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  1.  
    So true--we are not "freed" by placement. There will be an emotional tether causing us to second-guess every activity we engage in...until there's not. I am Facebook friends with a lot of young people who know me because of my young adult children. So much optimism and excitement and hopeful anticipation of hopeful futures, and man, I hope they can keep that. But life is a different animal now, and I think I'm actually relatively upbeat under the circumstances. But yeah...you do have to learn to be ok with having moved into a category that is well beyond young and forward-looking. And I think "poignant" describes it well. It's not without it's pleasures, but we are made out of far different material than we were before. Yes, tempered.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2012
     
    And with that temperment I am staring out my window wondering how you re-invent your life. In fact I'm finding it's challenging to find the words to be clear enough on what I think that means and realize everyone has their own way of seeing those same things. In trying to understand myself I've seperated how I think about it into categories:

    1. The daily existence
    2. The ongoing responsibilities
    3. The continuing relationships
    4. What I do
    5. How's my driving?
    6. What I want
    7. New ideas

    It may sound weird; but, it's working. Instead of one big intertwined ball, I develop a scorecard to help myself.

    The daily existence - I need to be eating right, have decent hygiene, have food stocked, do laundry, water the plants, feed the cats, read the mail, and be cleaning the place as little as possible. How am I doing?

    The ongoing responsibilities - I have bills to pay, insurance, licenses, maintenance, decisions by certain dates, and a system that monitors stuff coming up like taxe filings due. How am I doing?

    The ongoing relationships - some of the people from my old life are still in my life. I need to pay attention to those relationships because I'm pretty funky these days. How am I doing?

    What I do - activities, entertainment, invovlement, passing time. What are they? Am I doing them? What do I think of them? What are my wishes and committments here? How am I doing? (If I say I watch the basketball playoffs am I actually watching? Am I actually reading? Do I go on the walks? Am I tending the garden?)

    How's my driving? - This is the open discussion forum for all my thoughts and concerns. You might call it how am I doing about how I'm doing? You could argue it belongs at the bottom but the next two are hypothetical. They don't exist. Everything above this does exist. So am I getting anywhere trying to get somewhere with the stuff in my life?

    What I want - I don't know. I never know. I will likely never know. I just don't function thinking that way but others do and they will want to define this category.

    New ideas - What can I do that's interesting? How do I get my mind over here? What new things have I done in my life and how did I get into them in the first place? How can I use that? Was there anything I wanted to try? How do I get myself in front of a menu I can look through?

    ......

    I hate lists. I use them when I can't just bring in my brooding sense of genius and wade through. That doesn't work as well when I'm hiding in a closet.

    I am so full of pain and sorrow I could scream and I do. I have no idea what's going to happen to me and frankly at times the prognosis isn't that great. I recognize that I likely have depression and that the stress and serious sorrow are real. Facing my new life alone isn't going to get any standing ovations. I'm not happy and I don't expect to be. I get that every time I do feel great like when I'm thinking maybe I'll do the rack of back ribs or just order a pizza - I think of my wife who can't have these things. That is both true and survivor guilt because there is nothing real about it being bad that 'I' have the ribs. But that's not going to change in a hurry.

    I need this list. I get my daily chores done now without misses. I get my ongoing responsibilities done and it's not a real problem anymore. I dreaded doing the taxes for her as another thing that marks what has happened. They're done now. My christmas tree is still up going on 18 months now and I honestly don't care. I've found all the surviving ornaments (all personal things she collected and was destroying or moving) and I will put them up in December. She's settled down at the home. It was a real worry but it seems to have passed. I like gorcery shopping. I like that I'm walking. I like my newspaper. I love my coffee. I phone some of my friends and I do nuture the relationships I have with more genuine care now. I allow the anger but I also remind myself of other things. I feel ok inside because when I go through that list I realize I'm coping and I'm getting somewhere a step at a time. When I'm down the things I've defined come to mind and help me understand this is just what it is and even though sometimes I'm not doing ok - overall I'm doing alright.

    Now if I could just for the first time in my life realize what I want.

