I woke up to terrified screaming and yelling last night. He had none of the terrible nightmares in residence but here he has them and they are so hard on him. He laid his head on my chest after I was able to calm him and get him to realize where he was and that he was safe and just wanted to know why it was happening again here as he thought they were gone as they didn't happen there. It is so sad to see him and feel the frustration in his voice. He has said that he feels that the depression he was in is gone since he was in residence but I think he is just on a high and that will come back down soon. Yes your right it really hurts to be the only one that he hates to be around after 42 yrs of a very close loving relationship. We did everything together and teased and laughed until tears came, but now I feel it is very hard for him to be near me except there are times when he wants something that he will be cute and cuddly until he gets his way, otherwise he is distant and pushy and bossy. I really think it will be better when he is in residence and I am his care manager not care giver. He really resents that part of our lives. Anyone but no me!!
Jazzy can totally relate to me being the one he most focus his rages on plus my daughter and granddaughter....small and weak females. Let someone in authority nurse, doctor....then you get the meak, submissive person. Friends - joval, charming, one of the guys. Go fiqure but I'm at the end now. I just need him gone before the hate for him becomes so much I can't turn back.
Jazzy, I am so sorry the nightmares returned. How hard it all is on you.... ((hugs))
Amber, that was very honest. Sometimes we are asked when the right time to place is, I always answered 2 years before you realize you are completely burned out and your health has suffered greatly. After talking to some spouses who HAVE lost all love and empathy for their spouse, I also think it is just as important to place them if one has a build up of negative feelings for and towards their spouse. I hope placement happens quickly and goes smoothly.
Is being a care manager any easier then a caregiver? I mean once my DH is in LTC, will I still have all this stress and sleepless nights working about him, or does that settle down when he is cared for by others? I'm afraid it may not be any better, if you read my t about screaming and yelling today you will know why I ask. I thought he was being well cared for at Day a way but after today I am concerned.
Yes it is overall I think. You can sleep in peace, you have quiet in which to think, you can schedule things, and take the first steps in learning how to cope with separation and for the first time have real time to consider everything that has happened.
I came home in a state of shock. I hope always that the day I put my wife into a home remains the absolute worst day of my life. But it's better because I couldn't do it 24/7 anymore and now I've had some time to come around.
Jazzy, I placed my DH in memory care when he was becoming impossible to manage here at home. He was not calm or happy in our home anymore. He was beginning to have behavioral issues, eating issues, bad sundowning issues and - as always - was constantly trying to leave. He adjusted very quickly and easily and has had no agitation since he's been there, 7 weeks now. I am at peace because they take very good care of their residents and he feels safe and is calm and content. In addition to everything Wolf said above, I rest easier because they know what he needs and how to handle things that come up. Lately, his main 'issues' are that he's been wearing several layers of clothes and gets out of bed quite late in the day. They are very respectful of him and try to accommodate his individual needs. They do a very good job. I know that, as he progresses through this disease I will be able to lean on their expertise as I lean on the wisdom and experience of Joan's group. I send hugs your way and hope that a room becomes available for your DH very soon.
Thank you so much. I had visions of all kinds of running to do what ever he needs, calls at all times of the night and day because he was not settling in.
Jazzy as tough as it is in the beginning to actually have them leave their home, after I adjusted it seemed like the lights came on again. SLEEP! what a concept! Only having to bathe and feed myself, wow. Last night I brought him home for a few hours for the first time, he is so advanced I do not think he even knew. However, after less than 4 hours changing him, (accidents messy), watching to make sure he did not try to stand up, wiping his watery eyes, tweeked my back trying to adjust him in the wheelchair, well, I was so reminded why I COULD NOT DO IT ANYMORE. It is funny, how they have one "good day" and you think you can do it . NOT!
The main thing is to get a place that takes good care of our mates.
Ahhhh Coco, you are looking into my mind. Daily I have thoughts of wanting and needing to bring Lynn home with me. Most days I can shake it off. I repeat to myself daily, " I must love Lynn enough to do what is best for HIM"......This week has been so difficult for me in this respect. I have been sobbing and sobbing, I just want him home with me! I don't want to see him for only a few hours a day.
My sister who usually tries to use rational thoughts with me when I go on one of these rants actually got mad at me the other day. I was being relentless in my reasoning on how I could bring him home. How I COULD take care of him better. I guess I must have been talking about it too much, to the point that it upset her. She was pointblank and blunt with me in listing the facts to why I shouldn't bring him home, and why I had to place him in the first place.
