Hello all, My husband who is currently 63 was diagnosed with early onset Alz at 57. As you all know this is a vicious disease and over the last 6 years I’ve watched the man who used to adore me (after 14 years married we were that couple that actually wanted to be with each other as often as we could) now flip to him hating me for his perception of me keeping his family away, treating him like a child for asking him to take a shower, brush his teeth, change his underwear or even me just changing the tv caused meltdowns.
He eventually became combative and I’ll never forgot the moment when I looked in his eyes and thought wow my best friend/husband is going to knock me out. After a visit to the ER and eventually 2 weeks at a geriatric psychiatric unit where they found the right cocktail of meds, he was released to 24/7 care with the idea of him going back to daycare or in-home care. He still hated me but not as much but he refused to be around anyone but me. At daycare he was flipping over tables and with in-home providers he was running down the street because he didn’t want anything to do with “them.” Meds were recalibrated etc. and as the Dr said over and over no meds will make him go to daycare or accept in home care. Well they could but he’d be like a veggie and they didn’t want to go to jail and I didn’t want that for him.
They eventually suggested a memory care unit. We are not wealthy and he didn’t have long term care so it would be private pay and most places start at $6500 per mth. Way way way more than our monthly income. People also suggested that I take leave but those same people didn’t understand that 24/7 care was killing me. My health had already deteriorated over these 6 years and I needed to be away from him for my own peace of mind. So I teleworked which made him happy and made me crazy because he became even more reliant on me. He wasn’t combative but he just didn’t want to be without me. would sit in the doorway while I worked and listen in on my calls or pace halls or drag his feet to get my attention, cough like he was choking etc.
Bottom line I eventually found an A/L home that I know is the best fit for him. Everyone in the home is active like him and all with Alz and some are even younger than he is. So I have 3 Questions. Q 1 what Is the best way to transition my 63 year young husband who is very very attached to me to an assisted living facility? He will struggle in particular at night. Even before the disease he didn’t go to bed without me. I’ve asked the owner of the A/L place and Alz. Association and lots of other professional but so far there are mixed ideas on how to transition him. They are: 1) drop him off and immediately leave when he falls asleep, 2) tell him this is our new home and spend the night with him and then in the morning tell him I’m going to work and stay away for a while, 3) take him to the A\L during the day like he’s going to daycare a few days and then wean him away from me. BTW this is my least fav because remember the daycare thing stopped working. Even tried it again numerous times but he still refused to get in the car. I also have additional questions. Q 2: How long should I wait before visiting once I eventually drop him off?. A week?? 2 weeks??? and Q 3: How long would you wait before taking him OUT of the A/L home to outings like lunch,dancing or the movies. He still loves those activities. Your ideas are welcomed and appreciated. Thanks all!!
The first few weeks will be very difficult for you both. You will feel selfish and guilty. He will most likely accuse you of abandoning him. This is when you rely on your religious leader if you have one, friends, family and us. And, of course, the staff at the facility. There should be a Social Worker there. I always relied on the staff, especially the Director of Nursing when it all got to be too much.
Taking him out to more or less resume your former life should wait a while. I can almost guarantee it will confuse him and will be a setback to him becoming accustomed to the facility. Rely on activities at the facility for right now.
We all send you our thoughts and good wishes during this very difficult time for you. Please come back often and let us know how things are going.
Follow his lead but don't allow yourself to be in the position of being with him all day everyday. I know some people say don't visit for 2 weeks but I always thought that was a little harsh. Your husband will need your support and comfort in the beginning. He'll be scared, he'll be vulnerable and he'll be confused. From what you shared with us, you're his lifeline. Be sensitive to what he's going through but don't let him start to expect your visits to be all day long or even everyday. You need a break. Do what feels natural. As long as he doesn't come to expect to see you every day all day he'll grow accustomed to the facility. Moving is hard under the best of circumstances, of course it's going to be difficult for your husband. There's no way around that. He has to come to understand that the staff are his new hands-on caregivers, not you. When we place a loved one in a facility our caregiving doesn't stop, it just becomes different. We become more of an advocate than a caregiver. We field complaints from our loved one and try to settle disputes within the facility regarding our loved one. Often we have to track down nurses to get information and we have to come to accept that our loved one will not get the same care at a facility that they got at home. In the facility our loved one is only one among many. We may have made it a point to shave them everyday but in the facility they may not be shaved for a week. Showers are usually twice a week instead of every other day at home. Our loved one may be left to their own devices more than they were at home and as a result their underwear may be twisted up to the waist and the shirt buttoned incorrectly. They don't get the same care they got at home which is something we have to accept.
Play it by ear would be my suggestion. While this is a transition for you it is also a huge transition for your husband. It will be more difficult on him although you're doing the right thing. Take it day by day but don't let him get used to seeing you all the time or every time he calls in a panic. You don't have to rush there every time there's a "crisis". You'll know he's safe, that he's being looked after. Gently wean him while you are getting the rest and recuperation you need.