Yes, there should be "labor laws" re family caregiving!!! Regularly scheduled breaks, days off, vacations, etc. Maybe some government support and regulation in this area wouldn't be a bad thing.
One of the few things I never told my wife was that for decades my first love in early highschool haunted my dreams. She was often on a bus or something where I caught a glimpse of her and wanted to run and find her but I never could. She dumped me and became prom queen. A few years ago I met a couple of friends downtown from highschool and we caught up and I asked about her. It turned out she had become very fat and had let herself go. And hey presto! no more chasing Joanne in my dreams. Part of me had been hanging on to an earlier time which I loved and wouldn't let go; but, when reality hit me in the face my mind wasn't interested enough to do the extra work to keep ignoring that things change quite a bit as life goes on and I was then free of it.
I hadn't accepted what happened deep inside and so I clung to a memory that unconciously I kept polishing and polishing until reality was changed and I had 'locked in' (thanks Carol) my regret. Along the way I got rid of all the times that weren't that great and kept only a few icons of the best parts and trapped myself in regrets that in all honesty weren't actually real as presented.
If I didn't remember so many dreams I would have no concept that I was working hard in the underbrush of the mind to become mentally ill. And you have to go further to understand the mentally ill part because I did remember that she was there in the dreams for so long but I studiously avoided that. It was only when I noticed she wasn't anymore that my fixation became apparent because when I was told she was a mess now I felt a pang of regret and it was only later when I suddenly realized I hadn't chased her in a dream for months that the penny dropped.
I'm going to be terribly honest here in this particular rambling because there were times earlier in our marriage where I asked myself if I could have done better. That was somewhere in my late twenties or so where we had already been married ten years and I think I was going through a phase where I was succeeding in some things and was looking at myself differently and as part of that I was looking at Dianne and me differently. She was so dedicated to getting along that she at times threw principle out the window to achieve her comfort zone. Conflict was agonizing for her to the point where she would block from her mind who had done and said what so that the waters would calm never mind right and wrong.
Now I know that I have my own such issues which she in turn forgave. Actually I don't know that because very few people can see themselves objectively - but I accept it as truth. We were lucky to have each other for as long as we did and while she is still here, no psychiatrist worth their salt would agree that we still have each other today. They would be helping me prepare for the grieving which is around the corner and would be helping me to see that that is the only inevitable near term truth.
I am letting her go. I'm privileged to have known her so well and shared so much with her. That time has ended and while I watch over her I no longer think in terms of 'us'. I regret what is happening to her but I no longer regret she's not sitting there beside me. I'm not thinking about the future in terms of her not in it, I'm thinking about the real future with me in it. And I'm not trying to feel this way - I do feel this way.
I'm now in month eight alone. Her birthday was yesterday and she got a huge cake that all the patients and staff could share including the evening shift. Lots of smiles about that. I can see that I'm on the right road for me. No hurry, lots of honesty, and an understanding that this is the time in my life where I live what I believe in complete freedom as an individual and the central truth - this is the way it is and the way it should be; it just isn't the way I would have wanted it.
This last month has been hard. It all came down on me again how sorry I am for her, how much I've lost, how lonely it is. And while I don't have much choice, I allow that and warn the people around me that I'm in a hole right now because these feelings are also truths and I have no desire to deny that or get away from it.
I had a highschool sweetheart and it was good and then it ended. I had a career and it was good and then it ended. I had a lifelong soulmate and it was good and now it's ending. I am here and that is good and that is NOT ending.
I'm going to help my friends who are facing terminal cancer and as I told them on the phone when they are mad and have had it phone me and get it out. I can do that. I did my 44th thirty minute power walk this morning. I've decided to get the counter tops in the kitchen ripped out and I'm putting granite in. I don't care about that but I'm going to sell the house in about four years. I'm in the middle of getting the carpets taken out (doing that myself) and am polishing up the hardwood underneath that has never seen the light of day. I lost a ton on the stock market ten years ago and when I had Dianne with me still I decided to get that back and create a foundation with it. My cats are healthy and happy and my flowers are blooming because I'm caring for them. I'm reading again after many years and am enjoying that. I'm even letting x-friends be.
