Well the time has come. I received a call from the Veterans Home that all the paperwork is in place & I can place him. 2 of my children are coming with me on Friday. After I got the call it hit home. I could feel my heart beating in my chest. We could have gone tomorrow, but I decide to keep him home one more day. He was so calm & almost sweet yesterday, but this morning Mr. Hyde came to visit. He was agitated from the time he woke up. He wouldn't take his meds & he usually is good about taking them. The only one I was concerned about getting in him was the Seroquel so I put it in his pancakes. After a few hours it finally calmed him down a bit. If I had any reservations or second thoughts about placing him I don't anymore. These episodes of agitation that can lead to aggression & violence are just so sporadic. It is exhausting walking on eggshells & tiptoeing around him. As Jan K said, “I give myself permission to quit.” It's not only me, it's everyone who knows us. They all tell me that it's time. So say a prayer for me (& my children, because I know it will be hard on them too). I will let you know how it went on Friday.
Elaine - My understanding, been there, done that. When your loved ones tell you it's time, it's really past time for your own well being. I know that feeling in your chest You are fortunate to have children around. They don't want to lose you to the same disease. When Mr. Hyde visits, he really doesn't know who you are. You can't take chances. Take care.
Elaine-don't take anything there that you plan to ever see again. Everything walks. Patients wander into each other's rooms and go on scavenger hunts. I can't remember how many pairs of well marked shoes walked off.
Elaine- I can only imagine all the thoughts and feelings you are having.I know your heart is breaking at the thought of this,but let your head take control this week and know you are doing what is best for BOTH of you. I am glad the kids will be there with you. Does Tom know anything is about the change that is coming? Please know that my prayers,thoughts and love go with you .
Best of luck Elaine...I will be thinking of you. I know the feeling of second guessing yourself...but when Mr Hyde comes out too many times , then you know it's time.
As bluedaze* wrote ...everything walks...so only take the older stuff in first ...so far for me in 10 weeks, it's been 3 pair slippers, 2 pairs of shoes, track pants, watch, reading glasses.
This is hard. I've had multiple doctors tell me that sporadic violence is difficult to handle and any drugs would be sedating, I guess constant agitation is easier to medicate. I'm glad that 2 of your children will be with you.
Hope it goes as well as it can. Make sure you don't shut down too much after when the house is quiet. As least come here and talk about how you feel. Don't forget there's a sticky thread for that.
Peace be with you... know you are doing what is best for him. You are also doing what is best for you, although I know you are not thinking about yourself right now.
I don't think you are quitting anything. I think you are showing great courage, strength and kindness.
In my situation, I had planned, and planned and planned and consulted with elder care lawyers, estate lawyers (yes, in plural) and even a guardianship specialist. As it happened, H had a medical emergency and was transported from home to hospital, to rehab to alf and had hospice care there until his very fast death.
Also in my case the violence was sporadic. Some days were relatively peaceful and I really thought "I can do this for however long it takes".
Then there was the time when I was trying to get him at least to sitting, suppported up by anything and he kicked and screamed "don't hurt me". While I realized how damaged his brain had become, even that did not do it for me. It is not that I thought things would get better, I just needed to believe that things were not that bad, "not now".
It was not until the night of transport following many hours of not being able to get him up that I was shocked into reality by the emt's. The look in their eyes.
IMO, when the walking on eggshells is every day, every night, every moment, it is time. And I say this in critique of myself because I honestly do not know when that time would have come for H and me without outside intervention.
Dear friends here. Thank you all so much for all your comments.
I spoke to a lady whose husband is there (not yet 60 with FTD). She told me that she is basically pleased with the Veterans Home, but she told me that I also have to let them know when I have any issues with his care. She also told me not to take anything of value that might be “re appropriated” by other residents. I haven't told Tom that he is going there because he wouldn't understand. I doubt if he will even realize that we are taking a suitcase with us. I was told that I only need to bring his clothes, everything else is provided.
Wolf, I know the first few days will be rough, but I have so much to do in this house that I will just have to give myself a kick in the pants (or as Bama says, put my big girl panties on) & get going. Like I said I am blessed with 4 wonderful kids & I know that they will try to smother me at first. The day after I place him I have a soccer game & football game to go to & I have really missed going to the grandkids sporting events. I will definitely come back here to tell you all how I feel cuz I know that “outsiders” can only listen to us pour our hearts out for so long. Only someone whose been there or on their way can understand.
abby*, you are right, “when the walking on eggshells is every day, every night, every moment, it is time.” And that is what I am doing.......right now in fact. He is agitated & restless & he is wondering where his wife is. When I told him that I am his wife he said,”No you aren't.” Nothing new & shocking. He has been losing me for a while now. The first time it happened was heartbreaking, but now my heart has been put back together with duct tape, but I have a feeling I'll need more duct tape tomorrow.
