How can I find housing for my husband, who has Alzheimer's and is very agitated?
How am I supposed to cope with my spouse who is in advanced Alzheimer's state? He was in a Alzheimer's facility but became so agitated and fought others they sent him to a senior horizon behavioral facility. It does not look like they are able to control his behavior either. The doctor spoke of hospice center, but I do not know if there is one close enough for me to at least see him, even if he does not know me. I have done all I could to provide him with care for the balance of his life, but with Alzheimer's there is no time assessment. I am at my wits end. I have a elder care attorney group but they can only do what the doctors order. This is the most devastating disease there is. With cancer or other physical problems there is a prognosis for the future, with Alzheimer's there is none.
Expert Answer
Alzheimer’s Disease (AD) just might be the most devastating disease there is, particularly for the family who bare witness to the often slow, but steady and irreversible decline and most especially if the person suffering acts out physically.
First, a follow-up conversation with your husband’s doctor would be extremely helpful. Even if the doctor feels that hospice services may be appropriate now, your husband may not be ready for an actual hospice facility. It’s been my experience that most hospice facilities only accept people who are believed to be close to death (a few days to a few weeks away). Even still, it’s rare to find one that would accept someone with physically aggressive behavior because they are just not equipped to handle this.
Hospice services can also occur at home and this may be what the doctor wanted to explore with you. You should know that “home hospice” as it’s commonly referred, provides for a nurse and often a social worker to make regular visits. But home attendant care - which is typically what’s needed most - is often capped at a maximum of four hours per day. As a result, home hospice is often not the best choice unless the primary family caregiver will have reliable help from family or friends or is able to hire additional home care privately. Without this added support, caring for someone with AD at home, particularly when the disease is advanced, can be physically and emotionally draining and even harmful.
Unless or until your husband’s agitation can be brought under control it seems to me that the most appropriate place for him is the behavioral facility where he is now. The providers there should be capable of finding an appropriate medication or combination of medications to ease the agitation – this is their job. As such, their goal should be to do so as quickly as possible so that he can return to the Alzheimer’s facility where he may be able to receive home hospice services (the facility could be considered his “home”).
Lastly, I want to address what you shared about feeling at your “wits end”. Caregiving does this to us, especially when we go without adequate emotional support. If the Elder Law Attorney group helps you, keep with it. But know that the Alzheimer’s Association has a number of support groups available as well. Best of all, they have a 24 hour hotline that is answered by former caregivers of those with AD. Talking to someone who has been where you are now may just be the best thing you can do for yourself. Alzheimer’s Association Hotline: 1.800.272.3900.