And the key is that I really do want my life and I'm actually working for it. I have no interest in avoiding the pain and I have no interest in having that pain move in permanently. The idea that we can't be happy again isn't going to sell in this house. And in my eighth month I can see clearly enough that while there is a long way to go and I will be down in a heap again, this truth is also real and I've decided what I want. To live my life fully regrets and all.
I came into this wanting to write a book about it and have learned that these experiences are the book that is writing me. We can teach an athlete who wants it and works at it how to get better, but we cannot teach how to want to be an athlete. And absorbing the Alzheimer's experience requires real athletic work in the body, the mind, and the soul. That's my opinion.
This topic isn't necessarily for people who still have their spouse at home. I say that because I was way too busy to have real thoughts about my future then and I didn't have the time most of which changes when we place them into a residence. You live alone, you cook for one, you sleep, you are no longer the primary caregiver, and you set your schedule once that happens. So I'm already in this reality where when I'm not visiting her or advocating for her, I'm pretty much here already.
A different analogy makes things easier. I had a great working career (in my own mind) and it has ended so I am getting involved in other things and I'm enjoying some of them just as much which doesn't denegrate that I had a great working career or that I miss it or that I sometimes wish I still had it. Or that there were great people there...and so on.
This morning I woke up from a dream because my cat jumped on me around 6am and in it I had been trying to get Dianne to come with me and someone said "she can't you know" and I was sobbing. More blubbering. I don't usually remember those because they're too close to home so it's similar to talking to people who hear something they didn't like or saw something they didn't want to and not only is the memory of that gone; but, they will get annoyed if you remind them. It's the hippo's fault. One of the jobs of the hippocampus is to filter and channel our concious thoughts for us (close enough) and this morning was one of those peeks under the curtain where in dreams I remember, Dianne has no speaking or energetic parts but she's there and kind of slides through the storyline with me. Losing your lifepartner is hard stuff and there's just no way around it.
But I decided to go on a second exercise walk for the first time because I have no life and my neighbour was out at the BBQ with another neighbour and they waved me over and there was no way out so I walked over to the lawnchairs and made some smalltalk.
An hour later we had run through global warming, your upcoming election, oil, Iran, and the Chinese. I had to turn down lamb chops and beer numerous times and as I finally went on that second walk I realized three things.
I'm right that you gotta get out there if you want to live no matter what you feel inside. I'm right that when I do step out life is always there waiting for me. I miss you real bad kiddo.
It looks like I'm entering my drinking period. I haven't bought beer in over six years and then it was always to entertain and then be thrown out from the back of the fridge. And even though these trolls I live among are completely bizarre, I should fit right in. I can always reschedule my self loathing or my low self esteem appointments. Well, they're not appointments. More like awful in laws trying to move into the basement.
And while Carosi2 (that really has a ring to it there Carol) and I just discussed, there are always silver linings even in the darkest strom. The evil SIL's have left the building.
Marilyn, I have no life or personality to speak of. My social skills have poured out through my shoes and ran into the cracks in the floor. "Run away! Run away!" they squeaked in their tiny little voices. I've rented out my sanity which had stood empty for months anyway. I was going to mention my enthusiasm but it just harumphed and stormed out of the room in a snit. There's a sign on my closet door with a big arrow on it that says "your head here" and the most reliable interaction I have is when I'm sitting on the throne reading the paper and look up into the mirror to make some know-it-all comment and even my reflection says "you should get out more. Or once even." My reflection is Woody Allen's mother.
But none of those are the reasons I turned down the lamb chops. I had picked up some authentic chinese food the day before and I get enough for 2 days. But if you don't nuke that the next day I would tend to throw it out and I hate throwing out food.
So, it was sesame chicken in the chef's special sauce, chicken with black bean sauce, curried beef, and kung po shrimp with the spiced cabbage all on steamed rice reheated - or two (count them again) BBQ'd lamb chops. He offered veggies too. I don't know. I don't know. Ummm no.
Wolf--you may not have a life, but you do have a unique personality that comes out through your writing. It's so interesting to see the different ways people react to their spouses' illnesses. Now that Steve is living at the ALF and is content, I feel like a bird let out of a cage. I know that the plateau he's been on will end, and I'll be back to grieving, but I'm making the most of the time until it does.