    (I know what I want. I want her back. It's like that question what do you want people to say at your funeral? The answer is always the same. "Look! He's moving!"
  2.  
    Hi Wolf, when I was visiting my mom in the nursing home, I would watch the couples. One staying, one leaving. I wondered at the time how terrible the pain must be for both of them. While mom was still alive, I found out that Gord had Alzheimer's. I knew then that I would be one of those couples. God had other plans and Gord is gone. I think in many ways, it is harder on those of you who have had to place your loved ones. You have lost them as we have but there is an extra layer of pain for you.

    It sounds to me that you are coping. I did your check list for myself and I too am doing well on the mechanical things. Eating is another story but I am trying. I am sure there is goodness somewhere in English muffins and jam. Doesn't jam cover the fruit and veggie category?

    I think one step at a time probably covers those of us who have lost our spouse to death and those of you who have lost a spouse to placement. I am sending you the rope to hang onto. Don't pull too hard. I am not too far from the edge sometimes.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2012
     
    jang*

    Eat your greens. Dark greens.

    There was a very, very old man in New Jersey who lived on bread soaked in fatback and whiskey for years. Didn't eat or drink one other thing. They asked him why he didn't use bacon and he told them it wasn't fatty enough. True story. Modern doctors would have killed him in a month.
  3.  
    I love bacon.
    • CommentAuthorWolf
    • CommentTimeMay 23rd 2012
     
    Yesterday I was to bring the additional clothes I've gotten for my wife in a NH and I had a box of cookies for the staff. I showered and dressed and brushed my teeth and then saw myself in a mirror and broke down crying. "I don't want to go." I blubbered. It was shocking. She's been in for 4 1/2 months and I've gone dozens of times.

    This disease does a lot of damage.

    I'm learning to give myself care too and this episode reinforced the truth that I'm not just reluctant to go and see her. I've got real problems coping with this part of it in ways that having her with me never were.

    Part of that I believe is that when I was up to my neck I really did put myself aside. There was only the one thing. FIghting the disease. Now there are two things. Me in the new reality of what is now. And her in such a poor state it can tear your heart out.

    If I believed I could find someone without a lot of work, I would get some therapy. Unfortunately my experiences aren't that great. Lots of people can do their jobs but only some are good at them. If I don't find one of those, I'm wasting my time.

    Every single day I am combing through memories, feeling the reality of the damage done to us both, and working to find believable answers. Was it that my mother died in a NH? Was it something deep seated that I hated watching my mom deteriorate in there and now have to do it again? I don't know why going to see her now is so hard. I do know that it is. And what happened yesterday showed me how real that is.

    I'm struggling just as I sense in so many that have a * by their name. The psychic damage caused by this disease is both real and extensive. It brings forth a lot of questions. One is what is the end state? If we are to judge our condition what is the criteria? That we're not sad about it anymore? That we're sad but we're getting on with life? That we feel love again?

    If I went to a psychiatrist or therapist they would say it's normal to feel this right now. If they didn't I wouldn't trust them. No, I'm going through this on my own and see what I learn. Most of the days are spent thinking about everything anyways. And right away the answer was "we're not going. take it easy." So there are the clothes and there are the cookies and there is the christmas tree I never see. But there is also the clean house, the full cupboards, the healthy and content cats, and my knowledge that despite all this - I'm pretty happy to be here and have some time.

    Very early this morning I chuckled in bed. I saw one of those yellow coloured books entitled "Spiritual Survival for Dummies". I made a note to see if that title is taken. I've spent a lot of time in the deep woods. Up here in Canada there's no shortage north of us. The crow is loved by many creatures. Even the dumbest among them intent on their foraging know the crow calls. They travel in groups and one is always assigned the job of lookout. You'll spot that one high up. When that crow caws everybody hides. They all learn that if they want to survive they pay attention to that signal.

    So I will drop this stuff off this afternoon. But I won't stay. I need to learn not to be the dumbest animal on the block.
  4.  
    Jeff is not so far along, so he does seem to appreciate my presence, and we do have some quality time together at his ALF, despite his very limited comprehension and inability to speak many coherent thoughts. Just sitting and listening to music is good, or he just sits while I work on something I brought with me and get him a cookie.

