Thanks for asking, Wolf. The move went fine. The ALF is on a quiet residential street in a small town about half an hour from our house. I'd looked at 20 places in the area, reading reviews and state inspection reports, making phone calls and visiting some places, and this family-owned place seemed to be a good match.
I was a little anxious, not knowing whether the ALF staff could take good care of her. In addition to a state form listing her needs and disabilities, I'd typed up a page of information about her: my wife can walk short distances with assistance; if you put a fork or spoon in her hand and start her eating, she can continue by herself; in bed she goes to sleep on her back but may roll over, always in the same direction... all the important things I could think of. My anxiety was unfounded. The staff members are kind and professional. My wife received more attention and care than in a hospital.
Two of my her friends visited yesterday, separately. They sat with her for an hour or two, held her hand, and talked with her--the same thing I did. That may have eased the transition. My wife behaved much the same way she did at home. Because she doesn't speak, even I can't tell much she understands of her new situation. She seems okay, though.
As for me... It wasn't easy to give up the small responsibilities I've had over the years. Everyday caregiving activities of getting my wife up, getting her dressed, giving her daily meds, deciding on food and drink, checking whether a trip to the toilet is needed--others will take care of that now. And yet my overall responsibility hasn't gone away. It might even be greater now. I have to be sure that things are going well even though I'm not there.
Yesterday I was anxious, and sad, and sick to my stomach. (I hadn't expected that last feeling.) But I made it through the day. When I got back to the house last night, it felt very empty. Aside from the ghosts in my mind. Little sounds, like a bug hitting the window or the air conditioning coming on, would cause me to start, to look over to see if my wife needed anything. Each time that happened, it brought home the realization that everything has changed.
Thanks, elizabeth. I had another thought yesterday I might add: I've led a sheltered life, in a way, in that I've taken for granted that sad things happen to you. This was different. I've thought about this for months, and in the end it was a decision that I made. Sometimes you have to choose between different sad things.
It took me some weeks to see that the staff there cared and were doing their best and to see that my wife (who had lost speech the previous year) was not having any serious reactions to being there. I could detect no reactions to being there as opposed to somewhere else.
It took me some time to understand human beings that care become assailed by guilt. Not obvious guilt. Insidious guilt.
I loved that I could now sleep. I slept like a log from day one. I'm lucky that I have a friend I love who wrestles mightily with sleep because that helped me to understand very quickly that I at least get to sleep. No guilt there.
The nursing home made my life easier and yet gave Dianne more support than I was capable of. Bathing her wasn't best efforts anymore - it was professional. I didn't have to feed her - she had a dietitian now.
She also had a support staff around her and not just my 24/7 best efforts anymore.
RSA, yes things have changed and you are still taking care of her but in a different say. Placement is just another path on the same journey. Placement has its own set of issues but you will adjust and so will she. Yes it is true that sometimes we must make difficult decisions and I can tell you that placement was probably the most difficult decision I ever had to make in my entire life because I knew I was putting him out of the house but I knew deep down that I had to do it in order to survive. These decisions are all about survival of the caregiver because we know that we cannot save them although we certainly try our best.
After a week and a half, my life has settled down. My wife is doing fine in the ALF. Because she doesn't speak or respond in obvious ways to what's happening around her, it's hard for me to know whether she recognizes that she's in a different place. I've visited her almost every day, to sit with her and talk. I've taken her out for walks and once into town for an ice cream on a hot weekend afternoon. I could tell she still enjoys ice cream.
Something unexpected: Because I'm not spending as much time with my wife, I sometimes fall back into memories of the way she used to be. I might think, "The front lawn needs mowing," because my wife would have noticed. Small things. Except that I'm thinking of her as she hasn't been for years now. That's made it a little difficult. I wonder whether she's happy where she is, while I'm on the outside, so to speak. But then I realize--or rather, I force myself to remember--that I'd delayed the move until no other choice had seemed reasonable. It would make no difference to her, but it would make a big difference to me. Her friends and my family tell me I've done the right thing, that this would have been the right thing six months or a year ago, but it's still hard to avoid feelings of guilt and regret.