She even told me I was being absolutely selfish. That Lynn is thriving there, he is happy and content and that it would be cruel to take him away from his comfort zone.
The emotional challenges and stresses are no longer there as he has declined so badly and there is zero aggression now. He is bed/chair bound so there would be no sleepless nights trying to keep him safe.
But as she pointed out, that doesn't change the fact that I am physically not able to move and care for him. With my head issues I can only lift about 20 lbs. I need more brain surgeries and I do know this. I know I have limits, and I remember all to well fighting and fighting to get even just 4 hours a week of help. I know with the cutbacks it is likely even worse now....
But that doesn't seem to stop the heart from aching with the desire to have Lynn with me... all day, all night.
I also know there is no way I could provide the level of care they do. Nor all the different therapies that are helping him so much. Nor the stimulation that he needs and craves. I know I couldn't even change him alone..... I KNOW this, but....
I also know that because I don't have the 24/7 stress of sole caregiving, that every day Lynn gets the absolute best of me. I am able to be more loving, more kind, more patient. Bring quality to his life, making him happy, bringing him some joy, is my one and only goal. Weighted down with the responsibilities of being his sole caregiver again would not afford me that luxury.
I will admit my thoughts are completely selfish. But it is a natural need, a basic need I believe, to want my husband home with me. It's been over 4 years, and still, there are times the pain is almost crippling. I miss having him with me at home so so much....
Aww Nikki..please, I know it has been four years so this is a different circumstance than us. But, I know, and I am sure you know deep inside, that though your heart thinks it would be good, you know, you cannot, absolutely do it. Remember how much different it was when you had to do these things , and it was too much.? And you say, he would not wake you up, but he would, and you would not get your rest. You can dream about taking him home, and how lovely to see him and have him all to yourself, but so sorry dear one it cannot be...it is so much more than you are remembering, even if Lynn is not as mobile. Nikki I was shocked at how hard it was to spend only 4 hours in our home with Dado. And he does not walk anymore either.
And so true that they have so much more stimulation where they are.
It was a lesson for me to see how far along he has gone. Way more than I thought. When I visit him I do not always see all the symptoms.
I really feel for you Nikki, and I think more and more I am becoming like you in my love and caregiving. For that, I am very grateful.
FIONA68, your experience is exactly what mine was. I noticed that you joined this group the day after my DH died. Sometimes we wonder how we ever made it through those difficult times before placement. I wish the best for you. You're still pretty young and have lots of life ahead of you.
I understand Nikki, I do. Today is my day, just got home from my visit and for the first time, as I sat with him, all the memories came flooding back, from his diagnosis and the deep pain that came from that. Also, the realization that I truly will be moving on, without him, he is not coming home. I am leaving for a trip for two weeks this Friday, just crying and crying thinking of not seeing him.
It's a day of tears here too. After my DH did so well at the ALF this past several weeks, I had to take him out of the facility for a dentist appt today. It was a lot for him and by the time we were on our way back, he was giving me the 'stink eye'. When we got back into the building, he started getting very insistent that we go home. After trying to distract/placate him, he grabbed my arm and said "aren't you LISTENING to me?". I just put my hand on his heart and said that were were going to live here for a month. they gave him some Haldol to calm him down a bit and I finally was able to leave. Ohh, the guilt and pain that just overwhelms you. I've got to say, if it wasn't for this site, I'd be blaming myself for the emotional state he is in. However, because of all of you, I know better and I'm able to talk myself 'off the ledge' so to speak. Still, it is a very sad day. PrisR, thanks for your note. This 'lots of life ahead" is exhausting and rather terrifying to think about. I just want to go hide somewhere so someone else can be the grownup for a while. But I keep reminding myself; one day at a time. Enjoy your trip, Coco.
I am sorry it was such a rough day. I had to deal with a lot of hostility on my husband's part. I was asked to leave the hospital and the rehab because he became so agitated at my presence. He would seem glad to see me initially but it wore off quickly.
I have pretty much always kept a small notebook when I am on my desktop to write things I want to keep in my head.
This was written or inspired by someone here, but I did not note who. "What in the world would have happened to (spouse), medically, legally, financially, if I had not been there for all those years!"
