PaulC I am happy that the transition is done. I wish you all the very best and a smooth transition for you wife. I hope you can feel really great about all that you have done, and continue to do.
I am getting ready today to take Dado on a small excursion., just for a couple of hours. We can still manage to get him in my car. I pack a lunch and we go sit by the ocean for awhile. He does not get out of the car, does comment but I am sure it must feel nice. Mary75* he is now one week off Aricept and I think I am noticing some changes....could it be that he says a few more words now...? Oh how I would love him to say just anything to me.
Today hasn't been so good. Hoping we can get the glitches out of the system. L might need a hirer level of care. Some good things did happen today. We shall see.
Coco, I think you'll see the optimum in a month. Eric loved to be taken down to the beach. I'd pack a thermos of tea and a snack. It was the sight of the mountains and ocean that uplifted him. Good memories.
Paul, the first several weeks are hard with everyone adjusting to this new reality. I hope you get those glitches worked out very soon so that you and your son can relax and enjoy these last weeks of summer. Good luck.
Yesterday's big glitch was caused by L. She insisted that the staff didn't know how to run the tub and she had to instruct them. Found out later that she refused to go into the tub while the door was open so they had to close the tub door and assist her in climbing in, and that caused other problems.
Her cat arrived last night and makes her happy. Also kept her up most of the night. Cat seems happy, I'll see the cat in 2 days.
It will take time. Unfortunately people with FTD have little patience.
Biggest problem to date is the staff knocking on my wife's door too often. Announcing breakfast, lunch, dinner (she knows and doesn't need or want to be told, all of this knocking agitates her and lowers her quality of life). And knocking at 5am or 10:30pm for no good reason (staff announcing they arrived or are leaving). The executive director is putting out an order today that no one is to knock on my wife's door between the hours of 8pm and 8am, no matter what. They've been asked to stop notifying her about meals.
My father's Independent Living home was worse, everything was done over the PA. So every meal announced, every religious service announce. I remember visiting and having to stop talking during the announcements, they were that loud. So I am thankful L doesn't have to deal with that.
But also a great deal of freedom, I'm not walking on eggshells all of the time. I see large changes in my son. He went grocery shopping with me, first time in a long time. Lot more cooperative. Doing activities he has been avoiding for a long time. Suddenly not every minute of our lives are revolving around L's schedule and desires. This is not to say he isn't sad about her going.
This month we are giving up our routines. Glad this is happening a month before school starts. We need to build new routines, ones that involve L.
A friend who has been through this told me that everything that has been pent up in me over the past few years is now coming out. That I am probably now grieving when before I couldn't.
And hopefully the 50 to 60 phone calls I get a do will reduce to something smaller once L builds more of her own routines. I am also seeing some problems more clearly.
I don't want to appear that I am now living as I please, lots of my life revolves around L. But not every minute. And I am now spending a lot more time with our son.
Hello and I hope your excursion went well. I cannot imagine anything more comforting and restorative than sitting by the ocean. I too am sending my hopes all the way to Hawaii for Dado to talk with you.
I have a close friend who is challenged by a serious illness (not dementia) and she has so much dignity and grace. You and she remind me of each other.
Paul, I'm glad you have some freedom and time. I agree with your friend that now you will see the release of what has been pent up inside for these last few years - by both you and your son. It's great that you and he have a few weeks to adjust before he returns to school and good luck with those phone calls.
abby* what a wonderful gift to me to read what you said, you are so kind and thoughtful I really needed that. And the other day Dado and I had about 3 hours just sitting in the shade, listening to the waves and having the warm puffs of trade winds blowing. I could see at the entrance to the large inland pond about 15 giant turtles going in with the tide!! They looked fake, like floating bubbles.
Going to get him again today, I missed a visit day and it has been 3 days, I feel bad and sad that I had to cancel yesterday. My heart is just sore, in a strange way I still keep thinking he is going to get well.
And Paulc I hope your phone calls slow down with the days going by, wow that is a lot of calls. How nice to hear that you and your son have some free time. You are a good and faithful husband and person.