RSA thanks for sharing. I am just behind you in this journey so I appreciate hearing about your experiences and how you are feeling. Good luck and hang in there I know We Are doing the right thing but still so hard.
I mentioned closure because of something I did last night: I went through my wife's jewelry box. She didn't have expensive jewelry, but there are a few pieces of sentimental value--her wedding rings (two, because I lost mine for a time, and we both got new ones before I found it again), a pearl necklace I'd bought her as an anniversary gift, I think, the first year we lived in Germany; and a few pairs of earrings.
I have to think about what to do with the rest, dozens of earrings and bracelets and necklaces that she'd bought or received as a gift over the past thirty years. I'll see if I can give them to my family members. For a while I felt bad thinking about this, because it's something you might do after someone dies. But if my nieces and sisters and sisters-in-law think of these as keepsakes, little remembrances of my wife as she used to be, that's a good thing.
Robert, that's very much how my wife was. She couldn't communicate and was in the moment in a world of her own largely. She was there for three years before she was released from it. I was also congratulated by those around me for hanging in but that did nothing to change the guilt and regret I took no ownership of intellectually but suffered from nevertheless.
You are wrong that there is no closure. It came in two stages for me. As Dianne got worse it became stark that she was better off and needed the kind of support she had there. Showering her was an elaborate procedure with good equipment that I watched once. I could not have fit that into my bathroom and I could not have done what they did even with help. She had a dietitian who talked to me (and gave her coffee she hated anyway) but she got her bananas and I often fed her and the food was good. It was an awful place like One Flew Over The Cuckoo's Nest but they really did try and do right by her. It wasn't perfect at all but it was as good as craziness like this gets.
The closure came afterwards when she was at peace from it and some time passed and I began to look at it all more to make sense of it in my own head. Giving up on trying to take care of her by myself is something I hate was put in front of me. That didn't touch watching her go steadily absolutely helpless. I feel closure there too. We got a fatal disease and we did the best we could. This was our story. Even though she died at 64, we had a rich run together I wouldn't trade for the Mona Lisa original. It wasn't perfect but neither is Da Vinci.
It's not a topic anymore. The fact of the nursing home itself isn't a thing anymore never mind guilt about it. I met one of the nurses at the supermarket a couple of months ago and we caught up where she doesn't work there anymore either. I wouldn't have believed what I just said when I was where you are. But I promise you the whole nursing home part including the terrible guilt I felt doesn't seem important now. It's a part of the story.
I let her sister and her friends choose the jewelry they wanted to remember her by. It meant a lot to them and as you said, that's a good thing.
If I were you I would start by focusing on the fact that you might now get some real sleep and that's going to help.
Thanks for your perspective, Wolf. I am gradually adjusting: sleep is already okay (even if I jump at the slightest noise) and the aches I've gotten used to seem to be going away. I look forward to some kind of closure, eventually, though I also dread it.
I'm less prepared for my wife being in long term care than I'd thought. For the past year or so I've thought of myself as a spousal caregiver but also sort of a bachelor, in that I kept the household running without much help. Now that my wife isn't physically with me, though, I feel the isolation more. It's a strange thing, how the presence of even someone who doesn't really respond to you can make a difference. More adjusting is needed.
It's a big change to be alone in the house. For me after the first couple of months where she did settle in with a few bumps, this was the first time that parts of what the last years were began catching up with me. I haven't asked how well either you can cook. Cooking for one is it's own adjustment.
There was an unsettled period for me of a few months where I snuck into the NH a few times at odd hours until I felt I had taken reasonable steps to make sure she was in caring hands. I'm not sure why because we had zero other options. No one else would take her. But she did settle in and I began my career as a lighthouse keeper. I thought I was settling into the basics of bachelorhood; but, for me that wasn't true. Instead I was entering my lighthouse keeper in amber stage.
If you have any ideas or interests or any other objectives that arise during this time, I would pursue them. Painting was not possible when Dianne was with me. Throwing myself into some large projects of interest to me was important.
Being lighthouse keeper is an excellent analogy, I think.
