I am writing this tonight with a very heavy heart and a lot of sadness. I am getting pressure from the health care professionals to have my husband placed in an Assisted Living Facility. My husband, Wayne, began to become aggressive around September 1, 2008. I had to stop taking him out in public because he was trying to hit people, especially guys and he was hard handshaking and squeezing people's hands too hard. We had a group appointment with his neurologist, myself, my daughters and his male caregiver on January 8th. My husband hit the neurologist and yelled at the nurse practitioner and shook her hand too hard. The neurologist placed him on a very low dose of Seroquel which did nothing. The Neurologist referred my husband to mental health to see a psychiatrist to manage medications for his behavior. The caregiver and I took him to the psychiatry appointment on January 22nd. He tried to go after the psychiatrist and started yelling. I pinned him up against the wall and just hugged him. The caregiver and I escorted him into the room and told him to sit down on the chair and I held his hand through the appointment. The psychiatrist bascially let me have it and said that I was in denial about how bad that this has become. I told her I know but he has never hit me and always has been loving. I have to admit he was starting to become aggressive with our 20 year old but she would aways divert and give him a hug ahd he would respond favorably. DH was also becoming aggressive with the caregiver when I was getting ready to leave the house in the morning to go for a bike ride. The psychiatrist said that she had a lot of experience with this and that when they grit their teeth like he was doing that we were already going down a very bad road. She immediately loaded him up with Depakote. It made him sleepy the first day, but no change the next. He was still on that very low dose of Seroquel that was doing no good either. The psychiatrist was pointing out to me that my home is already a care home because we can't leave him alone and we can't take him out in public. I never looked at it that way since we have a long term care policy, I can afford a caregiver and I go off on my bicycle, do my thing and come back. My DH and I still enjoy watching funny shows on TV, laughing and sometimes my DH laughs at things I do. Yes, I am in a big deep denial. On January 27th I was woken up out of my denial again. I had left the house for a bike ride and my husband as usual stole the caregiver's shoes and walked up toward the mailbox to get the mail and the garbage can. The caregiver was frantically looking for some shoes that would fit, but didn't find any. A couple came long in a car down the road because they had seen a for rent sign. They rolled down their window and asked my husband if this was a good neighborhood. My husband hit the guy in the arm. The guy rolled up his window and left and called the police. I was very fortunate because the policeman that showed up at our house was the next door neighbor of my husband's caregiver. The policeman made it very clear to me that the only reason why my DH wasn't being hauled into jail is because he knows his caregiver and thinks highly of him. The guy that my husband hit felt sorry for my husband having this horrible disease at a very young age so he decided not to press any charges. It was at that point that I called our medical provider and told then I need to get the meds regulated very quickly as the police became involved and the police said I needed to do something and he was hinting toward placement. They told me to take my DH to the ER and have him admitted. We did that and they increased his seroquel to 150 mg per day 2 tables 3 times day and left him on 1,500 mg of Depakote. He is now mild mannered and very mellow. I am still getting pressure from some family members and the psychiatrist to place him soon into a facility. My DH still knows who I am and loves his home. I am very torn. I have heard some stories on this board about how Seroquel has helped people keep their DHs or DWs home longer. My husband is also not even close to becoming incontintent. I welcome anyone's opinion on this matter. Do you think I should place him if the medicines are going to work to keep him calm? I am not going to take him out in public and he is now allowed to walk the gravel road alone anymore. I welcome any comments and please be brutually honest.
I am actively looking for assisted living facilities, but I don't feel totally ready to place him. This is such a difficult decision. Medicines are being monitored by the psychiatrist for possible placement.
I don't have much helpful to respond with, but my heart aches for you. Such an emotionally trying time. One thing I do know is that, living with the AD devil everyday we gradually become accustomed to ever more difficult behaviors. The assessment of someone looking in from outside might be more accurate. Sort of like the old adage about not realizing how much banging your head against the wall hurt, until you stopped doing it. I'm sending you a (((hug))). Please keep yourself safe.
I agree, Folly, that the assessment of someone looking in from outside may be more accurate from THEIR point of view but as we all know here, that may not have too much relevance. I think what I would say to Polly is:
Keep up the meds. Get permission to up them even more if needed (we're not really talking about keeping him safe from meds here but from himself)
Make sure that all the legal stuff is in place and that you have identified some place he CAN go to if necessary. Not all ALFs could handle him either; they seem to have been designed for little old ladies in la-la-land.