Hi everyone. I posted in the Book Recommendation sticky about a new book I have found so helpful and wanted to share.
The book gives me hope that I will eventually be able to navigate the life alerting transition of my husband going into care, in a healthy and positive way. I highly recommend the book for additional insight into our processes.
I wash the feet of the blessings I receive with humility which is a lovely spiritual way of saying I've hacked and slashed every inch of my way to where I am and if I fell and slipped I just stayed there until I got up off the ground because no one was helping me.
But as I've said before I belong to a religion/philosophy of one because I'm such a skewed personality and have such divergent viewpoints that I fit no where. For instance I can't take a god seriously that has any need of deference nor do I have an issue with deference because that's how some people envision giving respect.
That doesn't change that when I truly seek spiritual answers they tend to come and for me to take that onto myself just because I have issue with form in present belief systems would be where I do a Thelma & Louise off the cliff.
Deep inside I really do believe that I'm a privileged guest which is reinforced no end by the obviousness that life is going on and will go on without regard to me whatsoever. And since that not only makes so much sense - it is blindingly apparent every day I look around, I can't invest deeply in actually believing it's all about me and what I want now. The intensity with which others believe this has always fascinated me. It shows me I'm never really in the same pool of experience so many have.
Can I tell that what I did affected when I would feel normal about what's happened (use your own terms)? No. Do I feel grateful for it? Oh yes. Am I done with pain? No not at all. Life is complicated even though humans want simplifed forms for comfort.
I haven't just survived this. I've been given new gifts. I can't take my lifelong low self esteem seriously anymore in the face of my sacrifice for my partner. It's true and I could explain in detail why I know. It turns out I can endure a lot and go great distances through adversity without capitulation (falling down or wailing are style - not substance).
The disease is not done when they pass. The disease is done when you are done with it and you are done with it when it is drained of it's power. The tragedy is that my wife got a fatal disease.
The blessing is that I am doing my duty to her and (it feels like) I've been given my life back where somehow I've survived the very real things this did to me, I feel strong to go forward and feel like myself, and I have her in my pocket where I understand these last months of her existence are not her definition but the ten thousand moments she created still are.
I have much more than that. I know so much about what I want and don't want and who I am and who I'm not. I feel comfortable making choices again. I feel empathy again. I feel happy and interested again as a normal state. I appreciate being here in a genuine way. I've gained things from this experience.
The bad times aren't gone. I miss her all the time but her things and her handwriting are a comfort not a threat. The war that was so real in 2012 is long over and I know it was in May when this arrived so 14 months for those counting.
I mean what I said at the start. I feel humble. I worked at it and I believe it helped but I have no way of knowing. Washing the feet as I understand it is a sign of respect and giving back and if you don't think it's a blessing to feel this way - just ask me. I have new feelings I've never had before and they're a lot more complex than before. I'm not sure any joyous moment won't have a tinge of saddness. It looks like the time when the tinge of saddness colored the joyous moment may have largely ended. I hope everyone finally arrives at such a state.
"The blessing is that I am doing my duty to her and (it feels like) I've been given my life back where somehow I've survived the very real things this did to me, I feel strong to go forward and feel like myself, and I have her in my pocket where I understand these last months of her existence are not her definition but the ten thousand moments she created still are."
So very true Wolf, so very true!
You have suffered greatly, you served your time in hell. I am so glad to see you have worked your way through the pain to a place where you are able to still see the beauty in life. That you have reached a place where you can remember your beloved wife as she was, for who she was and all that means to you. That you can see and truly feel that you haven't simply survived but have along the way gained new strengths and purpose, that is a blessing for sure!
You have come a long way my friend and it is wonderful and moving to witness the changes. ((hugs))
I was just reading what you wrote and thinking how do I understand what this flavour is compared to the long run we enjoyed and the word 'carefree' popped into my mind. It has that word in it but it used to mean long drives together looking around not really thinking about much and just taking it in. It means going to the ballgame and just wondering if you'll see a good game or if you want pizza or a hot dog. It means fantasizing about simple stuff the same way clouds just sort of drift through.
I don't have that.