My wife used to do most of the cooking, up until her surgeries in 2007, and then I took over. I've gotten reasonably good since then, to the point where I can plan out and cook a dinner without needing a recipe; that's been fun and worthwhile. But now, cooking and keeping the house straightened up, just for me? I didn't know how much I'd been motivated to do things for the both of us--now I'm thinking, "This house is way too big for one person."
I'm making an effort to change my life, to adjust. I took a short trip a few days after my wife entered the ALF, and I'm taking a longer trip right now. My wife is in good hands, from what I've seen. It's a tiny bit scary, though, which has surprised me. Not the travel itself, but the new emotional ground I'm covering.
The 2nd night Lisa was in respite I thought I would cook a steak I had in the freezer, When I brought it oit I realized how big it was, enough for both of us. Then realized everything we have in the freezer is packaged for two. The first night I got up in the middle of the night to go to the washroom. When I got back I realized I could have turned the bedroom light on and I can turn it on from now on when I get up! It is these little things that are different that make me realize just how things have changed.
I have those same feelings, Rona. For the past couple of years I've been quiet in the early evenings while my wife was asleep, and I avoided walking into the bedroom at certain times. Some of those routines still persist, until I think, "Wait, there's no need for that any more."
I'm still ruminating about the changes... I'll just write down what I'm thinking, in case it's of interest to anyone:
It's been just a couple of days since I've visited my wife in her assisted living facility. But my mental state has changed in some ways--not just because of this absence, but over the past couple of weeks. Because I'm not with her every day, I've started to remember how she was, rather than how she is now. I might see a curio shop or advertising for a craft show, and I'll remember how much she liked exploring such places, gaining inspiration for her own work. I might stop for Greek food or Indian food, and I'll remember what she liked to eat in such restaurants. In some ways these memories are rewarding, but I'm a little afraid that when I visit her next, the contrast will be a shock to my system. So be it. I'm not moving on, in the way that some people denigrate those who put their loved ones in an ALF or a nursing home. I'm coming to terms, which I think is a different thing.
I think you still have a thousand things to do and stay very connected when your loved one is placed. I don't think any of those on this site who have placed their spouses are saying, "Wahoo! Freedom! Let's head for Acapulco or Vegas!" It's a very tough but a very loving decision to place your spouse...very much still taking care of them, but in a different way. I've often thought over the years, both as a nurse working with families and as an Alzheimer's spouse and caregiver myself, that the AD patient is usually well-taken-care-of, (whether placed or not, but certainly does have that 24 hour care from a team if placed), but the well spouse is just "out there" without that cocoon of care. As has been said before on these forums, AD is one of the few diagnoses that is worse for the family or spouse than for the patient.
Placement for me was indeed one of the most difficult decisions I ever had to,make. It brings with it another set of concerns. I knew he was well taken care of but still felt responsible but a lot of it was taken out of my hands. I think the fact that I no longer had total control was hard for me. And the fact that he was no longer in the house was very painful. As I reflect back now 14 months since he passed it all seems almost like a dream or an event in a past life, which it really was. The entire experience has changed me on a very deep level and still working on discovering the new me. Those of you who are getting acclimated to placement, please know you have tremendous courage and that you will get through it. Know that you are doing the best you can and that is all that is required. One of the first things I had to do after placement was to find a new daily routine for myself--one that worked for both of us. In the beginning I visited too often and soon realized the emotional toll on me was too great. For several months I would take him out--we went to lunch, to the park in nice weather, to church, and I even brought him back to the house for a movie or lunch. But as time went on I had to let go of these things one by one. The last time I took him out was to a family gathering at Thanksgiving, which was about 5 months before he passed. The weather turned bad, I had my 93 year old mother in the back seat and he was in the front seat. I was focused on driving and he kept "talking" but made no sense. When I got him back to the assisted living, I knew deep down that would be the last time I took him out. None of us likes change but with this horrible disease, the caregiver I believe is the one having to do the most adjusting and changing. Just when you get used to something it changes. Just remember you cannot save them. You can only save yourself and you must take care of yourself if you want to survive the disease.
I don't think I am moving on. It's been three years since Kevan went into LTC and I feel no different. I feel like I am in limbo waiting for something to happen, waiting for God only knows what.