    Still, I always feel a hint of apprehension as I prepare to go be with him, and I'm not sure what that is. Worry, perhaps, that I have let him down in moving him there, and that somehow I will see signs of that in his few words, or expression, or demeanor. It doesn't happen though, and I enjoy being there with him, even though I also always feel a little sorry when I leave.

    I think it's going as well as it could. But there is no such thing as emancipation through placement. I am happy to be able to do other things sometimes, without the need to make special arrangements for his care, but every day will remain built around being there to assess his needs and reassure him that he's stuck with me.
  5.  
    Wolf, even though I have had those days myself, it makes me so sad to hear of someone else blubbering at the mirror. I hope you eat a few of those cookies and cycle out of this low spot soon.
    After two years of placement I don't have as many of those blubbering days as I used to but the cycle continues.
    •  
      CommentAuthormary75*
    • CommentTimeMay 23rd 2012
     
    Wolf, ask around for a good stress counsellor. They are out there, but I think it best to have someone who knows one and can recommend them. A nurse friend of mine recommended I check it out, and it is the single most important thing I did. And we need all the help we can get.
    • CommentAuthorBrooke*
    • CommentTimeMay 24th 2012
     
    I don't have the heart to write and update our story. Suffice it to say, that inpatient Hospice has stabilized DH meds and will be releasing him in a few days. I am choosing a nursing home and feel broken.
    •  
      CommentAuthormary75*
    • CommentTimeMay 24th 2012
     
    Sending you hugs and prayers at this difficult time.
  6.  
    Wolf, when I used to visit my mom in the nursing home, I could hardly make my feet move up the sidewalk and into the building. When I was leaving, I was weighed down by the guilt that I felt at my leaving there. I can only imagine how many millions of times those feelings would have been multiplied had I placed Gord.

    Talk to somebody. To you and to Brooke, we send the rope to keep you from the abyss.
  7.  
    I agree with Jan...talk could help with perspective. Or time.
    Yesterday, Jeff's brother and sis-in-law met me at the ALF to see Jeff. They thought maybe we could manage an early dinner out. I knew it was a bad idea, but somehow felt compelled to test my own judgment, so we tried it. It was quiet, Irish pub food. Got Jeff a chicken caesar salad and partially fed it to him. But there was no pleasure or recognition for him in "being out," and it was just stressful for me.

    I think I just wanted to prove something to his brother and myself. It never felt so right to get him back to his pleasant, predictable, comfortable ALF home, find him a comfy sofa, and give him an apple. Of course I still have a smidge of the "guilt," but I'm starting to believe it's not guilt...it's just regret. Somewhere along the line we have to separate ourselves from the lingering belief that there's "something else" we could have done, or still could do. Apart from the aforementioned apple, there is little I can do for or with Jeff that enhances his existence in any substantial way, so I just take time to be with him. I hope he continues to absorb some reassurance from my love and presence, and I also do it for me.

    But I think grief counseling is not a bad idea if we're struggling.
  8.  
    I remember the moment I realized that an ALF would be the best environment for Steve. It was when I picked him up from the geripsych unit last summer, after 5 weeks of being strictly indoors. We were having a heat wave, the temp was over 100 degrees. When I brought him out to the car, he--a former sun worshipper--made no comment about finally being outside, the sun, etc. It hit me that there would be no point to outings in the future.

    When friends offered to resume taking him out to lunch, I encouraged them to pick up carryout food and go the the ALF. They are given a small, private room and have lunch there with him--it works well.
  9.  
    That occurred to me Marilyn, and it is what I will suggest in the future. The carry-out option. There is a room where we could gather a few people.
  10.  
    Emily, I think your remark that it isn't guilt, it is regret is really insightful. I think that it maybe applies to those of us with the * too. I am going to think about that as I get through this day.
  11.  
    Wolf, are you feeling any better today?
    • CommentAuthorabby* 6/12
    • CommentTimeMay 25th 2012
     
    I hesitate to write this because I fear that I will be jinxed.