I was also thinking about happiness. I don't have that either.
I feel ok in a more neutral pretty good kind of way. Along with the seven dwarfs of annoyance, frustration, lonliness, lonliness (they're twins), grief, depression (actually it's depression's kid brother morose standing in), and sad (always last) - are a new bunch that came in May and show little sign of leaving. Peace, content, amused, and interest are four of them staying with me right now and hope might join us later.
It's like two people watching a nature scene. One says "Nothings happening" and the other one says "ya, isn't it great?"
2nd weeks has been much better than the first. L is adopting and they are adopting to her. The ALF is doing some stuff I thought they should have done the first week, but they are short staffed the acvitivities director returned from vacation just after L moved in. She is getting used to it and is participating in some activities. She went with other residents to see Miss Saigon today. There is a weekly wine and cheese group.
I'm not sure how much longer she can take her meds herself, she made a mistake on Friday, compounded by leaving the pill box out and the cat knocking it over.
One good part of her going to Miss Saigon was to meet other highly cognitive residents. Unfortunately one person is thinking of moving to a facility very close to our house because it has a gym and swimming pool. It is run by the same company but knowing its history I suspect it is very expensive (high rise with Independent Living in condos, many purchased by speculators) and that people in the ALF section are worse off then where L lives and that the ALF is a lock down. I could be wrong but that was my experience where my father lived. I really don't want her in walking distance of home, shopping and her bank. I guess I will have to look into it.
And I built a slot car table today and set up set #1. We will also use the table for some of my son's activities. This is my first attempt at carpentry. Flawed but very solid.
Paul, glad to know things are progressing well for both of you. I don't recall how long your wife has had FTD but based on your posts, she seems to be at the stage my husband was in when he was diagnosed in 2008. He was quite functional; unfortunately he did not accept being in an ALF.
It's nice to see that you and your son are able to enjoy some time together without all the drama. Hugs to you both.
LFL, I would say over 17 years with FTD. The MRI taken this month is the first time we have seen atrophy in the brain, I'm waiting for the neurologist's report. The radiologists report doesn't say much, just no tumor, no bleeding. Knew that.
Today she took a bath and complained that staff still doesn't know how to operate the tub. She said she was going to complain to the executive director so I sent a note to the exec dir to let me know how it turns out.
Unfortunately the only way to stop the phone calls is to turn off my phone. She can send me text messages, which she does.
While we go through this experience I can tell you something I know. I will not be going to any nursing home when I can't go on by myself. I will be going to Amsterdam. I don't believe in suicide which I know because parts of me considered it in the darkest times.
When I go to Amsterdam it will be because there comes a time when it's best for the tribe that I stay on the other side of the river. It's on such a sharp point that in my opinion entire philosophies swing and often lose. What we believe does not apply to us; which is the sort of messy conflict of interest that arises when you stick a soul into a carbon based biped that's here mostly to procreate and raise the young but with a brain that can do quantum physics.
I would be extinguishing the light myself because it's really a choice between taking up air and food other's could use for the benefit of shuffling down a corridor trying not to wet myself. My wife is there right now and she's beyond shuffling; but I promise you she would be giving this thinking two thumbs up. In fact if I put my wife on tubes to keep her going I can hear her asking me why we're doing this.
All this predicates on the idea that I understand myself overall and that I understand my partner in crime quite well too. And it all ties back into our basic beliefs about what is right and what isn't which is often a complicated thing.
There's form and there's substance and often those overlap. Like that saying that going to church doesn't make you religious anymore than standing in a garage makes you a car. Which is true - it doesn't.
But that seemingly obtuse reference is actually the fulcrum of the lever by which we move massive things. When we go to church without belief we are still empty inside like the car that isn't there either. But when we do things with belief I think those things have the best chances of 'success'.
So when I say that I don't believe in suicide now but I do believe in sucide then, I see that as taking responibility in life by taking a position I believe in which may or may not make sense to someone else, but which is consistent for me.
I can do useful things now still and I want to. Then I will not be able to do useful things and I will not want to. I was given my soul, and my mind, and my life to be a person. I not only have that right, I actually am the only one with that responsibility.