Elizabeth your so right! There is no cocoon for caregivers. I listen to Kevan complain about his life in LTC and I wish I had someone to make my bed, make my meals, serve my meal to my table. I would like to have to just go downstairs and have a really nice coral group sing for me or a band to entertain me. A Dr. to come to my room once a week to see how I am. Do I resent his complaining about everything? You bet I do. Especially when he says I have a better life then he has. He has no idea how lonesome it is for me. Everyone goes to see Dad no one thinks maybe Mom needs some love and concern. I know he has no empathy and that this disease is eating away at him and that that is why he says the things he does that hurt so much but needless to say it still hurts because the person I see now that I am not with him everyday is not the one I lived with for all those years. He looks and sounds the same but he is not the same person. He is sometimes very cruel and domineering. I'm told to remember that it is the disease but it's not easy to be a whipping post and say nothing. Not react!
co2
Your right. The caregiver has to change from moment to moment, day to day. He shifts from moment to moment and hour to hour, day to day. Just take things as they come and that is hard. Some days I just want to bury my head in my pillow and not get up. I just don't know what today will bring. It's been 16 years and I see no end. I guess I am just getting tired and I wish I could take a nice long vacation were there are no phones and no pain. The staff have told me not to answer his calls but I just can't be that mean. It might hurt him if I don't answer. Or will it? Who knows?
My little Willy comes and gives me love when He sees me cry. Good thing I have him.
Day 3 of placement. First day Lisa came from respite by medical transport I met her there she didn't recognize me and really ignored me said she didn't need me and to go awAy. Then asked for the dog I only need him not you. I think a lot of it was the meds they had upped them at respite as she was so anxious and afraid. Day two I woke up with blurred vision, i have seasonal allergies and eyes have been swollen and itchy but this was totally different like looking through a smoke covered window and blurry and eye would not cleAr. Did I have a stroke? So figured I better Check so went to clinic. No other symptoms but dr did see something that was maybe not right in the eye so sent me to eye doctor.
So had an hour to visit Lisa prior to going to eye dr. She recognized me but still said I don't need you and asked for the dog. Then said she was angry with me. I told her what was going on with me she understood I had a problem and then started to get upset and worried about me. Exiting was a real problem any suggestions? Wanted to leave with me followed me down the hall and then banged on the door. Had nurse there who was trying to divert and very quickly she was on to something else and seemed happy etc. I was going to go back but talked to director of care and nurse and decided not to. Today suggestion is I come in with the dog will see how it goes my fear she misses the dog more than me and so leaving with him I think may be a real problem we shall see. Need to divert her when I leave.
Eye turned out to be just fine think just the stress and I over reacted. Place seems very good they have got extra staff so Lisa can have a one on one aide for first few days she is there. Hope she settles quickly I guess it could have been worse will keep you posted.
Suggestions for leaving from a retired Activity Director:
Wait till she goes to the bathroom.
Wait until dinner and when she is eating, either excuse yourself, disappear, maybe a" fiblet" that you need to use the facilities.
Tell her you've got to walk the dog, but you'll be back.
Tell her you have M.D. appointment, medical test, etc. and will tell her all about it when you return. In the meantime she can wait for you here.
Do involve the staff, so they can intervene (with trip to bathroom), or repeat the information about M.D. or dog.... or or or.
Make sure the staff know ahead of time when you are planning to leave. They truly can help and have an activity planned that may work as diversion. This is much easier if they've had time to arrange activity and staffing.
Arrange for family member or friend to call her, just before you leave. Arrange it on your cell, have them call the nursing station. Again prepare this in advance with both nursing so they are expecting the call and friend so he or she is able to talk and not worry about possible garbled speech.
Today went really well I am relieved and happy. Going to try same tomorrow. Went with our dog jake and he was a huge hit so Lisa got to show him off. Then we even went out for a nice walk for about an hour. Was great just a few blocks away an off leach dog park on the dike by the river about a 20 minute loop. Jake went swimming.
When the aide came to get Lisa for lunch I just slipped out.
