I sent the following email to all friends & family -- you are all also my family so here is the message:
It's with a heavy heart that I have come to a conclusion to place Jerry in a small, very pleasant 8 person residence for the memory impaired. Some of you know that for the last four plus months I have had a live-in caregiver to be with Jerry so that I can go to work 3 days a week teaching. It has, for the most part, worked out fine but twice in the last week he became delusional during the night locking me out of the bedroom (we removed the lock), lunging at me, cursing and threatening to kill me and the caregiver. He thought he had a gun. He remembered none of this the next morning. He has been accepted in a clinical trial study for new medication and was tested for his condition this past Thursday. The specialist in Alz disease, Dr. Kovacs, tested him with the MMS test and he scored a 12 out of 27 (27 is normal.) Scores of 10 to 19 indicate moderate to severe with a 10 or below being severe. The hallucinations he suffers from are the beginning of Stage 6. He has all the symptoms of Stage 5. You can look up the signs and symptoms to understand what he and I are going through. After his visit to the clinical study center, he was very agitated. He went to bed early and when I went up to get into bed he screamed and growled like a supernatural beast and told me to get the F out of here and that he was going to kill me. I couldn't even grab a pillow. He was so loud he woke up Didier the caregiver and I was afraid the neighbors would call the police. When I left the bedroom he calmed down somewhat and we decided not to call 911. I hid in the caregivers room which locks for about an hour or so and then when all was quiet, I slept on the sofa in the living room -- or should I say I stayed up shaking. The only one who got any sleep was Jerry. Yesterday he behaved ok, today he is paranoid and difficult and is "deciding what to do about his life". He doesn't know what he means but he can talk in broad generalities. It is very sad. It is terminal with no cure but takes a long time. That's why they call it the Long Goodbye. I will place him as soon as I have the doctor's forms filled out (Monday) and I can take a deep breath for the drive to the home. It's a "normal" house with 24 hour caregiving. It has a nice yard with a lovely view and best of all it's here in Carlsbad just 6 miles East of our home so I can visit easily. I don't know why but anticipating driving him there to never come back feels a lot like euthanizing a pet. I know he's alive but he'll never be with me again after I drop him off.
Oh, Maggie, what a week you have been through!!! I am so sorry! It's going to be rough, but you will have the strength to get through it. We're all behind you with our thoughts, prayers, and hugs. Please keep us posted. We're here for you!
My big gut churning worry right now is that he has lucid days and moments that will make him so resistant to being there. If he tries to wander, the good news is that he is very slow!! There are alarms on the doors and the backyard/patio has no exit except back into the house. I am also going to get him some meds for anxiety, etc. so they may slow him down as well. Thanks for all the support. It's funny, you think I would feel so relieved but I feel even more upset than before. I have a constant feeling of anxiety. What I didn't tell in the email is that I have a medical condition that needs to be addressed very soon and I may need surgery. Stress can kill.
I am so heartfelt so sorry. I have often thought of that drive to the nursing home when the time comes and you put it into words when you said "never to come back". The place you are putting him sounds like a good place. Someone said to me that the main thought we must keep in our mind when these decisions must be made is what would our love have wanted. Yours would never have wanted you to live in fear or go through what you are going through. You are doing what must be done and you are doing the right things. My love and thoughts are with you today and in the days coming.
Maggie God Bless You! What a great job you did in explaining your situation to everyone. Sometimes it is so hard to articulate the situation to theose who don't walk the walk. Remember what a good wife, friend, caregiver that you have been and will continue to be, only the location changes. May you begin to get the rest and peace of mind that you so deserve. Arms around, Susan
Maggie, time is our friend when it comes to placement. they usually have a rough time the first week or so but as you can see, even Dear Nikkis Lynn has adjusted well now =give yourself a break. the days you will spend together once he adjusts wil be much easier on you both. divvi
My heart is aching for you. I know the path you are on. ((HUGS)) Lynn was as resistant as they come. I wont lie, it was bloody awful. The first day, was so traumatic I am not sure I can ever forget it. That first week, I spent a lot of time falling to my knees, just sobbing my heart out. It was so hard. I tell you this, not to make you more upset.. but to let you know YOU CAN DO IT! YOU CAN SURVIVE !!!
Here are a couple of threads I posted in that you may want to look at....