I said it was like a fulcrum and I've talked repeatedly about empowerment but those only become useful tools through what we actually believe inside. We may not find that or ever need to if an idea becomes clear we act on that changes the landscape. If we don't find something new though it's the slower road which leaves more time to figure out what we actually believe inside.
I'm not suggesting doing a paper on it. I'm telling you that as I prove to myself what I do and don't believe in, I'm finding life opening up. I was planning to survive this as a goal but it's moving and now I want to own my own mortality and not give a flying about it.
I want complete and absolute freedom of ownership of myself and I accept every consequence. And because of that, yesterday when I thought about my own future where I have watched so many fade away in those hallways and the little rooms in them - I felt how so very much I don't want that. And I immediately empowered myself not to.
We don't really know each other. What I do next is look all this up until I know the state it's in and how it actually works. I don't dream dreamy little dreams, touch myself, and declare myself done. Which is why when the beasts roaming this valley of the shadow of death find me - they're always suprised I'm actually looking for them. It's so simple. Either you do the work or you're guessing.
You know what happened to my depression? It left. It got tired of me kicking it.
And do you know what I'm going to do with my life? Neither do I. That would be boring to me to know. I'm not a laborer. I'm a human being. My job is to be.
I confess that after I made this topic a "sticky", I did not read it. I was happy to provide it for those who needed it, but I was not there yet. Well, here I am, confused, angry, hurt, and emotionally devastated after placing Sid two weeks ago. I plan to start reading on page one of this thread and to keep going until I come to the end. It will take me awhile, but I am looking forward to your wisdom.
((Joan)) I continue to hold you and Sid in my thoughts and prayers. As you will see when you read through these posts, it's no different than any other thread, we all have our own beliefs and feelings. No two of us have handled this part of our war the same. But you will always find compassion and someone who can relate to what you are experiencing. ((more hugs))
It is 2 AM, and I am not sleeping. Apparently, neither are you. In the years since diagnosis, I knew the day would come when I had to place Sid (although honestly, I had hoped he would die before that happened). I knew it was going to be difficult emotionally, but I really wasn't prepared for how hard it hit, and how difficult it is to see him there. I think it would be less traumatic for both of us if he were unaware of what was happening. That was another thing I was dreading - that his physical condition would put him in a facility before his mental condition. And that is exactly what happened.
He is perpetually confused, can't remember anything, BUT he is completely aware of his surroundings; he knows where he is, and he hates it. But to give you an idea how his brain is (not) functioning, he keeps telling me that if I let him come home, he will take care of himself, and he will even help take care of me and my bad back. He has completely forgotten the days and nights of him crying and saying his pain was so bad, and he was so disabled and weak that he couldn't take care of himself anymore, and that he kept asking me to do more and more and more for him.
I haven't been up this late writing on the computer since the early days after diagnosis when I wrote so much that I started the website.
Well, one and a half Xanax should have me asleep soon. I hope.
I have been following your latest crisis with Lynn. I was happy to hear that he is on the mend.
How I wish we lived closer Joan! We are all so different, unique... but in this, you and I are much the same. I have no magic wand, I have no shortcut to help you through this, but I can definitely sympathize! I do understand all of what you are expressing. And I am remembering that during Lynn's transition period being in so much anguish that I was begging God to please, please just take us both right now! Nothing has ever hurt as deeply. And I know you are suffering so deeply right now. It makes me wish I could reach right through this computer and embrace you in a bear hug!
Truly Joan, write or call anytime. You are never far from my thoughts ((hugs))
Joan, when my DH was placed, he knew where he was and constantly said he wanted to come home. I let the staff know my response, and told everyone to respond the same, so all could follow---"The Dr. said you need to be here because they have to keep track of your Heart and meds. We can't do all that at home. The Dr. said." It was never "me" being the source of him being there.