Elaine, peace to you and your children tommorrow. you might be pleasantly pleased with his reaction. Just tell him that he is going on an adventure to see some of his old army (air force, marine, navy) buddies. It is amazing the comradarie that this men seem to establish with each other even tho they do not know their own names. There was an article recently where two men were roomed together in the memory unit and it turns out that one of them was a medic who ministered to the other who was wounded in WWII. They did not know their names but they found each other and re-established that bond. The brain is a wonderous and mysterious organ. As far as things going amiss, your DH will also appropiate some other items. It is all share and share alike. My dad ended up wearing one glove for several months that he got from someone else in the unit. No one ever found the other one??? Take some time to rest.
Elaine, I willl be thinking about you tomorrow and wishing you both a smoothe transition. As others have said many times, you are being brave and doing the right thing placing him. You've been through so much lately. Good luck.
My prayers are with you Elaine. We all will face this at some point in the journey and your thoughts and insights are invaluable to all of us. I will be most interested in how he settles in and how you settle in to life with him somewhere else. Peace be with you.
No doubt the missing glove Shellseeker talks about is with my DH's missing shoe. For weeks he wore one tennis shoe & one oxford--seemed to work just fine, and then there were the times he climbed into someone else's bed. But all in all, once they settle in Elaine, and you re-settle your life, things usually work out for the best. It's a process we all go thru, you are not alone. It sounds like you are really more than ready. Take care.
Elaine--wishing you strength as you take on this difficult task. You may be surprised to find, as I did, that your husband does quite well in the facility.
Elaine, I imagine you are a bundle of anxiety right now ((hugs)) If you have time I would suggest that you bring his clothes over beforehand. I can’t help but think it will be easier on you to have his room all set up before you get there. I imagine the unpacking of items would be stressful for him.
We too had some items disappear, like his remote control, but they were well marked and were always found. It’s a locked down unit, how far can they go? I brought in pictures, paintings, knickknacks etc etc, things I knew would bring him some comfort and sense of familiarity. I even went out and bought an exact replica of our bed set for his bed. Not sure that helped him, but it did me.. It looked more “homey”
I am so glad you have events planned with your family and that your children are loving and supportive. Let them smother you! I have said a special prayer for you and your DH… I pray both of your “transitions” will be peaceful. ((more hugs))
SO today was the day I placed him in the Veterans Home. It went better than I thought. Here is basically what I wrote on facebook:
First of all let me say that the out pouring of love & support from here has been overwhelming. Your good thoughts & prayers were so appreciated & let me tell you NEVER doubt the power of prayer! I'm convinced that because of all your prayers the transition went very well. Our 2 younger children went with me. We told Tom that we were going to look for our neighbor (his friend). When we walked into the unit he got a bit agitated & belligerent with the nurses, but they handled it well. I was only there about 5 minutes when they told me I should leave. Pat stayed behind & Kelly went with me. The social worked assigned to him took us to her office & she told us that we looked familiar. I asked her name. She is the daughter of a friend of ours. The Admissions lady & Financial lady were also very helpful & caring. I felt so relieved to know that everyone there has his best interest at heart. So we left & went to Tequila Grill to celebrate .......... life & I had a margarita. I am home now....alone. The first time in 35 years! I know I will have some........OK LOTS of difficult moments, but with love & support from all of you & my faith in God I will be fine! One more thing. I just found out that the sister-in-law of friend of ours will be one of his nurses......coincidence? I think not!
I also thank all of you here for the love, support & advice you have given me. Now here is what I DIDN'T write on facebook. It has taken all my willpower to not pick up the phone & call his unit to find out how he is doing. If he is having a hard time adjusting, what can I do about it? Nothing......besides worry. I am EXHAUSTED! I didn't get much sleep last night & then today was stressful even though it went well & now I am home alone. I am not used to this. I have lived here 35 years & I have never been alone in this house without knowing that he would be back from a business trip or meetings or wherever else he went in the evening. For the past 6 years he has ALWAYS been here with me. Right now I am too tired to think about it, but I know it will side swipe me when I am least expecting it.