    H was transported to hospital late in April and then to SKF rehab and is now in ALF. This, to me, is trading one source of stress for another. When H was here I feared for my safety. Now, I no longer have that acute fear. That does not mean that absence from fear is permament.

    It has been expressed here before. What if ALF seeks to dc him? What if the money runs out?

    His decline is so severe, I feel after every time I have seen him over the last month I have been thrown against a wall. He is so angry with me: I called the paramedics and put him there; I can leave and he cannot, and the list goes on and on.

    I used to think that ALF, a permanent, or semi-permanent placement was the answer. To be honest, as long as I can pay that bill I will choose this over him being here. But that does not mean it is without anxiety, at least for me...
    • CommentAuthorcarosi*
    • CommentTimeMay 25th 2012
     
    abby--give yourself time to settle into the new care arrangements. His condition and yours didn't get to this point overnight, and it will take time to adjust to the new situation.

    He cannot be discharged to a setting that perpetuates his being a danger to himself or others. They could send him .o a more secure facility, or one with morespcialized broblem.
  12.  
    Abby--Yesterday, I had a conversation with the director of Steve's ALF about whether he could remain there for the rest of his life. She said they rarely have to send a resident out--only if they need IV pain med (and then they go to inpatient hospice facility) or if the money runs out. In the latter case, they send people to nursing homes--not back home with their family. At that point, the Medicaid program would be the source of funding.

    If it will give you peace of mind, have the same conversation. Find out what the options are.
  13.  
    That was a good thing to do Marilyn. I have been thinking about the same thing, in general and because Jeff's decline has been so steep this year. I did ask that question before he moved in, and was told that they can, in most cases, keep people until the end. As demonstrated to me by the fact that his bed-bound roommate died the day before we got back from geripsych med adjustment.

    Abby--carosi is right that with time your stomach may settle a bit. Mine is starting to.
  14.  
    Most ALFs will be able to keep LOs to the end with Hospice in place. If the ALF does not provide skilled care hospice can. With drastic cuts in funding this may change.
    • CommentAuthorWolf
    • CommentTimeMay 26th 2012
     
    jang*, I'm ok thanks. I hope you are too.

    As carosi said, this takes time. I've put lists here to cut down on verbage. That's not as helpful.

    At first we can't conceive of it, or we think it's wrong, or we're bad, or we fail. All negatives.

    Then we reach some point which may or may not be clear where we DO conceive of it. And now stress kicks in high gear. Will they take them? How does this work? What does it cost? How will they be?

    Then we have to face our loved one and do this. If you don't feel bad doing this you are a psychopath and I mean feel horrible. So we have to face that day and then leave them there.

    Now we go home alone. Somewhere it starts to occur to us this is to be permanent. The truth is you are decompressing and while you do have thoughts and may do things - the years of active caregiving have a great deal of power on the psychology and that takes time to recover from (psychologically). Very little of that is concious - it is body shock.

    There is no default normality to rebound to. You may have children and friends and other family and they all can help in the moments; but, your life has again changed dramatically. And you may or may not think you are in charge of that or are running that - but I doubt that very much on a realistic basis.

    It took me almost five months to go from either thinking about my spouse and feeling really bad or blocking everything out and being in the moment - to now thinking what a shame it is that my poor spouse got this disease and what it's done to her and that is now part of my being engaged in the moment.

    It took me four months to realize I was terrified that this wouldn't work and that it IS working and this is the way it's going to be.

    My stomach no longer flips on any news or non-news. I'm actually and fully in the struggle to make my life on my own something. I don't get weird realizing I really do have to find a funeral home and make arrangements. She could go another year or two or may be gone any time.

    I know she's had a second stroke. Her left hand doesn't stop shaking now. I think they know too; but, what are we to do? She can hardly walk and I haven't seen a 'tell' that she knows its me in numerous weeks and virtually nothing before.

    The saddness and strangeness are powerful. I've had to adjust to cooking and shopping food for one. I've had to adjust to the quiet and lack of demands on me. I have no clue what I will do next month or next year.