That's good. In all seriousness there's no denying the realities of dementia and what it has done to us by the time our spouses are released from it.
It is in fact at that point a noxious cocktail of competing serious things.
1. It's a long series of brutal experiences that get worse and worse with neither let up or hope. That's serious because it wears your spirit and will down in clinical ways.
2. We are necessarily lost because there was never time to assimilate or heal. The body and mind needs time when experiences are so powerful and it's five years later in worse circumstances and we still haven't taken in how painful it was that they couldn't dial the phone anymore. That's serious buildup in the psyche.
3. We finally look up after being so stretched many of us welcome their passing from this horror (which is all by itself a strange place to be pushed into) and see that we have not been ourselves for years, we don't recognize ourselves, we are now alone, and we have a mountain of bad experiences to start to try to assimilate.
It can't be any suprise that so few people find their vitality and laughter again while too many take a long time through that mess to just come to some state of resignation.
Say things often enough and people numb to it. Get kicked down often enough and many just stay down. Be in a state of dismal futility long enough and we believe it.
This is the rock bottom truth as I see it.
It's me or Alzheimer's. My wife is done and I stand/stood by her. What has happened to me is such a noxious cocktail of numerous of the worst things that can happen to anyone in life (see above) that I am in the fight of my life whatever junk may be going through my head.
I am an extremely focused individual whatever I sound like. I look into the blood and entrails long after everybody else has left. If you are an alzheimer's spouse your sanity is under assault whatever defenses you have up to shield your mind from it. Forget depression (which is serious) because the person that went into this is not the person coming out in fundamental psychological ways.
You're going to be alright I think. And so am I. I can hear it in you but I can't speak to why. I can however say why I will. I understand that talk of finding someone is a joke. Not because I can't attract women. But because the idea that I have a useful/normal set of emotions is ridiculous. I'll be alright because I'm letting her go. I will always love and respect her but she's moving into the past.
I'm on a road and nothing is anywhere near as important as that I go down it. To find my emotions, my laughter, the things I value, involvement, consideration, honesty first to myself then to others, and love. What do I love? Many, many things. And that is where my mind is. And the entire time the focus is on me. The most common things I say to myself among the hundreds of things I talk about with myself is "You don't have to Wolf."
It's not a philosophy, or a belief, or conviction, or any other function. It's me, here, now, understanding that stripped of all the garbage I've never been in a more serious battle against such a stacked deck.
And what is this garbage/battle/thing? To be emotionally balanced that the story in the book wasn't Wolf&Dianne; it's about Wolf and just like my parents, Dianne was chapters in that.
Silly as it may sound the battle is to make a shrine to loss or learn to feel good again. And I haven't even lost her yet, or have I? Nevertheless, like Bilbo Baggins, I am already on that road.
Where does dynamic change and some opportunity meet the oppressed and unwilling?
Most of our experience is that for normal people that don't have huge tragic events they're trying to survive, normal people are full of boundless energy and grasp every opportunity to improve their lives.
Or have I got that wrong? Are 'normal' people almost completely absorbed in their own problems and perceptions and seem to be almost as mired in their lives as people with 'real' challenges?
Does comparison actually matter? It does for me. One of my nieces who has been suffering privately and apparently greatly that her favourite aunt got sick is coming to see her five years later and for the first and I presume possibly last time. Good.
And the wife of my best friend has retired from her lifelong teaching job at 60 and has celebrated by pulling her hair out from stress. She has an almost bald spot several inches wide from unconciously picking out one hair at a time. Wow.
My neighbour is 47. He takes care of his mother who has dementia. He gets quite angry at politics and world events although he will give you the shirt off his back. He seems to have given up on finding a good woman to share his life with. And while he's a good person, it seems he expects her to show up wandering around the backyard.
And while the retired professor across the street likes to race his power chair around the court chatting and my Jamaican neighbour is always outside tending his beautiful garden, the cross section of the hundred people or so that I have at least semi-regular contact with shows me that pretty much everybody is up to their neck in their own life whatever that seems to or does add up to.