As his CHF advanced, he finally stopped asking. He knew where he was, he knew me, and thanks to one of his relatives, he knew he was going to die. I told the staff how I was handling it and they followed me---"Only God knows when we're going to die. When he tells you, then you'll know, and that's okay. Until then we aren't going to worry about it. if the idea comes in your head, I want you to think about seeing your Mom and sister, and meeting my, Dad...oh, and don't forget you'll be meeting Chantey and Nixie, and Dusty, and Babe, and Tessie, and all the rest at the Rainbow Bridge and you'll have a whole army with you at the Gates." He chuckled about that.
Placement was no picnic. But just as with every other stage, we do our best to see them through. When we get them through with dignity, wrapped in our love...and we survive...Dementia (whatever the kind)loses.
Though Ron passed much sooner than projected, we were blessed with a quick, painless, easy, passing.
Visiting these threads as a Caregiver in need of support and as one sharing support when I could helped me get through the years at home. This thread, though new, helped me through placement. Now, I check on the Widows and Widowers thread occasionally and once in a while toss something on another thread or 2 in hopes of passing the blessing of this site on to those on the journey, now.
Someday, I hope to see notice that we're having a huge beach picnic with a big virtual bonfire, and we're going to toss all these threads in because we don't need them anymore. I'll bring the matches.
So sorry for what you are describing Joan. As difficult as Jeff's eruption of "crazy" was when I first placed him, at least his mental state was such that his outlook would have been no different whatever the setting.
I recognize it as fortunate that he is now in such a condition of mental decline that it doesn't matter where he is, who feeds him, or attends to his needs as long as there's kindness.
Joan despite your upheaval and pain, I have to say it is SO GOOD to see you up and about, handling it even though you really don't want to. I am so proud of you.
My "settled in" pain jumps up at weird times. Last night about 1 am, I woke up, and thought about the times when Dado was still going pee in the toilet, in the middle of the night. I would get up, (sometimes 10 times a night!!), walk backwards while holding his two hands to slowly walk him in there. As awful as it was to see him tottering and stumbling, I thought of how now he CANNOT walk at all, and well, it brought on a torrent of sobbing and empathy and sadness. My cat Fuzzy Wuzzy was at the end of the bed, he woke up and came and laid right on my chest, and reached out his furry grey paw and touched me on the face. Getting emotional again just thinking of it.
It seems like just yesterday when he was diagnosed.
Ditto to Emily's last sentence above. Sounds trite, but things will get better Joan. Last night was Steve's first ER visit (fell and lacerated forehead, required stitches, CAT scan). It was nowhere near as traumatic as I had imagined it would be. Unfortunately, we just have to accept what comes and deal as calmly as we can. I guess I need to get on the ALF staff to use the helmet on him more, even though he doesn't like it.
My heart is sad today, Lynn's roommate died this morning. We were pretty close...he did not have dementia- He was aware and knew he was dying. I visited with him every day and so often he would tell me he wished I would marry him too because nobody loved him like I loved Lynn. Broke my heart for him. He was one of the abandoned I have adopted.
I am glad I was able to see him last night. He was very happy to see me and told me I could not be away that long again. I promised him I wouldn't...Had I know it was to be his last night, I would have stayed the night with him. He was on Hospice, but still, he died alone :(
We lost another dear soul this morning who has touched many of our hearts. My niece was particularly close to her and I dread telling her the news. She too was abandoned and I just can't understand it......She would come alive at the music shows and I will miss her clapping and singing. They missed some beautiful moments with this lovely lady!
Ahhh, I wish I could not care so much....at least, they are no longer alone.......*tears*
Their last thoughts would be that someone cared, and knew you would return. Maybe that's why they were able to pass. Because you cared. Such LOVE, be proud. Bonnie
Here I am 2 1/2 weeks after placement, and this is what I have learned. No matter what advice I receive from professionals and friends, I have to do what feels right for me. Everyone says that Sid will adjust better if I go to see him less and less, and I don't have to call the nurses every day. They say that I will adjust better to my new "life",if that's what you want to call it, better if I don't go so often.
