Can’t make a decision

Sunrise24

It has been a while since I have posted.  Since then, I had taken my dh home from memory care and he was doing fine for three months.  He then started getting anxious and hearing voices.  He told me and therapist that the voices were telling him to hurt himself and that the bad guys were coming to get him. Therapist added more meds.  This continued for several weeks and he was being tormented by the voices to the point where he was weeping in distress.  One morning he said that he was hearing them and they told him to hurt me. I asked if he wanted me to call crisis at behavioral health and he told me yes, that he was afraid of what might happen.  I called them and asked to go in person and they assessed him and recommended an inpatient placement.  He spent 3 days in ER because no psych beds during which time he started having visual hallucinations.  He was placed in Geri-psych unit for about three weeks but voices were still there though not quite as intense.  They were supportive of any decision I made to either bring him home or place him back in memory care which I did.  He was still hearing voices and they hooked us up with an incredible NP who specializes in dementia.  She thought what psychiatrists were giving him for meds was all wrong and changed everything.  She has been my angel and for a month now , voices gone, anxiety gone and his personality is coming back.  The staff love him and he is content.  He is still pretty high functioning.  I have taken him to a movie and dinner with extended family members which he enjoys.  I see him every day but today he asked how long he was going to be there and I told him I wasn’t sure, that the doctors still wanted to see how he was doing on meds.  He said he just wants to be with me.  I would like to bring him home but there is no way to know how long he will be stable and will I have to go through a third episode with placement again?  There is also the prohibitive cost… a shared room still $8000. A month.  I can only do this financially for about two years then I have to spend all of our life savings for Medicaid and  move him to a less desirable place or I can apply to the Soldier’s Home for Veterans  nearby which I think is a better option.  Still have to pay but only a tiny fraction of what I pay now.  I am just on the fence because if I take him home, I can manage him but will just have no time to myself unless he would agree to daycare which I don’t think he would…. Thoughts??

Ed1937

Sunrise, I'm sorry you are dealing with this, but glad things have improved. One thing I would recommend if you haven't already done it is to see a CELA as soon as possible.

jfkoc

Meet with a CELA yesterday. They will help you through the finding/Medicaid issues.

You post makes it very clear that at least 50% of the medical students graduated in the bottom half. It is imperitive that we find the right medical care...it is not easy!

Horray for the NP. My granddaughter is in school to be a NP. I am going to tell her to look into specializing in dementia.

BTW and FYI there are neuropsychiatrists out there. Your Neuro will often defer to them for meds.

Sunrise24

Hi Ed…. Thanks for the feedback… we have an Elder law attorney right now … hopefully we have all our ducks in a row…. I am hoping not to be forced to get medicaid.  Soldier’s Home would avert that….. Appreciate your response!

Sunrise24

Hi jfkoc:  Appreciate the feedback… No kidding!  In my area of Western Mass we have limited resources and very few neuro-psychs…. We were seeing one in Boston but they wanted us to get treatment closer to home…. It really is mind-boggling how the NP nailed it!!! Thanks for your thoughts… …. Still on the fence of whether or not to bring him back home….

toolbeltexpert

Sunrise I can't add anything. But western Ma, was my old hunting and fishing ground. Quabbin . I had family in Ware, I grow up in the famous sauce town. Which is impossible for a southern to pronounce. I am sorry your having to deal with all this, but your experience will win the day. This is so hard.

Sunrise24

Hi toolbelt expert…. Ware is a bit remote!  Quabbin is a beautiful area…I live further west….thanks for your response!

jmlarue

If you can get a bed in the VA home, it's the best option for you. Does your DH have a service-connected disability? If so, there's a benefit called "Aid and Attendance" that provides money money each month to hire help. You can get more info on the VA website.

Sunrise24

Thanks jmlarue! Sorry took so long to reply.. haven’t been on the site… I will probably apply to Soldier’s Home… Thanks for the info… He does not have a service related injury…. Can’t get Aid and Attendance but the cost there is a fraction of what the Memory center charges… I may still bring him home for a while if I can continue services with the person managing his meds…. I have taken him to family functions and to dinners, movies and he is doing quite well and getting enjoyment..

Sunrise24

So here we are at the end of October and my DH has been doing well at mc since June.  He is very happy there but enjoys going out with me as well.  The NP has managed to get rid of all voices and he has no memory of them.  I have taken him to dinners, family functions and all behaviors are entirely appropriate.  He helps staff at mc moving chairs or carrying things.  He has exhibited no anger or any of the past behaviors.  I really feel right now as though I am paying an exhorbitant amount of money to basically let him hang out and sleep there.  I visit every day and try to take him out at least for an hour or so.  I brought him home Saturday and he helped me with blowing leaves off deck and we watched a movie.  Still struggling with wanting to bring him home for good…. Any thoughts? NP said she would continue to monitor his meds if I chose to take him home which is also comforting.