserved for people who have less than six months to live. However, very few people with Alzheimer's receive hospice care, partly because it can be so difficult to predict how long a person with end-stage Alzheimer's will live.
The National Hospice and Palliative Care Organization has published guidelines to help doctors determine when hospice is appropriate for people with Alzheimer's disease.
In general, the guidelines require a severity of dementia in which the person has lost the ability to communicate in any meaningful way and can no longer walk without assistance. In addition, the guidelines require at least one dementia-related medical complication, such as: Aspiration pneumonia Upper urinary tract infection Sepsis or other overwhelming infections Worsening bedsores Weight loss greater than 10 percent over the past six months Hospice care is usually covered by Medicare, Medicaid and private insurance. It can be provided wherever your loved one resides, including at a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Conversely, you can choose to stop hospice care at any time.
(Not all Hospice require the additional complications, ours does not.)
Jane, you are right that my husband also has cancer. It was the cancer diagnosis that qualified him for Hospice. I doubt he would qualify based on his Alzheimer's even though he has had it 10-12 years. He keeps himself very neat and clean. Though he tires easily, he can walk without assistance. He has trouble verbalizing but some days are better than others. For all practical purposes he has had only palliative care for almost two years so Hospice is actually more for my benefit. Jane, good information above. Thanks.
thank you ladies for the input into hospice criteria for alz. i will file this and use it as soon as one or more of these are met. thanks bunches! i dont think hes there yet but not off. Divvi