Nursing home http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1202
Nikki's back http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1928
Do yourself a HUGE favor and talk with his doctors about adjusting and upping his medications, anxiety, depressants, anti-psychotics… BEFORE he is placed. It will help your DH with his transition. Don’t be afraid to ask for some “extra coping help” for you either!!!! ((hug))
Keep in mind, the recommended transition period is at least 30 days. It took EVERYTHING I had to keep him there... but I knew if I brought him back home, I would never take him back! It took more than the 30 days... it will be 7 weeks on Tuesday... but he HAS settled in!!!
I still have to feed him, he refuses food from the nurses and will not eat on his own. I still have to bathe him and change him. But, it is no longer a battle like it was at home!!! He loves me again, and allows me to help him with no trouble! <shocked face> The transition to allow the staff to help him in these things, will need more time. But slowly, he is allowing the staff to help him. There is a male nurse there who even got him to start wearing pull up diapers!!!!!!!!!!!!!!!!!!! Something I could never do!
((Maggie)) You know it is time, you know it will hurt you..... but please know you ARE doing the right thing. If you can't do it for you, know you are doing it for him! I kept telling myself.. I need to love him enough, to let him go. I need to love him enough to assure above all, HE IS SAFE. And HE IS!! And your dear husband will be as well. ((hug))
Please know, my heart is breaking for you and with you. You may feel alone in your pain.. but please know .. we are all here for you. My email is in my profile, please use it if you want to chat. You and your DH are in my thoughts and prayers. Much love, Nikki
Nikki, its such a HUGE relief to hear you here in better spirits and to know Lynne is adjusting. he has made great progress and its due to your loving heart and special care you gave him for so long. i am SOO happy you are back..you rock, girlfriend! divvi you can be now crowned the Princess of Placement==::) haha. and in my book you have earned the PHD expertise to help those moving forward to accomplish it with an easier transition than yours -
Nikki, thank you from the bottom of my heart. I helps so much to know that I am not alone with these conflicted feelings. My head tells me that it is the right time but my heart is still breaking. When he has those moments of clarity, I start to question my decision but through my family here and my friends and family outside of here I am getting tremendous support for my decision. I will keep you posted, I may not be here for a few days after he's gone -- I'll need to mourn a little. I guess there's no easy way. Love to all of you but special hugs & love to Nikki for sharing her pain so openly. And hugs to Lynn.
Maggie, Thoughts are with you as you make this step. There are times I think I will have to do this too, then we make it through another day . I am SO exhausted today , it has not been an easy day. Imagining the adjustment for you will be hard at first but once he feels at home there, it will be easier for you to accept .A friend of mine just placed her mother and her mother fought and cursed her at first (never cursed before) but she is happy now and if she takes her mom out for a little bit her mom wants to go "home" to the assisted living,as she has friends waiting there. So I know there are cases I know of where they have adjusted so much faster than expected. Nikki, my thoughts are with you too. Any steps we take are adjustments whether at home or them at their new home. Maggie when he is threatening your life, it cannot continue as it is. He will have around the clock care , and you will get some much needed rest and have an actual "life" again! Sometimes i wonder what I would even do with myself now if he wasn't here, its been 7 years!
((Maggie)) Sweetie, take as much time as you need. I just came back this week.. whenever you are ready, you come back and we will surround you with love and support ((hugs))
In the mean time, if you need to talk about the confliction emotions, the way you feel torn between what you know you have to do, and what you want to do... please remember ... if it seems too much.... I PROMISE YOU, IT WILL GET BETTER!!! If you need to talk but are not ready to post, just email me. I have been there, and I would be honored to help you through this road in our journey. ((hugs))
((Divvi)) I accept that title with honor!! :) :) Thank you my friends, it is better.. so much better at last ((hugs))
Again, it is such a blessing to have all of you, especially Nikki, help me through this part. Jerry & I will be married 35 years in December and we know each other 40 years. Most of my life has been with this man. We have a 20 year age difference and I know you and Lynn have a big May-December spread as well. I can't decide if this makes it harder or easier. I am so confused. Today I am waiting for the on-call doctor to come and fill out the paperwork. Depending upon his availability it could be tomorrow or Friday (I work wed & thurs -- the spring break is over). The latest day he will be at home will be the 14th. As I write this Jerry is cutting up a banana and asked me if mayonnaise would be good with it. For some reason he has become obsessed with Mayo and puts it on everything. Funny he was born on cinco de mayo! I used to get upset by these bizarre questions, now in a funny way they help me validate that what I am doing is best for him. No anger today, so far, but it's early here in So Cal. Love to all of you. I'll keep posting until the inevitable.