Sending best wishes out to you. For me, the emotional could be more exhausting than the physical.
Fiona I am so sorry for the continuing sadness, and hope that in a short time he will get used to this place. It was SO HARD for us too in the first month, Dado would yell and yell when I left, and he would sense it and work himself up to it, get very agitated. It almost felt like the caregivers did not like me to visit because of this!
Now....it happens only rarely. I hope they can give your dh lots of love there it is what they need. And WE, give you the lots of love YOU need.
This is the ninth time I am trying to write this post. I think it's because of the mixed feelings about talking about this kind of thought on the board and because I have to admit I change my state where the rope that has held me is no longer my life. But it may also provide hope and at the least it marks the end of my journey here.
I have finished grieving. I can't think of a clearer way of putting it. My Dianne is still here hanging on like the trooper she is, but I have let go and am moving on.
On January 28, 2012 I put my soulmate into a nursing home finally and came home alone. On April 18 I started this thread with the explicit intention of actively walking out of this valley of death and into a different 'valley'. I've re-read all the posts and while it's a mess, it is an accurate representation of what I was doing.
I have never been an adult alone. I married as a teenager. When I came home and began to comprehend my condition I knew I was in serious trouble. I had lost years of my life, I had never caught up with the lineup of bad things happening, I was in shock, I had depression, I was suicidal, in this state I began grieving. I diagnosed myself, needed a doctor and didn't have one not pushing a new addiction.
Some might try and cope in this situation. I tore the building down and went to school. As anyone who has glanced through my posts knows, I became my own friend, psychiatrist, confidant, and got up every single morning and spent every single day like that. When I couldn't I gave myself permission not to; but there was only one road and no other.
Summarize what you mean Wolf. I healed myself. I didn't remember things; I rotated every one of them. I helped myself see which ones made me cringe and made me angry and tried to manage my way through believing with every ounce that either I fight this battle and kill it or it will drag on me and damage me the rest of my life. Which is I understand things as they really are and no other thing will do.
I had to untangle my lifelong predispositions. I've always hated that it was hopeless from the start and I was powerless to make it change. I had to admit part of my feelings are about that. I admitted my anger that this would happen to ME. If I didn't I couldn't touch the centers and reach the truths. I admitted I was desperate for a woman/ a companion. That I was so lonely I could scream. Notice nothing so far is about her.
I admitted I wasn't just scared, I was terrified. That was me that night that sat there feeling as unconnected to anything as a rock drifting alone in deep space where I could feel nothing whatsoever and didn't care. That was me that kept thinking about the bullet for months when I shampooed my hair. I had my father's guns and had checked inside the stocks and so unlike my father, there was one bullet. I shouldn't have and didn't need anyone to tell me how seriously damaged my emotional/mental condition had deteriorated to. How many times did I look into the mirror shocked that I had four days growth on my face and realize I hadn't any real conception of the time that was passing?
In July last year I went to my friend's cottage and in one moment realized I felt like myself and I recall saying out loud "so you're still here". It was a revelation because being in that lifelong familiar place having that moment, I knew. It showed me that I was still a distance from being normal.
It was so clear what was happening and Carol and I talked about this. I had split off to protect and in the early months after shock I was either in the moment without awareness about her, or I was thinking about her and in a bad state. There are so many clear milestones now looking backwards along the road I've come. The good memories starting to return and starting to be enjoyed. Thoughts of looking at things from other points of view. Months of mostly quiet where I could control the events and hating every time the ringing phone was showing "Westmount NH".
I think the biggest threat to healing is the short shrift spouses give to the existence and seriousness of their own state. I've talked about the shortcomings of our societies and my belief these areas will in time improve. But while they might help us, the brunt of the work is mental acceptance and emotional adjustment which only we can do unless we get professional help.
I don't want to remarry. I want to enjoy being absorbed in my life and I have released myself from the convalescent home where I have felt extremely normal continuously for over a month now. I also know I will continue to get better at this and I do have a variety of challenges still none of which involve Dianne. I've come a long way and there is still a distance to go but I can think through the burial decisions I have made on her behalf and not lose my place here in what I'm saying.