Make sure there's nothing around that he could use as a weapon.
Give the caregiver lots of love and chocolates. BTW - what does HE think?
Polly, if you are going to keep him at home, you need to get the key-only deadbolt locks to ensure that he can't leave the house without you! You are fortunate that the young man didn't sue. The next person he hits might not be so kind, and then the facility he is placed into will not be one of your choice.
If you and the caregiver feel safe keeping him at home, and if he is controllable by you, and if you have the locks in place, then do what your heart tells you. However, BE PREPARED so that should the medications stop working, you have a place picked out to place him immediately. Because of the new medications, you might have a little time so that you can find the right place, but sometime soon, maybe within weeks or months, you may have to place him, and you need to be prepared not only with the place that seems best for him, but you need to be ready in your heart to place him as well.
You have to do what you know is right. We are here for you and know you will make the right decision. Here are a lot of hugs and love......((((HUGS))))
Polly, I am so sorry you are having to go through this. This is the same reason I am in the process of trying to place Lynn, except his aggression is aimed at me. God I hate this disease. I think this is a very personal decision. One only you can make. I do find it frightening that he becomes this way with your daughter. So far he hasn't attacked her, but I would be very fearful of the day he could. He is on some very strong medication, how is it working for him? It might be the answer to keeping him home a bit longer until you are ready. Though sadly, I don't think one can ever be ready. I know I never will be. But I also know I waited at least 2 years too long. Keeping you in my thoughts, Nikki
Thanks everyone for your hugs and comments. Briegull, I think the caregiver has mixed feelings about placement like I do. I think the hard part for him is it puts him out of a job, but he is trying to be objective. DH is doing well and very mellow today. I will be doing my assisted living facility shopping and I will chose one and be prepared. All my legal stuff was put in place in 2006. You are all awesome on this board. Nikki, how did shopping for a facility go? Was it difficult? How many did you visit? Gosh, this is horrible.
Polly, how is your husband adjusting today? I am having a hard time finding a place I would place Lynn. I leave them all crying, some of them it is all I can do to go through the "tour". Accccccccck. Course right now no one will take him either. I have to get the guardianship first. The hearing is on the 10th. I have applications into several places. There is one about 20 minutes away that his children and I feel is the best one. Problem is it could be well over a year before he could be placed. I hope I make it that long. *sigh
Polly, its my own opinion in your DH case with the aggression you do put him in a facility until the meds he is on shows hes totally under control -after and only after you know hes docile and can be medicallyl managed do i think you should have him at home around you and your daughter. the caregiver is at risk as well. when violence is an issue there is no thinking twice on the matter. you would deeply regret and feel guilty if someone were harmed including yourself. our dear loved ones are out of their minds and have no clue what they can do at any given moment. and even on the medications they can make them even more aggressive until proven otherwise. please take the steps to ensure your households safety first then see if you think you could bring him home later when hes more manageable. hugs, Divvi
You could take him to the ER as suggested and have him admitted for a medication adjustment, this could take up to 14 days. He may be required to have the adjustment prior to his admittance into any nursing facility.
After the medication adjustment you may be able to get some extra days or weeks of care in a facility from your insurance company. This would give you a break and allow you to make the decision to either admit him to a nursing facility or bring him home.
Husband is as docile as ever and doing great. He responded to the meds right away. I have weekly talks with the psychiatrist. She is really great. She says the combination of Depakote and Seroquel at the correct levels can do the trick for awhile. Let's hope it's awhile. Sorry you are having trouble finding a facility for Lyn. I am going to an open house at a new facility tomorrow and I have an appointment to tour another one on Monday. I am going to look at 7 - 10 of them. Some of them are too far away though. I will keep you posted on my progress. Keep me posted on yours.
Divvi, it was nice to hear from you. I hope all is well with your DH. We are very lucky that my DH is doing so well. I am not expecting it to last forever. I totally expected to be a poop queen first, but the anger appeared first. He is still very continent. I always thought it would be in the reverse. Actually, I never thought my husband would get angry (one of those things that will never happen to me).
Jimmy, thanks for your comment. I did take hubby to the ER. We were just lucky he calmed down immediately. I know that placement is only weeks away. It's just difficult to think that my husband of 25 years (March 31) won't be with me at home anymore. I am trying to get in the mindset, but I don't think you ever get in the mindset.
Thanks again to everyone. I will keep you posted. Nikki, please keep me posted on your progress. I will let you know how the open house goes tomorrow. It's a brand new facility.