Try to get some rest tonight-I can only imagine how empty the house must feel. They say it will get easier but for now it is ok to be sad. Just know you did what was best for both of you. And that you are loved !!!
ElaineH i hope the transition goes as well as can be. get some rest, there will be things to do but for now you need to relax and rejuvenate! my best to you and DH. divvi
So glad it went well for you. Your wonderful faith will help you so much just as it did me when my dh passed. Hope you relax and have some good sleep. Your dh is in good hands and wonderful that there seems to be people around him that you know directly or indirectly. We all here are proud of you. Sleep well...
Yes Elaine, get some much needed rest. They will call you if anything occurs, no need fretting too much over what we can't control. He is in good hands, rest easy my friend ((hugs)) ♥
So glad it went so well Elaine...he'll be well looked after I'm sure, plus it's great that you actually know someone that works there. I hope he settles in nicely You will have sad moments, lonely moments.....I find I can get through a day better if I keep busy. Have a well earned rest. ((Hugs))
Call if you want. I found when calling about my FIL when he was in one the nurses didn't mind (just don't make a pest of yourself). I found that the VA is much nicer about family than your standard nursing home. Veterans are a family and that probably is why.
Just thought I would give you all an update. Our daughter went to visit him today (not the daughter that went with us yesterday). She was so distraught about us having to place him there, but she knew it was what we had to do. I think she wanted to go to make sure that he was alright. She said that he seems to be getting along fine. He was glad to see her (doesn't recognize her as his daughter.....hasn't for a while). He asked about me once. She wasn't happy with his bathroom (says it wasn't clean) & she said that his room was drab. She took a family picture there for him & she is having 2 of the granddaughters draw some pictures for him. I have a feeling she is going to try to make his room more “comfortable.” I was going to wait a few days before going to see him, but I think I will call tomorrow & see what the staff thinks. I might just go tomorrow after church. It makes me happy that he seems to be settling in, because I was afraid that he would be angry & agitated. He still is very social & I think the fact that there are people around is actually helping him. The grandkids are anxious to go & see him. So am I.
This morning my 12 year old grandson (who lives across the street) brought over his 17 month old sister. They came in the house & after a few minutes the little one said, "where PopPop?" She's only 17 months old, but she didn't see him sitting in "his"chair & wanted to know where he was. (almost made me cry!)
I am keeping busy. I went to one grandsons soccer game & one grandsons football game, & vacuumed out my van. Tomorrow I am going to church & then possibly going to see Tom. This week I have all sorts of things I have to do. Things I couldn't do while he was here. I also have to get all the legal papers together to apply for Medicaid. I have to admit that it is strange being in the house alone (well I have 2 dogs & a cat) but I am the kind of person who CAN be alone. So I think I'll make it.
Oh, Julia, I have been wondering if you brought your DH home for a visit. I remember that you said you were thinking about it & I didn't see you post anything tell us if you did or didn't.
Elaine, try to make sure your hb isn't overwhelmed with visitors. Common advice is no visitors for 1 or 2 weeks so the person can settle down but that doesn't seem necessary in his case, he seems to be adjusting quickly. Th e other advice is that children shouldn't visit until their parents have visited, in this case your grand kids should wait until their parents had seen him. This way the grand kids can be better prepared. One person I know said the worst thing she did after placement was to visit shortly after with one of her kids, then a teenager. It was traumatic for the child she said she should have visited by herself, made sure everything was ok (it wasn't), and get any problems fixed then.
Elaine...I did bring Reno home last Sunday. I picked him up at 11am. We sat out the back garden of coffee, then out on the front porch, neighbours popped over, he didn't really remember most of them but he was very friendly and seemed to enjoy seeing them. One little boy 4 years old came over from across the road, was always at our place, loved talking to Dh, they called each other "mates" the smile on Dh face was priceless...the little one told him how he no longer needs trainer wheels on his bike. How sad and ironic is that, this little one is growing up and my DH is going down in reverse back to his childhood. About 2pm, he started to get tired and a little agitated, played with the recliner remote, trying to pull it apart...that's when I thought it was time to take him back. I just told him he had a Dr's app...he got in the car no trouble, and back we went. All in all it was really lovely, it went better than I thought it would go....he even managed to use the toilet on his own. The weather is so nice now, it seems so sad to have him locked up in there.....i will bring him home again soon.