The truth is we both want the survivor to be as happy as possible and I am. I'm happy to be here. My future is my own. And I have no regrets that I have accepted our misfortunes, and her early demise by this awful disease, or that I look forward to things such as the cottage I'm going to this weekend, that I took the lead in organizing the food this time, that I will be taking my recent cancer survivor friend and need to watch her because it's all still raw for her, or that Dianne will be in such a condition while I'm out swimming and chatting. She is. It's no one's fault. I give freely whatever it cost me on her behalf.
The difference is astonishing. It's defined more by what is absent than what is present. I'm not suddenly happy and I do shed tears and miss her and have moments I feel lost and so on. What's missing is the power. I already know all these things and I know what I think about them and that I've gone through them and that I've resolved them or accepted them and I don't mean to be flippant but just like high school ended one day, so has this fabulous thing we had for so long. It's all parts of the story and that has always been true. What changed was us and that has cost her everything and did clinical things to me.
My poor sister may never get over mum passing. She was shocked recently when I pointed at the windowsill just feet away where her ashes sit. She knew very well where mom is but had once again changed it in her mind. I don't recommend that as healthy but until we listen we don't.
I don't believe in the magic of time. All accomplishment has come from rolling up my sleeves and getting at it. This time it was very hard and I'm happy to say the child I dragged out has melted back, and the committee of voices has returned to silent and comfortable thought. There are no solutions; but, I'm no longer a patient and what I do have for well over a month now is an even keel and that's all anybody has.
I'm not going anywhere. But I can answer a question. Can we feel like ourselves again afterwards? Yes we can.
Oh, Wolf, what an insightful post! I am so happy you are again feeling like yourself! You have battled and won! Arms around you as you continue to find more of yourself.
Well, Wolf...interesting description. As something of a literalist, I have a little trouble discerning the bones of exactly what you're saying sometimes, but it certainly captures the confusing, disorienting, emotional quagmire that is Alzheimer spousing. I've had to have some nice meaty discussions with myself about living my "double life," survivor's guilt, what constitutes honest-to-goodness "doing everything I can" for what's left of Jeff.
If there's one thing for certain, it's that this gig gives us plenty to sort through with ourselves.
You just keep hanging in there, Wolf. I often wonder what my life will be like once that room is available for Clare at Assisted Living sometime in the next few months. We all must deal with our futures in our own ways. Hopefully, however, each of us will be able to find a decent future for ourselves.
Wolf I follow all your posts and your journey. Glad to hear you have some joyful days.
acvann I remember first joining this year and seeing lots of similarities in our stories. You have done everything you could oto give your wife's life quality . Now I see you have had to reach the next step.
My DH has gone downhill quickly in the last year. I read these posts because I guess I am fearful of the future and wonder how I will get through it! You men give me strength.
My therapist said something this week that is resonating with me. I worked as a teacher until retiring at 55 to enjoy Our retirement. Now this disease has destroyed it all. She told me to think about the value of my own life . Something Ii've never done( always second to children, parents, first husband and now second husband.
How will I handle this challenge while valuing my own life? Thanks for your examples.
Wolf, I am glad you have found your own truths and your way back to you. I have true happiness and have found my way back to me as well, but I am not done grieving. Not by a long shot.
Emily, I agree, we do indeed delve into the inner depths of ourselves don't we!
Fiona, I was sorry to hear you had such a difficult day. I hope things have smoothed back out and that your DH is back to being content. Perhaps it would be best to delay any further trips out until he has fully transitioned. ((hugs))
Coco, I know you will miss Dado deeply..... still, I hope you can enjoy your much needed vacation secure in the knowledge that he is being well cared for. Have a wonderful time! ☼
Wolf, did you have nobody but you to talk to when you were looking at that bullet? That makes me sad. I am glad that you made the choice you did.
I think we can find ourselves again but I think it is a different self. I don't think we can go through all that we do without changing in major ways. I still wake at 4 or 5 in the morning with some nameless terror. With time and my walk, it usually goes back into hiding. It doesn't visit me as frequently as it once did.
Take care of yourself, Wolf. I don't know what we would do without you and Nikki.
Just put a deposit down at Sunrise for L. This was her visit and thankfully a sister came with us. L will be able to go outside on her own, she is capable of that for now. Very excited that a movie theater that has been converted to a rock music venue is just down the street.