What I see is opportunity mixed with unwillingess. We all can say you should get out more or that you should open to something new or get involved. But when the tools in the kit bag are mostly negatives such as saddness, stress, depression, loneliness, and so on, there is a frequent gap between the concepts of what could be done and the historic facts of what occurred.
It is so clear to me that the battles are getting out and taking steps to accepting and getting involved; but, the war itself is willingness to feel good inside.
This thread on review at this time is dominated by wolf's journey because in these months I'm mostly the one using it. I hope in any following years that's useful to someone. I know the battleground well now though not as well as I will. Everything channels into the truth that what we work on is what tends to happen and what we don't is left to chance. This time isn't so much a purgatory as a proving ground. They need our help still but we are here now in what it will be like.
The fight is to feel good inside. That's for everybody in every circumstance. Focus on that in truth and change follows. All other discussion is ancilliary to that. All definition as to what that may be is wide open and is different in it's blends and flavours for every person which doesn't matter at all because it's one on one in every circumstance.
If you don't want to feel good inside then reading this is a waste of time and if you do then you're probably too busy to read it anyway. And if you're unwilling to fight for your life, I'm sorry. Choosing to only accept or give validity to the bad things isn't something I can conceive.
I get up almost every day feeling like shite. I can't believe deep down all this has happened. I have no enthusiasm or emotions most of the time. I feel so bad for my spouse. I am lost inside. And almost every day I work on having fun, doing something meaningful, getting some air and exercise, connecting with someone, going through my thoughts to fight repitition and judge them honestly, care for my plants and animals, notice the good things happening around me, and learn more about what I really do believe, want, and don't want.
The day will come when I graduate. Not so much with a star as by moving on. I'm quite sure I will always use this board as my example of what people can be and what has real meaning in life. But I will put my soulmate into the past when that chapter has ended in the vibrancy of what she was and not what AD did to her. She would approve. She will join my parents and the other loved ones who's time ended before mine did. And because of that I have a choice to make which I have made. I will fight my way forward not only to survive this, but to put it into the past where I am occupied by what is much more than what was.
Interesting words perhaps but useless if I don't measure. And I am measuring. Is it as intense as it was before? No. Do I cry as often as I did before? No. Am I going out by myself more? Yes. Do I laugh sometimes? Yes. Am I goin to stop? No. And so on.
Good job, Wolf. I appreciate your efforts to jot down your thoughts during this time. Once I get my husband moved and settled into a new facility after broken hip, surgery, rehab, nursing home, new facility which is CRAP!!!, and now decision to move to a new facility, I'm sure I'll try to contribute a few thoughts. The new facility is perhaps twenty minutes from my permanent home so I will be able to move back and live in a place I'm comfortable and have a support network of friends. I may be selfish about this but it is what I need right now and makes little difference to my husband the trappings and decor of his surroundings. What is important is that I will see him everyday to help manage his care while at the same time having a semblance of a life. Carry on like a good soldier and for sure continue that laughing.
Today I had to return my DH to the nursing home. I'm so tired of hearing "now you can get on with your life". My DH is my life and has been for 36 years so what do these "well meaning people" expect me to get on with? Why do they not get that I want my DH back home and I'm grieving for the loss of not having him close to me? The deeper AD drags us in, the more I realize how short our time of togetherness will be. DH still knows me, tells me he loves me, and wants me to hold his hand all the time. How much longer can I have that even in the nursing home? With it being EOAD, I still have to work to provide for us or I would be at the nursing home all day and evening everyday. Like many others, our plans for our financial future were changed with the news that, at age 57, DH has EOAD. Thanks for letting me vent about people who, I guess, are trying, in a very small way, to offer me some form of comfort. I try to not let it show that their comments make steam come out my ears!
I hear you loud and clear. My wife was also diagnosed at 57 and is now 61 so we are EOAD as well.
We have earned a lot of repressed feelings inside. It's quite unavoidable since we put ourselves aside for so long while our life disappears in front of us. Despite these truths about what is happening we have to start thinking about what many here call 'afterwards'.