Oh Julia, I'm so glad the visit went well. I know it was difficult taking him back, but you (& I) did the right thing. Sure wish you didn't live halfway around the world, I'm sure we could be good friends & pal around with each other! Are you getting used to being at home by yourself? I might go & see Tom tomorrow & if I do I'll let you know how it goes.
Yes, me too Elaine...but we're just a click of the mouse away on here.. I think I'm getting used to being on my own now...I'm not crying as much, just feel very sad. I went down as low as I could go, had to have a talk to myself and pull myself together...I'm doing a lot of gardening, the garden has never looked this good. I have to make myself eat as I go all day without eating...lost 5 kilos ( about 10 pounds)...the house seems so big and quiet...to be honest I'm getting to like quiet, rather stay home and potter about now, than go out... Prayers that your visit goes well Elaine...
Thank you cassie*....wouldn't it be lovely to meet you all...
You know, I really wonder how long it takes to return to who we were before all this devastation came to live with at our houses? I know that I took a little trip a couple months ago for a wedding without dh; I was so excited to go see friends and not be with him 24/7. Funny thing is, I missed him and felt kind of lonely. So, I guess this was a snapshot into what it will be like one day when he leaves me for good. I find these constantly conflicting emotions so draining, never knowing what the next moment will bring. Keeps me on my knees.
My DH was in a nursing home for 2 1/2 years before passing away in April. Even tho he didn't know me, I still miss going to see him and holding his hand.
I learned that it will never EVER be the same again. Mostly because it was always US. I used to say, it's realy hard to learn how to be a "me" instead of a "we".
Nancy, Gord has been gone for almost a year and I still say "we" and "our". I really think that those of you who have to place your loved ones have the very worst of Alzheimer's disease. It is so hard to deal with their death but to have to go through placement which must feel like a small death and then death seems to me to be pain and loss beyond measure. I salute all of you.
I agree with you jang*. Ann Davidson wrote a book entitled, "A Curious Kind Of Widow", ... her personal story of being married, but living apart from her beloved husband, who was still alive, but totally unaware. The title of her book describes so many Caregivers who have placed their husbands. If you have not read the book, do so. I believe you can order the book through Joan. (Amazon on her site).
Nancy, oddly, I bought that book last year when I was putting Gord into respite. Within weeks, he was gone and I was a real widow. I have never even opened the book. Perhaps, I will.
Thoughts about your daughter thinking his room was drab--Jeff spent 5 weeks in a geripsych unit which I likewise found a bit dreary, but I can find no evidence that he was troubled by the aesthetics of his surroundings at all, and I betcha the VA facility looks better than that. Sometimes places structured for AD people are going to seem "drab" to our eyes, because they're not filled with the things that we often do in our homes. Simpler is usually better and safer. I think they are more interested in having a comfortable chair and decent meals than they are in decor by Martha Stewart. I would encourage your daughter not to go overboard. A few touches might brighten it up to her eye, but he is not seeing with the same eyes as she is.
Jeff's dementia "neighborhood" at his ALF is more upholstered and froufrou than I personally think it needs to be, and I sort of think that's for the family more than it is for the residents. Also, because many people who move in there are "stepping down" from regular assisted living, and they want the areas to be similar for the more cognitively functioning people. But I think that by the time our spouses have reached the stage where most of us might choose placement, poofy decor is not very meaningful to them.
Poofy decor I agree with you Emily.. But I do think it is important to have things that they are familiar with. I thought I might have perhaps overdid with all the pictures etc on Lynn's wall. But he truly does love to look at them. When he is away for a hospital stay, every single time he gets back to his room he points at all the different things with a huge smile on his face.
As we know all of our spouses are different and will have different needs. Some may not be aware enough? But Lynn NEEDS stimulation. Without it he gets bored and just sleeps. He can still read so I put up posters, one with numbers and one with the alphabet, he really enjoys it. I also put up a piece of paper and in big bold letters wrote
Nikki Loves Lynn
He reads that multiple times every single day. I put it under the painting of our wedding portrait. That has become the focal point they use for Lynn when they are doing his restorative care. Works like a charm to distract him.
Like everything else, we have to tweak a bit until we get the right mix for our loved ones needs. Fiber optics have also been a real Lynn pleaser :)
Yes, so different. Lynn is clearly very visual. Jeff can barely process visual info at all, so it makes no difference. So, yes, must tailor to the individual.