Well, the on call doctor is coming on Wednesday to sign off on the paperwork for official placement at the "villa". I work on Thursday so I'll bring him to his new home on Friday. It's kind of funny, he's in a bad mood this am and told me Didier doesn't like him (Didier's reading a book and not constantly paying attention to him so that means he hates him!) and that I am ignoring him for my boyfriend on the computer (I wish) so he's sulking in his office. He just told me he's not going to stay here for long. Maybe he's prescient? Sigh.
Maggie, you are making a good choice and it is a loving choice. Someone wrote that the marriage vows don't include AD in the picture and that is so true. I believe that loving a person does not mean that I have to personally take care of him but to ensure that he gets the right care. When you are worn out from the grind of caregiving it is hard to appreciate the loving moments that they still can have. When you step back and let someone else do some of the caregiving, it gives you chances to enjoy some special moments. You will still have an important role in his life as his primary caregiver, some of what you do will change but you are still a necessary part of his life.
Maggie, therrja said it beautifully! My thoughts and prayers are with you while you try to cope with the transfer and emotions it will entail. I will also pray that he will settle in quickly and you will have the strength you need. Please keep us updated as you can....
((Maggie)) I am keeping you so close in heart and thought. ((hugs)) I had 4 days to get everything ready to move Lynn in the nursing home. Every single thing he did, I thought, that was the last time I would see it. Everything seemed so final, frightening. The things he did that would annoy the hell out of me, still did! but they were also almost endearing. Like now I knew I wouldn't have him around, I couldn't let him go. Not sure if this is a "normal" for most people? But sure did happen to me!
2 days before he was to go in, he hit me. It stiffened my upper lip, gave me the extra strength I needed to do what I KNEW WAS RIGHT. Dearone, It will be hard, talk about as much or as little as you want to. Just know, we are all here to help support you through YOUR transition. Keeping you in my thoughts and prayers, Nikki
I don't know about the mayo -- I'm Italian (on Mom's side) and I think garlic goes with everything!! Thanks again Nikki, you made me cry (again). I feel exactly the way you describe. Now that the decision is final I am missing him already and in a strange way feel more loving. I think I need a caregiver for me!
I know this is a very difficult decision--going through it right now also. But, you need to consider your own safety and his. I'm concerned about the safety of my children. John screams at the kids for entering his room and I've stopped him from hitting our 10 year old.
One of the things you might want to consider since you are placing him in an unlocked faciltiy is one of those GPS bracelets for kids and a baby monitor so the caregivers can hear if he gets up during the night.
John is in stage 6 and is very paranoid. It's so awful to see him like this. Good luck.
Hi & Welcome Carol, I am so sorry you have the need to join us, however, I am glad you found this forum. My husband is 58, he has Frontal Temporal Dementia (FTD) problems started about 6 years ago. I always hate when younger children must deal with this dreadful disease. Please feel free to post at anytimes.
((Maggie)) continuing to hold you in my thoughts and prayers.
((Carol)) I am sorry for all you are facing. So tragic that your children must see their Dad this way, heartbreaking :( I am glad you are able to find the strength you need to protect your children. You are also doing what is best for your DH, protecting him and keeping him safe. Wishing you peace and comfort. Much love, Nikki
My DH is still at home but at some point every person in his family who has had AD had to be placed outside the home. So I am sure at some point I will have to make that difficult decision also. It sounds like this is the safest decision for all of you. My BIL is actually very happy in his Alz home. So hopefully your DH will adjust quickly to the change.
Thank you Lizbeth. My only response is that I probably already waited too long. I can't sleep through the night without dreading the possibility of another episode. Thank God I have help from my live-in caregiver. You know there has not been one person I've talked to who hasn't supported my decision. Start planning yours. Hugs, Maggie
Well, it's a matter of less than 3 hours and he'll be at the Villa. He was a horror all day yesterday -- I was at work -- he spent the day dialing phone numbers in the call log and managed to call my work. I don't know how he does it, he has no phone books or any phone numbers. He must redial from the call log of received calls. When I got home he was nasty, angry, ugly. This morning he's a little better, just his usual "needy". Today at 1:00 pm PDT I get my life back, and hopefully my health.
Thank you Divvi, you "guys" are the only ones who really understand. I don't know how I'm going to feel - right now I'm in between a nervous stomach and numbness.
Hugs to you Maggieroni....it has to be a tough decision...I know I am also considering that option, despite my promise that I would not put my dh into any nursing home...I just know that for me, I would be making thousands of trips to the nursing home just to try to calm her down when she rages....Besides, I am living apart since about 2 weeks, and find that I am worried to death about what is happening while I am not there...I am developing a "what will be will be attitude." I do hope you will gain some comfort and my heart reaches out to you....Hopefully you will gain a bit of life back and feel better about yourself........I will be here for you if you need it......hugs
Maggie, I can only imagine what pain you are going through, I hope you will get strength from what Nikkie has told you, she is giving you good advice, as only one who cares and has been there can...Prayers and Hugs to you.