We are married 42 years and my wife doesn't know anybody anymore. It's a very tough road and venting is actually encouraged.
People mean well, but they don't know how to express it accurately. I haven't been told that I can now get on with my life, but people have expressed that they are glad I don't have the 24/7 hands-on responsibility anymore (since placement).
I know that I will be able to attend a grief group after he passes, but I really think there should be something available for spouses of dementia patients who are grieving while their LO is still alive. I conduct a support group for the Alz Assn, and we touch on anticipatory grief. However, in 1 1/2 hours, once a month--we are mostly occupied helping people nandle behavioral issues. More support systems should be in place to help those of us with grief while we are caregiving.
Hello and welcome. I haven't been contributing as frequently since my husband died which was in June. He was dx with this, that, almost everything, but dementia was at the core of them all. The initial dx was ftd in 2006. He was 46.
Marilyn, I recently went to a grief group. It was a strange experience. Right afterward I felt kind of invigorated, then could not sleep that night and was more than exhausted the next day. It was restricted to spouse/partners in their 50's and 60's.
None of the others had any experience with dementia; all cancer. Without exception the spouse's died at home and more than one said "I would never have PUT HIM in a facility, NEVER could I take him from his home". Never? Really?
Abby--dying of cancer is waaaay different, as we all know. They can say that because they had a time estimate, and a spouse with more or less of a brain until the end. When you know your time trajectory is...let's say...9 months to live, it's not THAT hard (relatively speaking) to gear up and do it at home. So, they don't really know what an AD spouse is dealing with.
Abby, as I have said many times before, unless someone has cared for a spouse with dementia, they have no idea the challenges we face and how difficult being a caregiver for someone with dementia is. I sure had no idea when we first started on this journey. Listen politely and know there experience was waaaay different.
My hb(FTD dx 2009) is currently in the hospital waiting LTC placement. He had a pulmonary embolism (blod clot in his lung) so was admitted for treatment (blood thinner).
I'm hoping that I'll feel some relief from the stress/sadness once he's placed and settled, but mainly want to say how grateful I am for this thread. Just read it in it's entirety...feeling so much less alone in my struggles!
Last Thursday I had to return my DH back to the NH. At that time he said he loved me and held my hand all the time. By Sunday he was in his own world that I could no longer enter. I am numb and having trouble processing that fast change in him. I'm so glad that I can tell others that understand what is happening. Living in a rural area, there are no other AD spouses that I can talk to about these changes. I hate AD!!! I just want my DH back even if it is in a limited way. Thanks for listening.
I hate AD too. I said to everyone when they asked what they could do if they could bring my Dianne back. They don't ask anymore. She couldn't say she loved me to save her life and wears padded hip protectors for when she falls down. Her right hand has a constant strong tremor almost certainly from a stroke but she is so advanced there is nothing that can be done except restraints which is not happening and her eyes are more vacant than deep space.
I just came back from three days at a cottage on lake muskoka with two friends who's lives are also changing and we talked together until late in the night. The saturday I left for there my BIL, his wife, and a niece who was Dianne's favourite came for their first visit. They cried like babies so I took them out to lunch afterwards. I bought a new computer game where at 61 I am taking on 16 year olds who hot key their keyboards and work as teams talking on microphones. I stink at it but I am putting in the hours. I bought shares in the company taking care of my wife. I think nursing homes are a growing market the next decade. I talked to my friends bearing up against terminal cancer. I went out for breakfast this morning, went for a power walk this afternoon, had a long hot shower and finally shaved, talked to my neighbour, made philly steak sandwiches for dinner and watched some of a sci fi movie, the daily show, the colbert show, and a saturday night rerun with Christopher Walkin and enjoyed them all while my cats came in and took the other chairs to sleep. I checked on the mars rover and saw the latest picture. Looked at the hurricane for Anderson Cooper (who finally came out I see), and am going out with the binoculars after this to look at the blue moon which is like any other full moon but occurs twice in a medieval calendar system. I'm getting by.
And there it is as plain as I can make it. I don't know if anyone else takes on the concept that AD is not getting both of us or what they may mean as opposed to what I mean. I just know what that means to me.