    Now some people won't admit to any of this. Each person has their own tactics to get through. There are no qualitative statements that have a function. In other words each situation is seperate reality even though they are similar from the outside.

    I mentioned layers of self assessement above. There are several key indicators for me on the first one where I try to stay reasonably self aware. Am I doing weird things? Even though I have an understandable short frustration fuse - is it gradually getting better or worse? (When I spill the thing am I getting better at just cleaning it up and not feeling that much like yet another thing has gone wrong?). And the last important one in the first stage for me (first six months) - am I having any positive feelings and experiences that may be more momentary but are there?

    This whole thing and the same for the * people is a workout like a two year program to get fit, except it's almost the reverse. A two year program to settle down and learn to be alright with myself as a single person who has survived this disease.

    My view is that some things in life you let happen and get involved. Like having a person enter your life, sharing that life, and going down that road together. This is not that, I believe. This is conciously get yourself in shape. Success in that is not even thinking about this much anymore (so quite the distance).

    Threee years from now my wife will almost certainly be free of this and at peace. I will be further down the road I am on right now. Learning to be me and learning to enjoy my life alone. Whether I meet someone else or take up skydiving are equally irrelevant to that fact.

    This post is also irrelevant. The only determining factors are what is inside you and where you take that. I have another year where my primary goal is to manage. That is all things are viewed in a supportive manner to me (help yourself get through this and time is likely to put your feet back on the ground).

    You gave a lot at real cost to yourself for your spouse. Can you do it for you?
  15.  
    I don't know who I am or if I can do it for me. I was always and foremost a wife to the detriment of many relationships. Then I was a caregiver and according to comments and cards, a very good one. Now I am a widow. They all think I am doing well but am I. I really don't know.
  16.  
    Thanks so much for this topic.......Going nuts tonight!
  17.  
    Hi Ann, I think we are all familiar with going nuts. How are you doing now?
  18.  
    Just so lonely.........
  19.  
    Well, that I understand. My best effort at a "solution" is to find stuff that keeps me busy enough to be distracted. Seeing people, any people, helps.
    •  
      CommentAuthorNikki
    • CommentTimeJun 4th 2012
     
    Yes Ann, the loneliness can be crippling at times. The only thing I find worse is the longing for what once was. It is physically painful, and emotionally it is a constant feeling of being homesick. I know everyone says you can’t hold on, but for me it is harder to try to let go. I find I can’t, nor do I want to.
  20.  
    Seems the only people I see are the nursing home residents. They do, however, always make me smile! Just been waking up knowing that I am all alone.........Ny parents are gone now, too. The stress has played havic with my health. The doctor now ways that the gall baldder problems that I thought I was having was most likely a heart attack. I'm 55! Oh well, if it has happened, it has.........Just would like a break for a minute or two or is that selfish? I would think it was selfish and become more stressed!

    How about an East Coast get-together for those of us who really get it?

    Thanks for reading my rants!

    Ann
  21.  
    I'm East Coast (Maryland...right in the middle.)
    • CommentAuthorJean21*
    • CommentTimeJun 5th 2012
     
    Coast of SC.
    • CommentAuthorWolf
    • CommentTimeJun 5th 2012
     
    In a deep hole north of the great lakes. I tried putting myself out with the trash but they wouldn't take me. I think one of my cats slipped them some money so I'd keep feeding them. I'm so lonely the plants I've managed not to kill got together and slipped me a note that it's difficult to bloom in a house full of such negative energy. I screamed at them.

    I'm 61 and have decided to live alone which is why every time my mind sees someone roughly my age (checking always proves them younger) who looks like a nice person, my brain does weird things. Could I live with her? She seems nice. Wait! Wait! I'm living alone remember? And I already have a wife. Besides she may be an axe murderer.

    There is nothing for it but to figure out how to connect with new people - next year - maybe.