I've tried it their way, and not only is he more anxious when I don't visit, I am more anxious and upset. After 43 years together, I can't follow the advice to leave him in the professional hands, and go live my life. I can only do what feels right for us at this time. It may not be right for us next week or next month, but for now, Sid is calmer and more cooperative when I visit, and I function better on my own after I have spent some time with him. I won't push myself to go when I am too tired or don't feel well, or have a lengthy activity, but otherwise, I will go 5 - 6 days a week.
Joan, I think you are the only one who can decide what Is best for both Sid and you. I sometimes wonder if the professionals say what is best for "them" and not necessarily you or the patient. Good plan at work, take care of yourself in the mix.
Joan--I visited almost every day from the start. But I kept 2 things in mind: that I didn't have to stay long; and that I took one day a week "off". Also, if I am too tired, don't feel up to it--I say to myself "if Steve was healthy, he'd tell me to stay home today". That sort of takes the decision out of my hands. Another thing I did do after he had been there for a year--I joined a gym that is a block from the ALF. It makes is really easy to pop in after my workout and then I have the rest of the day for other things.
Pay attention to how Sid behaves, both when you are there and after you leave. If he is calmer when you visit (and this calm extends to after you leave) then you should continue you schedule. And what works this week might not work next week. Or it might.
I've had all sorts of advice from different ALFs (I asked this question when touring them). There was disagreement on what works best. I have a friend who visited her husband every day to help him adjust and then realized this was hindering his adjustment. I know other people where the visits helped both the person in LTC and the caregiver.
Sounds like you are doing what is best and you are paying attention to the matter. Moving a spouse into LTC is a traumatic matter for both of you and how to best handle it is different for everyone.
I'm with you Joan. My husband IS my life and I don't function very well when I don't spend time every day with him. Although he keeps declining, he still knows and loves and needs me there. I, of course, still need him and want to take care of him. His placement just means that I can love and entertain/comfort him and don't have to deal with the behaviors, ADLs, etc.
This is a bit of a surprise to me but I have found that the longer he is there, the more I want to bring him home. It's because he is calm there and does not need anti-anxiety meds. I have to continuously remind myself that he is calmer there because his needs are being met, unlike what we could do for him at home. Just saying, in case you feel those thoughts encroaching!
Hope you are still pampering yourself with lots of naps & some treats and no worries about absolutely anything else.
You hit the nail on the head. It's like you were reading my mind. When I see him there, I desperately want him home, but when I see all of the care they give him, I realize that there is no way I could do it at home. Our social worker told us that we need to concentrate on spending "quality" time together when I go to the NH to visit him, and that's what I'm trying to do. I remind him of that when I see him, and yes, I try to make our visits of love, comfort, and entertainment.
Geez, isn't it amazing that the best support and understanding I get for my feelings is right here on my own website.
MarilynMD ... I think you have given Joan some excellent advice, and I will try to heed that advice when a room finally opens up for Clare. I am planning to visit with Clare every day, but your advice makes a lot of sense.
Well it has been 2 weeks since placing my husband. The first week was rough as he ended up in the hospital with chest pains I think from anxiety. I am gathering all my paperwork for Medicaid so am praying that goes well. I will have to pay out of pocket until I am approved which they say will be in 30 to 45 days. I have been going almost every day but what I notice is my kids are now visiting their dad more than when he was at home and that is a good thing. When I went today he said he wanted to come home. At least today I explained again for the millionth time why that is not possible and I was not emotionally upset by it. Tonight I noticed that he no longer knows how to brush his teeth. This is new just since his placement. He also needs prompting to shave. Each time I visit I am more and more sure I made the right decision. But it is still hard. I am starting to get to know some of the caregivers on the unit and that is helping me to adjust too. I hope to be able to return to work once he is situated.
CO2 this sounds promising, and how nice the kids go more! Sending out lots of prayer and hope that the Medicaid comes through soon. Having just been through all that 7 months ago, I can truly say I know how you feel. I am of course saddened by it all, but, know what was done was the best (like you) So where can we really go from here but acceptance, if we want to have any kind of life again. I too am slowly trying to get back to work, after almost a year absence.