Re the discussion on cancer caregiving vs dementia: last night I had dinner with friends; they invited a man whose 1st wife died of lung cancer. He asked me some thoughtful questions, and then said something like "well, regardless of the disease, it's all horrible". I agreed, but it seemed like he was equating the cancer experience with AD. So I said--the thing about AD--it's so dramatic. There's no hope from day one, no meds that affect the disease, and in rare cases, it can take 20 to 25 years to run its course. He made no further comments comparing the two. I figured that by saying AD is dramatic, it wasn't saying that it's worse than cancer, but is generally more extreme in terms of hopelessness and duration.
Wolf, thank you for your 'gift' of saying it like it is. Along with the 'freedom' from 24/7 care, comes the constant CONSTANT everlurking concern and DREAD to have the phone calls..yet another fall..only a scrape this time..a knot on the head..whatever. The WORK of this doesn't stop it just changes. Thankfully we can go to the store and we can get outside to see the neighbors and can if there is enough willpower and strength left, manage to attempt a bit of normal when there is absolutely not one bit of normal anywhere but you are correct.. We are all trying to find some kind of equilibrium. Again correct that the battle is OURS to fight. I appreciate your candor and by writing it here, we are encouraged to gather up our various selves and keep on.
I know. I have told them to always start by saying how serious this call is. And the last one was. She went to emergency to get stitches in the back of her head when she fell. She's ok. But this one home is still the only home that has accepted her.
This is the hardest thing I've ever done. And by that I mean keep moving to a real life without her in a real way because it feels like abandoning them and it's the last thing you actually feel like inside. And it's the only path that makes any sense.
It's a continuous struggle to fight the vortex/swamp of down while trying to find ways to enjoy your life. Even that sentence sounds strange - but it is the only truth I can see which is real.
If we just survive this period we won't start with that until we're older and more beat up. And if we're so beat up that we don't try - then we know our future because we wrote it already.
Judy, there ARE normal bits and there ARE nice things and nice people even though this is happening to us.
ps - I just hung up from talking to my sister. It's her 63rd birthday and for the first time in years I remembered and made the effort to phone her and wish her a happy birthday. She will remember this all day and know she was being thought of. I also steered the hour long conversation back to her again and again so she got to talk about her own life and her own worries. I feel good about doing that. And even though my family has sucked in being supportive about AD, I'm working at understanding that I want my family in my life no matter what my own feelings of what people did and didn't do because everybody is up their neck in their own lives and I get to have my feelings and they get to have theirs. I still want them and choosing those things in a real way which is I'm not spending all my time thinking WELL YOU NEVER..., I also argue back against my own needs and say to myself that everybody else is weird but I still want them in my life. I am choosing and once I have I am moving forward and gradually piece by piece and with time, I can feel and see that it's slowly getting better.
I watch television and enjoy it now without thinking of the empty chair. It's not empty. There's a cat in it. I'm not erasing my wife. I'm learning that I can learn to live with it.
Wolf, I think that was a great thing you did while talking to your sister. You understand that everyone has their own life and it's own unique problems and perhaps they are swamped also. Reaching your hand out to your family will keep you focused on going forward with them even if they choose not to go forward with you. The grass is not always greener....... You won't regret your actions.
Hi Imohr*, good to hear from you. It was just a few days ago I was starting a new thread looking through older ones and saw your picture and wondered how you were. When I first came on the board you were one of the active posters. I hope you're well.
Marilyn, I have always felt that Alzheimer's is worse than cancer. My sister had ovarian cancer and she had hope. Once you have the diagnosis of AD, all hope is gone. Also, you still have the connection to someone you love if they have cancer. You maybe lose that at the end but not years before. The only disease which I would fear as much as AD is ALS. That too scares the daylights out of me.
Jang* I so understand what you mean. While I thank God my dh doesn't have cancer because it is so painful,,,,, I sure never wanted this to happen. Like you said there is no hope...... the sentence is evident. We as caregivers have to reach inside ourself,,,,, deep inside and find a reason to go on. Some days it is easier than others..... While all diseases suck,,,,,, Alz. is the suckiest disease I know of....... Boo for Alzheimers.