As I posted on the main thread....packing for placement. What out of the ordinary did you find they needed that you hadn't thought of. Facility is 1000 km return away from where we live and I would like to get most everything covered on the first trip. Now much clothes did you find they were able to fit in their room.... I'll have to purchase a recliner for him and TV but no phone...he will call me every night and will continue to call until I answer. I checked out their web site...George Derby Center in Burnaby BC and I also talked to a nurse that used to work there. She said it is really nice with a mini mall there. I sure hope it is a good fit for him. Now just waiting for the phone call. Thanks for your input.
Amber, I think that if you cover his basic personal grooming needs, that most places that I know of here in Vancouver have surplus clothing they use for their patients who may have forgotten anything. For Eric, I packed his razor, toothbrush, toothpaste, dental floss, Stimudents, soap, deodorant, emory boards for nails,nail brush, hair brush, comb, Kleenex, bedside radio and clock combination, 6 pairs of underwear, 6 nightshirts, 4 pairs of pants (different weights), 4 tops: shirts or T shirts, 2 cardigan sweaters, 8 pairs of socks (they tend to disappear), raincoat and Tilley hat, 2 jackets (one warm, one light) writing material (pens, pencils, erasers, notebooks, writing paper, his address book with most used phone numbers), wallet with about $60.00 in it and a few cheques, 3-4 chocolate bars or other snacks, his MasterCard, ID cards, a couple of his favourite books of essays or humour, a few family photos, a calendar, a light throw for his bed.
Oohhh you have no idea how thrilled I am to find this thread today!! I have been following Joan's fabulous blog for well over a year and had no idea this thread existed. I have been searching everywhere for some kind of discussion for exactly what is taking place here.
My husband went into care in February of 2012. I still struggle with many things and Wolf you could have been writing my story. I spent 3 hours this morning going through many of the posts and for the first time in a long time have some hope that indeed I will figure it out what it means to get on with life. To feel more than uncertain and to stop looking through a "hazy" lens is most welcome.
Thank you to everyone for your heartfelt sharing. I will come back to this thread numerous times.
"As something of a literalist, I have a little trouble discerning the bones of exactly what you're saying sometimes".
A literalist is someone who takes things literally as they're said. I presume this is what you mean since you've made comments such as this to me three times now on this board.
If there is something in my post above you are having trouble following, I will be very happy to explain further.
Katherine, I'm glad my story sounds familiar. I think even though we're all quite different there is a common thread that we would all like to do more than cope.
Jang, yes I was alone then. It was a strange time.
No Wolf...it is not important that I fully understand the narrative! (I've done that THREE times? I am a nuisance, aren't I?) I would say you speak in imagery often, and sometimes, attempting to read between the lines, I THINK I discern something such as a date, or a traveling companion, but I'm not quite sure. So yes, I'm silly. I'm trying to take a thoughtful expression of ideas and feelings and distill it into "I did this, and then I did this..." It's not necessary at all. Don't worry about it. I have a short attention span.
I had a major episode today. For the last three days the gloom and sighing have been very heavy and I want to face this so I began asking myself out loud what was really going on.
I began down that road reminding myself what had all happened and I've had these rhythms many times before where I described it best to a friend that most of the storms were clearly behind me but of course not all of them. I wrote down yesterday a short list of what had happened in each of the last nine years where on one piece of paper it's so clear how long and deteriorating this story actually is.
Then earlier today feeling the oppression strongly, I started talking to myself out loud saying I wanted to work at this and I wasn't going out enough (at all) and right there it was like a lid blew off interrupting and I heard myself starting to wail that I was really sorry and choking and gasping I confessed how horrible I felt about what happened between us nine years ago.
I had written it on the first line of that piece of paper. The story in a nutshell is that my wife clearly did something and wouldn't own up to it and I ragged on her because of it. And earlier today I watched myself break down more emotionally than I can ever remember (I still feel stunned by the intensity) literally pleading that if there was one thing in my life I wanted to take back it was that. Sobbing and choking asking why I could never catch on that something else was wrong instead of arguing with her and wasting that precious time.
I don't tell this story in such detail to relate the story. It proves what I've said over and over. We have to heal ourselves and I believe that if I hadn't needled myself into it, I might not have had this breakthrough.
That breakthrough is that unknown to my concious mind I was harboring a large amount of guilt which I had transfered from my helplessness where I couldn't be guilty to a place where I could be guilty even though it's nine years back. The truth is my wife worked two years after that at a demanding job and her responsbility was not zero, while a greater truth is that this disease was at us even back then.