I just got home from the ER..... so I wasn't able to reply to your emails. I HAVE NOW! I am truly concerned for you. If you are here lurking... or read my email....please check in!!
((Maggie)) I hope things are not as bad now, as they were when you wrote your email..... Lets talk sweetie, don't give up. We are here to help, love and support you. I AM HERE!! ((HUGS))
I feared this. The smaller care places are wonderful, but are not always willing or capable of dealing with the more aggressive residents. One hour at a time right now. You can't handle more than that at this moment. Maybe they will increase his medication? Maybe they will need you to stay with him for awhile to help keep him calm. I had to do this with Lynn the first few days.
If worse case senerio, they refuse to keep him. Hun, it is NOT the end of everything. Try and stay calm, ok? IF they refuse to keep him, you check him into the hospital, ok!? Then you search for a facility who is able to care for "difficult AD patients. Not just a lock down unit, but the ability to handle the whole realm of complicated symptoms that can effect an AD victim.
It will be ok!! I am with you in spirit and I hope you can feel me trying to lighten your load. Much love sweetie.. Tie that knot and HANG ON! ((HUGS)) Nikki
Well, I'm ok. He made it through the first day and they haven't thrown him out. They got him some meds that will work on the psychotic behavior. In the meanwhile, I'll keep him there until the end of the month and then I will move him to a much larger facility that has Alz care, assisted living and skilled nursing care. They are more skilled at difficult Alz patients. Also, they will have more activities and it's more like a hotel environment which I know Jerry will like. It will be nicer for me to visit as well. It is 30% more expensive but it will be worth it. Now I have to work on protecting my assets which is next on my list. His retirement money should last him about 3 years and he will get some help from the VA aid and attendance program. Thanks to Nikki for calming me down and helping me to feel less trapped and desperate.
Thanks, Mary. I am still adjusting to the idea that he is not here. I don't have to hide things from him (his meds, the brandy, the phone LOL) but I keep forgetting that I can behave "normally". I actually went for a walk with a friend and her little Bijon dog (spelling?) and came back and took a nap. Nobody to accuse me of running around with my "boyfriend" or waking me up to eat dinner 5 minutes after we finished eating dinner. It's funny though, I haven't been able to concentrate very well on anything. I can't read or watch a movie without getting anxious. I guess it's going to take some time. Like Carol King sang, "It's gonna take some time this time to get myself in shape" Mary, how's your situation??
Maggie, briegull is right...take her advice! As for my situation, my husband had a meltdown at lunchtime, but has calmed down since then. I figure he'll stay like he is until he has an episode that creates a crisis like the others have gone through, or he has another stroke. His ability to feed himself is okay, but he sometimes is using the right utensil or sometimes he is eating finger food with a fork and using his fingers when he needs a fork. And he is eating by rote...he has no idea what he is eating. He can't stand chicken and shrimp, but he eats them now without question. And he cleans his plate no matter how much is on it and it takes forever. He has to concentrate so hard on getting the food on the fork and getting it to his mouth. I don't mind how long he takes - I just watch him after we finished and we act like it is normal. He wants to go outside when he needs to go to the bathroom, and has to be led to the bathroom. Sometimes I think he can't go on like this much longer, and other times I think he'll be this way for years! Divvi has been doing it for years, as did Sandy and others. I guess when he has a bad day, I get overly worried, and when he has a good day, I get optimistic. Thank you for asking!
Mary, yes my DH has alot of resemblance to yours. he would go out to pee and poop prolly if i didnt lock the doors. i find him in corners of the rooms hiding getting 'ready ' to do his deeds..:) i literally cant take my eyes off him unless hes sleeping! and then i usually watch to make sure hes breathing..haha.. he still uses fork and spoons too pretty good but i have seen him using his toothbrush to eat refried beans:) accckkk...(nikki:) ..my DH plateaued over 5yrs in stage 5...then after getting to beginning stage 7seems to be progressing a bit faster. i see not dramatic but small changes weekly. he is using the bathroom for urine less and less and more the depends now as well. i hate to see him get to that point but fully expected it as well. Mary you hang in there, you have a great outlook that will lead you far. your DH will reap the rewards of your excellent care:) divvi
Maggie, i am sure it will work out in a facility better suited to caring for AD..best of luck!