I visited my hb at vic general hosp tonight. He was sitting on his bed watching tv in a full diaper (bm)...the stench was ridiculous :( brought it to the nurses's attention. She cleaned him up so I could take him for a walk. Looked like his hair hasn't been washed in 3 days. There are nurses who amaze me. not the one who's been on the last 4 days. I wish I could write all what I'm feeling, instead I just cry too much.
gailn I am so sorry this happened. It is senseless how the very people that claim to want to help people are so ignorant in doing so. It is like they really don't give a crap. I am praying for you to relax and try to get some sleep or at least peace tonight. It will get better,,,,,, as a caregiver it is not strange if we make heads roll.... get my drift?????? Hope your day tomorrow is a better one....
So now I am a member of this group. I thought I would be sooner or later, but it is definitely sooner! I have a question. I placed him on Friday & I haven't been there to see him yet. My daughter went Saturday & Sunday & my son & his family are there now. I plan on going tomorrow. The lady in admissions told me to wait a while, but the social worker assigned to him said she doesn't agree with that. So now to all of you who have been “down this road” is 4 days long enough or should I wait longer? My daughter seems to think he will be fine when I come to see him (she said that he is settling in & adjusting fairly well). Any ideas would be helpful.
I had to go for me. My husband was placed over an hour away. Every time I visited in the first few weeks I would get a call in the evening to drive back up to try to calm him. He was fine while I was there-but became very agitated hours after I left. It didn't happen on the days I didn't visit. This is just what happened to us. Every placement is different.
I didn't stay away at all. My strategy was to be there often enough that he felt a continuity of my presence. I think it sort of still works, but it's hard to tell.
I just had to go on the second day to make sure he was OK..but they told me he kept asking for me when I left and got agitiated, so much so that they gave him more respiredone to clam him down....he seems to have settled now after 3 months. Of course each one is different, Tom may be OK .
Yes you can add me to the group who didn't stay away at all. There was just no way I could have left him there. Our social worker and his nursing home didn't agree with the separation time either. They encouraged family visits from the get go. I do however believe just as bluedaze* said, sometimes our presence can make them more upset when we leave. But, to me, that is just logical and something I knew beforehand would happen.
When I was thinking of the VA, I asked them flat out why they suggested I not go in for 2 weeks if I placed him there. They were honest enough to say it made the resident and the staff’s transition easier if they didn’t have to deal with the episodes after the family left.
In truth, placing Lynn was harder on me than it was on him. Forever his pleas to come home are etched on my broken heart. Not all will do that, but Lynn sure did *sigh*
I will be truthful, if I could have found it in my heart to stay away, I would have. Just to be spared the emotional wreckage of his transition. But, it just wasn’t in me, I HAD to be there for him. I just had to.
My best guess would be if he is calm during and after your daughter’s visit, he will be with you too. Of course he might be more upset when you leave, but they ARE equipped to deal with that. A hint of advice, I never told him I was leaving, or mentioned the word home. Others will agree that it works to use fiblets, like I will be right back I just have to go use the ladies room (or something like that) With their poor short term memories, they wont remember and it makes the leaving much easier on both of you.
It depends. I know people who did discovered that the daily visits to their spouse was making it much harder for them to get adjusted to living at the LTC. Others find that the visits make it easier. You can always start visiting and if it causes problems then take a break. If other people have visited with no problems I don't see why you shouldn't visit. I have been advised against taking children on the first visit because if there are problems it can be traumatic for them, you want to make sure everything is OK.
I went to see my DH on the second day after placement. I had to go for me to be sure everything was going well.
DH settled in very smoothly and never asked to come home nor seemed upset to be there. When I would leave him, I told him I had to go to a meeting and I'd see him later.
Follow your heart and if you want to go see him,do it. Hope all goes well for you.