    Hope you guys get together. Whoever you are, you already have common understandings and common experiences. Pretty good start for a visit.
    • CommentAuthorWolf
    • CommentTimeJun 6th 2012
     
    I'm going to apply for a job. Actually I'm going to apply for several. I haven't worked in 8 years, I'm 61 years old and the last thing I want to do go and work for some schmuck at some self important company that can't think their way out of a wet paper bag. So I'm doing it.

    I'm inviting the neighbours over for a BBQ where I'm going to burn the little nest egg it took us a lifetime to build up. I'm making little yule logs out of 10's and 20's wrapped tightly in string. It should make for some lively conversation and I may have to stop people diving into the campfire; but, I need motivation and if I have that little nest egg still I won't take the job hunting seriously.

    I could just take some terrible risks and see if I survive and if surviving kick starts my pulse; but, I'm not really looking to possibly die. Just suffer terribly. And there's nothing like absolutely detesting what you're now
    doing and having no choice but to do it to take your mind off the detesting it's currently occupied in.

    Here's the kicker. I'm going to roll the money yule logs but not have the campfire until after I get the job. That could be quite a while. In fact I don't expect to get a job and even though I can walk and chew bubblegum at the same time, I wouldn't hire me for the decent jobs I'll be applying for.

    If that doesn't work, I'm going to Plan B. Plan B is applying for jobs I might actually get like accounts payable for some poorly run outfit that never pays their bills on time anyways. Now I can start showing up all perky at 8 am every single morning and do excruciatingly boring work in completely uninspiring circumstances for the rest of my life because I burned all my money in some yule logs because I'm too stupid to accept that life dealt me a hard thing to accept and even though I was in fine health and quite capable of figuring out how to build new things into my life - I didn't. I spent all my time anguishing and wailing that I didn't get what I wanted my whole life - just 42 years of it and even though we all want that life we had with our spouse - I can't have that any more so I gave up.

    Well, I have this plan. And if some putz actually offers me a decent job, I'm going to explain that I don't see sufficient career path for myself and turn it down. That's what they do, I can do it too.

    I'm not stupid enough to either burn the money or take a job. I am stupid enough though to sit here staring stupified into space completely lost to the world after 5 months of being home alone. And I can see I need real world experience to remind me that on the whole I can feel sorry for myself while I'm swimming at the beach as well as I can trying to please some egomaniacal, underpaid, underappreciated, and underpromoted neolithic wanker every single day for the rest of my life.

    My wife has now been put on a parkinson's medication. Both her hands are shaking and she's starting to stiffen up. If I were her, and she was me, and I could focus everything I have left in one single thing, I would shout at me. "Get up! Go out! Live a life!"

    I feel so badly for her and frankly I'm stunned that all this has happened. No one is going to come charging over that hill to save me. It's all so powerful to be honest it's tough to feel enthusiastic about anything and I go through many days in some sort of insulated stupor. Normal looking enough on the outside but pretty dead on the inside. Full of saddness for her and for us. I know. But one way or another I must connect to a new life that has meaning and at this point in life there's no line up of applicants looking to be my shiny new friend.
    • CommentAuthorWolf
    • CommentTimeJun 6th 2012
     
    Part Two -

    So to summarize, I'm beat up. I'm depressed. I'm emotionally compromised. I'm almost a senior citizen. This is the last thing I wanted to do at this point in my life. And I have no choice. If I don't connect to a new life that gives me some meaning, I will wither. I can be alone if I want, but then that has to have the connections and meaning. Going through time detached from life is not healthy. Detaching ourselves from life is not respect for our loved one in my opinion. And Alzheimer's with our spouse in a residence does detach us from our lives. So the condition is real and understandable.

    Let's skip over lightly on what we all know about how hard all this is and jump to the end point. The goal is to be happy again. For some it honestly isn't. I believe some have beliefs about never being as happy again out of respect or some form of that. Which is fine. That isn't what my wife or I believe. The goal in this house is to be fully happy again full stop. I accept completely that my mum died. I love her and her ashes are right here beside me. I laugh and if she wants she can laugh with me. I love my Dianne so much there's just no point explaining it. She's my soulmate and there is zero doubt my last thought will be of her. She's welcome to be with me in spirit as there's plenty of room. I hope that we can get her to have peace without much more suffering. I'm not waiting at the start line for another year or two just because it's easier to languish here than face the truths. It's been 5 painful months where all I can do is help somewhat because it got to be too much for me and all this painful reality is still sinking in. It's time to start pushing. My connections have been cut and I need new ones. They're not in my house. I've looked high and low but the only things in this house are memories. And that's ok. But it's not a life.