I'm glad there's an easier day already which shows they can be there, but this will take a few months to get used to I believe. Once I got used to this I lived in a limbo that was a lot better in some ways and worse in others. I could go out when I wanted to or had to because I had freedom of movement I had lost steadily the six years before. I could set my own schedule and I was in control of when I visited.
All of that was better for me. It also meant I was starting to live alone which had it's own challenges emotionally with the previous six years starting to catch up with me during that time.
In my case I sat on hold during that time because that's how I saw it. I had two arguments with friends who were frustrated that I wasn't 'moving forward' during those three years. They seemed to think out of sight out of mind but I was still caregiving and still married and still in love btw - or at least clinging to the remaining shreds. I have no regrets in how I spent that time.
To others though, I would put it this way. However conscious it is, various guilt is in play such as survivor guilt, having fun guilt, putting her in there guilt, saving ourselves guilt. There is no benefit to anyone if we waste life. When we know we want something I believe we should pursue that. I chose those words carefully. I gave myself permission to pursue whatever it was if I believed in it.
That may sound like romance or Paris, but it applies to almost everything. I had to claim the den back, where the TV is, in order to enjoy watching entertainment for it's own sake. I had to claim my joy of driving without a glaring empty seat. I had to claim the kitchen and make it mine. I moved back into the master bedroom and that became my bedroom. Not light off, curtains closed, on the left side. Light on all night maybe, curtains wide open all day and night, on the right side.
We have to understand that we enter this from the worst caregiver state we experienced. We're not talking about them now; we're talking about you. So if our spouse has been in there three days or three weeks, all of this is just hitting the ground and it's being experienced in what you will probably later agree was your worst state so far. It is very unlikely that we understand ourselves in any valid way at this point and it is also likely that we will be changing our view quite a bit over the next six months and then twelve months.
My own personal opinion is that it is harder to see them to the end of their suffering and that having the ability to get 24/7 help makes our own experience easier comparatively. Both roads are devastating to our lives and even though I felt real guilt, I don't feel any now. I wasn't being punished. And I have opinions on whether they receive better care in a nursing home or at their own home in later years. I also think that's individualized. Some have a conversation months before and some can't feed themselves or toilet years before. There's little sense in comparing any of these things given the massive reality ALL of us go through.
As I've said in other places, there's one door we're ALL going through and on the other side of that we all face the same thing. Every thing we can find, or do, or value as we go through this, is going to pay handsome dividends - and you can put that in the bank.
Great suggestions from Lindylou. They should go in the handbook that we ought to write. (Yes we should write a handbook, but who among us has the wherewithal anymore? Not me; I'm plain out of gas. My "ought but not going to happen" trash bin fills up the fastest these days.)
**question for myrtle: Does the final parenthesis go before or after the period, as in the last sentence? I see it both ways. When stressed, focus on minutia.
Rona, I'm glad to hear the day went well. I hope you and Lisa can build on this success.
marche, If the words inside the parentheses are NOT a complete sentence, the period that ends the sentence goes outside the final parenthesis (as in this sentence). If the words inside the parentheses ARE a complete sentence, the period goes inside the final parenthesis. (These rules just drive me crazy.) I agree; sometimes the only way to distract myself from a stressful situation is to focus on small things, like whether to put one space or two spaces after a period.
From Google: (When a complete sentence is enclosed in parentheses, place punctuation in the sentence inside the parentheses, like this.) If only part of a sentence is enclosed in parentheses (like this), place punctuation outside the parentheses (like this).
Yes, mary, I wrote it backwards; just fixed it. Wolf, the convention now seems to be one space. But most of my writing is not done for this site, and I am a product of the typewriter age, which called for two spaces. I won't even tell you what antiquated word processing system I use because you would probably die laughing.
Hey, Wolf, thanks for asking. It's been a little unusual, in that I've had to travel for work, and my almost-daily visits turned into a couple of week-long absences. That turned out to be okay, though it was difficult. My wife has adjusted to her new living arrangements. When I see her, she's about the same as she used to be, perhaps a little bit less capable. I've told friends and family that the visits I make are my most important responsibility, even though they're painfully sad. Not everyone understands that. I think I'm coming to terms with the situation, a month into it.