When I learned she had real problems and then we were diagnosed, I let that go, or so I thought until I found out differently today. I hadn't let it go. I had transformed it.
I gave up years of my life for her until she couldn't say a single word. That counted for nothing inside me.
I'm the patient, the doctor, the floor sweeper, and the only one in the asylum and I'm saving a bloody fortune in psychiatry bills. Hey, it's just as crazy as blaming yourself secretly for everything by having an argument nine years ago. However, I now have a real and live example of what I mean by 'clinical damage' and I don't need a psychiatrist to tell me the boiler that was under pressure exploded and isn't likely to again because you can see the holes in it now or that he/she might call that 'displacing'.
Today I had a complete meltdown and learned that I'm retarded. Part of the Hoover Dam of feelings was bogus displaced guilt - not actually an expression of my feelings but just collateral damage from the disease. I'm probably the only one.
Wow Wolf, never has one of your posts had this kind of an impact on me. When I log on here it is this thread that I look to first. Not because I don't think the other threads are as important, but because it is in this thread that truths are spoken about the hell of placement and the crippling loneliness and intense mourning that follows. This is what I relate to most now and here is where I feel understood.
I saw your name and thought good Wolf had a breakthrough! I expected a post on trying to find our way back to real happiness... and instead got blindsided by such raw emotion that it caused my eyes to tear up.
Thank you for having the courage to share this here with us. I believe you are right, there is no one else who can heal us, for the simple reason one just can not understand it unless they have lived it (I don't care what degree they have) we have to work our way through the mountainous emotions ourselves, in our own time.
There is one thing I would like to kindly 'caution' you about..."I don't need a psychiatrist to tell me the boiler that was under pressure exploded and isn't likely to again because you can see the holes in it now.." It is just my opinion based on my own experience, I broke more than once, but not to the degree as the first time, and if those hole stay there largely depends on you Wolf... meaning they can easily fill back in if we try to bury/displace future emotions.
So often I have heard that strength is about bending but not breaking. (you know like the tree in a storm) I disagree. I think only allowing yourself to the point of bending is where the displacing (or burying) of our emotions come into play. I have said so often here that placing Lynn wasn't just heartbreaking, it was "Nikki breaking". I have no shame at all in admitting that after years of fighting this damn war, not being able to attend to the wounds it inflicted, that I simply and completely broke.
It took much more strength for me to allow myself to go that far with my feelings and I am assuming it was this way for you too. As much as I can guess how extremely painful this was for you, it makes me happy for you that you experienced it. I say this because once you let yourself go that far, new strengths are gained. I now have a strength I never dreamed possible. With conviction I can say that Alzheimer's has ripped all it can from me.
You know all the time I hear this is a war we can't win. I feel differently. As with every war there will be casualties.... I know that I will lose Lynn. But to my thinking that doesn't mean we lost this war. I was able to go through every stage/battle of this war and I have come out on the other side holding onto our love strong and proud. It tried, but it could not claim the most treasured thing from us. To me that is a victory!
And lastly Wolf, I cowardly say, I am glad I didn't have to look at your list............. ((hugs))
Nikki, I agree with your caution but it will move now and is unlikely to repeat the same form with me. I agree we can win. In fact I know for certain that's true. I also don't believe in bend but don't break. There are times like as a parent or career. But not here. I believe shattering and reforming is instructive and I feel no shame when I beg and cling on my knees or sob so hard I fear for my breathing. Realizing you just get up again is part of the strength you speak of I believe.
I hope the rawness of my experience isn't too strong. I think it's critical to lay bare truth and having prattled on so long about 'clinical disease damage', there is what I mean by that.
I said three years ago I mean to survive this disease with the integrity of what we were in tact. I had no real idea what any of that meant when I said it. I believe it may mean my idea of what 'integrity intact' means.
It's here some time ago I used the expression 'get past' which you and I discussed back then. That does sound like 'away from' or 'push away'. What I'm looking for is an expression that captures the integrity of what we were, the memories which are the recording of that in our mind, and getting past how the disease changed those things. It's actually the disease I want to get past. I want to feel like me and I want to remember her well. My memories of us are the living thread of her existence in the future.
I mean to live this epilogue I've been given well. I have never experienced such powerful things as these in my life nor have we ever paid such a terrible price. Having seen that I had the strength to stand with her, I can't come away a wraith without having made myself a victim and I can't snap my fingers or form a conviction to solve this. I have no choice but the one I've made and I've been on this road long enough to see it takes me somewhere.