    Now if I could just get that penny...to...drop.
  22.  
    It's hard to figure out what to do, especially if there's nothing you MUST do for purposes of physical survival. I think, though, that there are things that you MUST do, even if earning a living via a job isn't essential, and there's a roof over your head.

    I don't have the answer yet, but I can tell for sure that sitting around wondering doesn't work, and seeing other humans does help. Because I have young adult children who tend to place requests upon my time, I'm not going to get myself a PT job at the local coffee shop right now, but otherwise I think something like that would be a really good idea. You'd see all kinds of people, and "regulars," and learn a new trick or two. Pick somewhere local, not run by jerks. We have that luxury.

    For now, instead of that, my strategy is to try things. Right now I'm trying a QiGong class that meets Wednesday evenings at the community college. In the Fall I'm going to try some other kind of class--maybe beef up a language I've studied, maybe art.

    I'm going to drop by my sister's more. I'm going to find events that look interesting and go to them. By myself if no one is available.

    The plan is that eventually these efforts will begin to form a supportive mesh, and raison d'être. You're right--you gotta do something. Start.
    • CommentAuthorxox
    • CommentTimeJun 7th 2012
     
    I don't have any magic pixie dust. All I can do is offer some hope.

    My mother-in-law died of an extremely rare degenerative disease that went on for years and included dementia. When she died she and my father-in-law were married for over 50 years, they never had the big 50th Anniversary Party everyone looked forward to due to her health. He became a full-time caregiver and only hired help (24 hour nursing care at home) towards the end. When she died her daughters were very concerned that he would follow her in the next 6 months. You could see that he had lost much of himself by the time of his wife's death.

    After 6 months he started getting better. He misses his wife. He has to deal with having a daughter with FTD (I can't say right now who will outlive the other). But he enjoys life now. He has a girlfriend (I don't think they will get married, she is a widow and they each have their own lives).

    So I want to just use his story to offer hope.

    Wolf, you are still at the stage of ambiguous loss. Your wife is alive but not there is various ways. So it is harder. But some things take time. And I saw that knowing that someday I will be in your shoes.
    • CommentAuthorcarosi*
    • CommentTimeJun 7th 2012
     
    Part 1


    I’ve put in 24 years of active, hands-on Caregiving, though the first ones were somewhat easier when DH was still able to do things, go places,and drive. I swear I’ve handled just about everything anybody has bumped up against in dealing with the VaD, Dxd in 2006—starting Stage 5. And then we had an altercation and I had to call the Police to take him to the hospital in January. After 2 weeks of diagnoses, treatment, facility transfers, complications, and the added Dx of Congestive Heart Failure, he was transferred to a NH—luckily (angels watching over us) the one I’d been trying to get him into.
    He’s been doing pretty well at settling in. while my life has continued on a crazed path of Short Sale the House, find an accessible, subsidized apartment and move, dismantling 29 years of living In that house. I’ve been working hard to settle in to where I never wanted to be, while keeping tabs on his care and condition. When he went Into the hospital, my entire routine and schedule went out the window. His 16 hours of in-home help stopped. I’ve had to resume chores that were being done. The Caregiving load is lighter in ways, but my physical workload increased. My sleep, only getting 4 hrs a night before, hasn’t improved much –in fact is more erratic. I’m trying to find my feet. Finally, I’m getting some decorations up—I’m not a gray and white person—the apartment is. It has to become mine. DH’s cat, the only one I was able to keep, has finally decided to become my friend—it’s taken just over 2months. I’m working at getting brave enough to leave the apartment in my power chair and go away under my own steam, alone. For so very long the only time I went was on a GoBus, to appointments or the store, and most of the time with DH. There’s a whole world out there, and I have to reconnect. It’s easier to read. I can go anywhere, do anything, and be safe. But that’s not living.
    Early on in our marriage we did a lot of things—some I never even thought of. Rustic camping, small game hunting, fishing, ice fishing, DH took me with him even when I’d be on the side lines—skiing, skating, and that was good too. If our situations were reversed, I’d want him to regain all that. He’d want the same for me. I am resolved to get reconnected and when all is said and done, I want to, and plan to live as fully as possible, for both of us.
    • CommentAuthorcarosi*
    • CommentTimeJun 7th 2012
     