Thanks to all who gave me their experiences & opinions. Both were very helpful. We placed him on Friday & I didn't go until Tuesday. BUT my daughter went Saturday & Sunday & my son went Monday morning & then Monday afternoon he took his wife & sons (the boys are 7 & 8 years old). They all reported that he was so happy to see them (he recognized them, but not as his children. He lost the relationship aspect over a year ago) & he never asked to go home. I finally went on Tuesday (our daughter went with me) & again he was so happy to see me. We had a really nice time. The activities lady came & did chair exercises & she bounced a big ball towards them & Tom joined in. Then she turned on some music & we actually danced (I know some of you saw the video on facebook). After about an hour & a half he started dozing so I told my daughter it was time to leave. I told him that we were leaving & that we would be back later & He just said OK & told me to drive safe. Yesterday I went again & It was the same (although he complained about the food). The nurses told me that he was doing fine & that they were trying to get him the food he likes (hot dogs & hamburgers). He was fine when I left. Today though I think he is realizing that I'm not there all the time so he was a bit more agitated & I made the mistake of staying for lunch. He got a little belligerent because he didn't like what they were having (but he ate some of it). They brought him a hot dog, but it didn't have ketchup on it so he was upset about that. He actually told me that he just wanted to go home. After lunch I got him to lay down on his bed & when I could see that he might fall asleep I told him that I had to use the bathroom but I would be back later. So I left. I am really bummed , but I knew that this would probably happen. I want to go everyday, but now I'm not sure. Maybe I just won't stay for any meals. So now my question is: for those of you who have placed your LO'S how often do you go & how long do you stay? I know every situation is different, I just want to get an idea of what other people do. Thanks.
I am very close to Jeff's ALF. About a 2-3 minute drive. I go daily, but at different times of day, and often try to hit a mealtime so I can feed him. It is, of course, a help to the staff, and a way for me to interact with Jeff. I will spend anywhere from 30-60 minutes at a time, usually just sitting with him, maybe reading the paper. I usually try to ascertain whether he needs help going to the bathroom, and I take him. A couple times a week I make sure he's well stocked with disposable underwear, wipes, waterproof pads (for his bed,) shampoo, body wash. (These things can be supplied by Sunrise, but it's probably a little cheaper for me to supply them.) Some days I will pop in twice, just because I want to. It depends on how busy I am that day otherwise.
H was in alf for only a brief period of time before his death. Before that, he was in a rehab for a couple of weeks. It is not that I am trying to rewrite history, or maybe I am...
The rehab was about 20 minutes away and the alf about 40 minutes away.
He hated to have me see him being fed by an attendant. I want to know what I could have done differently, what I could have done "better".
Elaine, I've been waiting to hear how you got on...sounds like it went quite well The Nh sounds very much like where my dh is, they do the chair excerises etc...the food is not always up to standard, but I must say yesterday it was lovely. I try to go every second day, though some times I feel the need to go everyday, especially if I'm worried about something and need to make sure he's OK. I go around 10.30am and stay for 2 hours, I like to see what he's having for lunch. I also like to check out his room, I have a big issue with things going missing, and making sure he has clean clothes to wear...no matter how much clothes he has there, they all seem to be either missing or in the wash....today it was his partial teeth plates, now would want to take them...! Thursdays they have people , choirs etc. come in and put on a concert, it was lovely yesterday. DH sings along with them, at times gets quite emotional and cries...me too. I have trouble getting away too, some days i want to bring him home. I think you just need to work out when, the time and how long you stay is best for you...maybe back off a little, don't go in everyday, I know it's hard to do that...and give him time to settle in a bit more. I hope it gets easier... I still struggle at times with the guilt, but manly sadness now
Thank you emily & Julia. I just needed to hear what others do. Julia, I think you are right, that maybe I should just go every other day right now. He doesn’t have any sense of time so he won't know that I don't visit everyday. I know that I won't go at meal time. It was just too stressful for me. When he decided that he didn't like the food he looked to me to “fix” it & of course being the “good wife” that I am I tried to. But that's not my job anymore. I hope that doesn't sound too unfeeling because I don't mean it to sound that way. I have already helped him change clothes & when the nurse had to change the dressing on his legs where the restraints from the hospital cut into his skin I helped to distract him & I will do whatever I can to help him when I am there. But I know that at mealtime he might not be very happy with what they serve (he keeps telling them that he just wants a hot dog or hamburger & they do special order it for him). I just don't want to be stressed out. I too struggle with guilt, but like you said.......sadness.