I'm want to convey to you something about fear. I've decided to split this into your positive thought thread.
I never tried to "get past" our trip through Dementia land. I strove to "get through" it intact. As you said Wolf, "getting past" connotes getting away from, pushing away, perhaps even escaping or denying. I was sad/glad when it was done, but not that I went through it. Our experiences temper us; help shape us. They can provide building blocks for us to utilize as we continue. I think this is the one instance when we can value the message received, while wishing the messenger dead and gone I have always maintained that when our LO passes we win. We make it so our spouse passes with dignity wrapped in love. On top of that we come away stronger, more knowledgeable, and compassionate. I have only the regret that our time together was shortened, never that we experienced what we did.
I'm not sure if this is the correct thread to ask a question about placement. So feel free to move it. My husband has EOAD and will be placed sometime in the next few months. He is still quite active and walks outside a lot and paces in the house. He seems to become claustrophobic in the house and claims that it is not his home and he wants to "get out of this place." That said, he isn't a wanderer - just antsy. He needs to be around and helping other people all the time. So I am asking those of you with ALF experience if most facilities keep these younger folks busy and if they get enough exercise to keep from going bonkers.
Hi marche, My husband had been a competitive runner his whole life (even sponsored by New Balance for several years)..and when he was well had a hard time sitting around. Anyways, when we placed John...there was a long hall he would literally walk up and down all day. There also was a workout room in the facility that the staff took him once or twice. The long hall seemed to please him...they just let him walk to his content. As he began to decline he would grab anyone's hand to walk with him. He was the only resident at that time that did all the walking. Tough stuff for sure. Hang in there. Love, Leigh*
Some places do have younger residents. My wife will be moving into one with 3 people in their 50s. As long as it is safe she will be allowed outside on her own (she is agreeing to this move) and they have a nice park that is adjacent to the facility. L thinks she will do a lot of walking. Some facilities are designed to allow for lots of roaming inside and some have lots of space outside for walking (fenced in of course). Also ask if they have people who wander, some places have no problem with this behavior, others do.
I remember on place that said there is lots of hallway in a U shape but I knew my wife would find it claustrophobic. I feel that one story facilities are designed better for walking/wandering.
My ALF experience with my husband was challenging. It turned out that he needed placement at least a year before it was anticipated. Also, this was with about 2 weeks notice. One challenge was that I found it was common to have 2 separate tiers of billing. One was for accommodation and the other for care. It was that second tier that was cringe worthy for me.
More specific to what has been mentioned here, I found that many ALF's would not accept someone younger than 60; others would not accept younger than 55. Since my husband was younger than 55 and this happened on such short notice it was quite a challenge to say the least.
If I knew then what I know now I would have made different choices, but of course, I didn't.
marche--one of my big concerns about placing Steve was his age and excellent physical condition. At home, he was a pacer, but not a wanderer. He was 66 when I placed him 2 years ago, and he adapted immediately. It is a dementia-specific ALF (Arden Courts) and the design of all their facilities is identical, I believe. There is a central hallway that is rectangularly-shaped to accommodate pacing. The route includes a view of the outdoors, the nurses' office, the activity room, display cases, areas with chairs and sofas, a fish tank, and various games. Much to my surprise, I quickly saw that this design was much better for Steve's pacing than our home, which has a sunken family room and sun room on the first floor, where he paced. So at home, he was much more limited in pacing square footage and in exposure to other people and activities.
His relative youth has posed absolutely no problems. Yes, he has been able to pace to his heart's content (he has slowed down and sits a lot more now, due to the disease progression). So the bottom line is, based on my experience, a person with younger-onset dementia can be placed successfully. (I must add, his dx is AD--he isn't as challenging as someone of the same age with FTD, for example.)
I agree Arden Courts is great for pacing. Lots of room inside, all one floor, fenced area outside that runs around most of the building. L is too highly functional for their facilities.
I reread your post from four days ago in response to my relating that meltdown I had and I would like to say something to you.
I believe purity of spirit and integrity in honesty are essential mechanical tools for anyone to understand. I don't say 'purity of spirit' in a religious context and I don't say 'integrity of honesty' in a character context.