Well it is almost a month since placement. I got the Medicaid thing going--I have to believe the Good Lord will take of that for me. He is currently on nebulizer for his COPD and now I notice tremors. Does anyone know what causes tremors? Because of this, he is having problems eating and holding the utensils. My son thinks it may be the medicine in the nebulizer that is causing the tremors. Anyway today was a better day than yesterday. I do notice I feel better after I visit. Tonight I sat with him while he ate dinner and that was good. It is still difficult for me to go as I see he has declined since placement. His gait is not as steady and he seems to be plagued with hot and cold issues, headaches, and now the COPD flare. He lost his glasses yesterday but fortunately found them tonight. He still knows me. I met with the lady at the Alz association today for about an hour. She says the length of time they live has a lot to do with their physical health. My husband's physical health is not good so I guess we will see. I feel at times like I betrayed him by placing him but when I consider the big picture I know I did the right thing. It is just hard.
My husband was diagnosed in 2008 with MCI and in 2010 with probable dementia of the Alzheimer's type. I would have said he had dementia at the time he was diagnosed with MCI, but he's very intelligent and was able to cover well. In 2011, we moved into an Independent Living apartment in a continuing care retirement community that I think is similar to where Marsh now lives. In addition to Independent Living there is a regular ALF and a dementia-specific ALF. There are plans for a skilled nursing unit to be build by early 2015.
Yesterday, I moved DH to the memory-specific ALF. Compared to what most of you have gone through, it was unbelievably easy. Last Friday, when I found out that there was a room open, I talked to the director of nursing. It's been obvious to all of the staff here how much he's declined recently and how stressed I am, so we made an appointment for both of us to talk to her this past Monday. She did some testing and had a general discussion with DH about his capability to live on his own and how much assistance he needed for a list of specific activities. She then told him the testing showed that, if I could no longer take care of him, he would be safest if he lived in the memory-specific ALF. Then she talked about caregiver stress and the impact of caregiving on the health of the caregiver. He seemed surprised that I was feeling stress (imagine!). The nurse then asked if he would like to see a room. He said he would, we did a tour, and he said he'd like to live there. This all happened on Monday; he moved on Thursday. Of course, the speed was possible because we already lived in the community, which put us ahead of those from outside for any vacant room. There is a waiting list.
He's happy. He says he likes it there and they take good care of him. It's all great. In fact, one of the staff members told me today that he's acting like a kid going of the college on his own for the first time. So, naturally, I'm having second thoughts. I keep thinking he's not really bad enough to be there, he seems more "with it" than the other residents, maybe I made a mistake. I went to eat with him tonight, and he wanted me to stay and watch television with him. I am exhausted mostly because of taking care of him all this time and partly because of all I had to do given the rush of getting him moved. I was so tired, that I was shaking, but I felt really bad leaving. How crazy is that?
Janet, I totally understand what you are going through. I too thought maybe my husband was "too good" to be admitted but I was emotionally exhausted from it all. My placement took longer than yours because we have a condo and he lived there and not in in independent living facility and because I am applying for Medicaid we had to wait 8 months for a bed. He too wants me there all the time. When I go he says where have you been. Even if I was there the day before he does not remember that I was there. You have the advantage of him living very near you whereas I have a 15 minute drive which is not bad but till I drive there and back and stay it is 2 hours' time. My husband too was very intelligent and could mask a lot of the symptoms but now the physical symptoms are beginning to show. He had a COPD flare and is plagued with headaches and now has a tremor which makes it difficult to eat. He has only been in for a month and I am still trying to decide how often to go. My children are visiting so on the days they go I try not to go. When I am there I still find myself helping him do stuff just like I did at home. He does not engage well in their activities so we are trying different things to see what works. Once I get on Medicaid I will have access to social work and more comprehensive nursing so I think it will get better. That should be by November 1. I think the thing for me was the beginning of toileting issues. He sometimes did not remember how to wipe himself and had to be prompted on that. You are doing a great job and we each have to do what is best for them and us. We cannot save them but we can save ourselves. The other thing I am finding is that placing him does not end the nightmare. I think my role now is more of an advocate rather than 24/7 caregiver. Would be happy to chat more if you want to exchange emails or phone numbers.