I might be able to save a lot of time by using Lance Armstrong as an example. He cheated in his sport and was stripped of his honors after denying for a long time he was taking banned drugs. He was however pure in his spirit and had integrity in his honesty.
No one can make choices for us. They might insist; but only you can decide to submit.
And no one can claim, though many religious wars have been fought over this very thing, that purity of spirit for you is exactly what they dictate. Integrity of honesty is what I call tracking your own bullsh*t. Armstrong was straight as an arrow in his own BS.
Why is this important? Because I love her and I always will. And I will find ways to get healthy and more vibrant to keep that love going. That's not an abstract statement. She lives inside me in the truth of all the moments that actually did happen and truly are half the formation of what I am and what I think.
I see the sun streaming in the window saturating the vegetables I'm cutting into vibrant colors and know she would have passed through a few times glancing and smiling at what I'm cooking for us. Now I cook for me but everything else is the same. The pots, the knives, me, the sun, good food. They are all the same as they were before. Our bedsheets, her dresser, the decorations, her handwriting in the phonebook she made of all our important contacts. I'm not making a shrine. These are just facts.
You see I think long before acceptance there is a choice which I would call purity of spirit. Do I know what I think? Or am I struggling in a pool? I was lost in that pool but in time have stood up to answer the question. What do I think? I'm not going to escape the pain but I choose joy over bitterness. I try to deal with the hurting but I'm not confused anymore. I believe there is a choice in the soul and I've made it. I feel the bitterness, the hurt and all those other things but I don't choose them. I choose the love. That includes the love of life we both cherished.
Now the only thing is how is my integrity to that honesty?
The heaviest weight in my heart for so many of the people I meet is how they seem to dance so unaware in the struggle between what they want and don't want to let themselves know. I think it's one of the primary struggles in life to be honest with ourselves.
Everyone has been in a situation where they have had strong feelings about something and then one more fact changed everything and knowing that fact we suddenly don't have the strong feeling. Facts aren't the problem. We are.
I can't explain how rich my life has felt. I can't explain how hard this is for us. I now choose which of those two defines my future.
Hi Wolf, sorry I am so long in replying, I had an exceptional week with Lynn and family, time got away from me....
"Because I love her and I always will........ She lives inside me in the truth of all the moments that actually did happen and truly are half the formation of what I am and what I think"
"What do I think? I'm not going to escape the pain but I choose joy over bitterness. I try to deal with the hurting but I'm not confused anymore. I believe there is a choice in the soul and I've made it. I feel the bitterness, the hurt and all those other things but I don't choose them. I choose the love. That includes the love of life we both cherished."
Beautiful Wolf. I choose the love too. I wont deny the pain we have felt, the hell we have been through, that would be to pretend I wasn't changed by this ordeal. But like you, I have chosen to not be consumed by it, or let it define who I am.
I will love Lynn for the rest of my life, it really is that simple.
Officially a member of this group. L moved into an ALF yesterday. She has been assessed as Independent, which means that care charges and she may walk outside the building. She had a nice walk today, probably much farther than the average resident. She enjoyed being able to get outside and I am comfortable with it since she isn't trying to get home.
My son remarked that he woke up this morning and heard silence. What a change. For both of us it means no longer walking on eggshells. He even joined me on a grocery trip, something he has not done for a long time. We are not making major changes to our lives, but much of our "normal" routine is going out the door. I think it is good that we have a month of adjustment before school starts again.
I find that I am much more relaxed and affectionate and patient with L. Visited this morning to hang up more pictures and show her how to watch recorded TV shows. Rushed back just now to help with a TV problem. I was much more relaxed about it than last week. Not dealing with minute-by-minute care makes a big difference to me. Still, 21 calls so far today.
Yesterday was moving day and SIL and her husband and son helped (SIL helped for 2 days in a row). Getting everything set up took longer than I expected. When assessment decided that she could take her own meds, I still set up the pill box, I had to go out and get a new pill box and a lock box for it, and set up the pills. Even if just for a week, this is important because if the ALF gave her her meds, she could only have meds on the doctor's approved list, and that does not include any OTC meds. I have to fix that tomorrow so when she needs more help with meds she can get what she needs.
Her current complaints are loneliness (expected), only seeing old people (there are 3 other people in their 50s at the ALF, she isn't eating meals at the right time to meet them). She should meet someone on Monday, I expect the activities director to meet with her tomorrow.