    Part 2



    This hit home extra hard Wednesday, because a couple things happened. One, I’ve always kind of wished I could sign up for one of the Symphony series here but never did because of . . .sigh …………... I signed up for the coming POPS series for 2012-2013. A step forward. Two. Over this last weekend DH had a second flare up of his CHF, complicated by Aortic Stenosis. Wed. afternoon he saw a Cardiologist, who called me just after 5. The culprit behind DH’s CHF is the Stenosis. It is in the most severe stage. The treatment is major surgery—4-5 hours of anesthetic and a heart lung machine. He asked what my thoughts were about this. I told him, from long ago, before the Mental Illness and VaD, DH had always said “When I go, let me be gone.” He wanted no part of respirators, feeding tubes, no extraordinary measures. We have a DNR already. Given the Dementia and his overall condition , no surgery. The Dr. agreed. He said he would have a hard time getting a Cardio-thoracic Surgeon to even consider it. He even said that given DH’s entire condition it would be immoral to put him through it. DH will be treated with Palliative measures. It will be a hard thing to watch his condition progress—no better than watching VaD., IMHO. The Dr. did say though that most times you don’t really see a crisis at the end. The patient may go to sleep and then not reawaken, or e sitting in a chair, and then be gone. Given the status of his Stenosis, the Dr. indicated that we probably have about a year. I always kind of worried about having to act on the paperwork of being his Patient Advocate; his Guardian, if it came to this, but it wasn’t that hard to just tell the Dr. this is what DH wanted. ` I think the Dr. was relieved that I answered as I did,.
    And now, I go back to building a new life, as I help DH finish his. I will proceed with my health improvement efforts. And at some point I hope to make some new friends. I also hope to find a new companion. I’m not afraid of that kind of commitment. The potential of becoming a Caregiver again doesn’t scare me. Been there; done it. Know the ropes, and I will have help from the start. If it’s my turn to be the Caregivee, he will have help from the start—not saddled with 24/7/365. I’ve missed the companionship for a long time. Someone with a few dings and dents of their own would be just fine because that person knows about the knocks life can deliver and will appreciate sharing the hugs and the shoulder to lean on.
  23.  
    Wolf--getting a "little" job is actually something I've considered, for the reasons Emily suggested. My problem is that I don't seem to have the spare time! It has come down to doing that or taking painting lessons (something I've always wanted to do), so I'm going to opt for the painting.

    I know your thoughts about a job weren't serious, but have you considered something connected with your art? You certainly are talented in that arena--perhaps an art supply store or gallery? I worked in retail after retiring from my career, and as Emily mentioned, the most interesting part is probably the parade of people it puts you into contact with.
    • CommentAuthorJudy
    • CommentTimeJun 7th 2012
     
    dear Friends..so thankful for this particular topic. I see almost everything I've experienced in your comments! wow. I've 'claimed' to be an artist for years. I taught art in high school and junior high. Later taught art to children after school. Even later, painted and sold works through a local gallery and at annual art shows. Seems like a simple thing to walk to the easel and get to work doesn't it?

    The concentration is not there. The concentrationn was on the 24/7 needs and doings of DH before he was placed.. The concentration is now on how things are going and what is needed NOW that he has been placed.. I am on edge constantly for the phone call..the reports of his uncooperativeness and his combativeness. He may be kicked out..I don't have plan B.

    I have conversations with 'myself'.. self..get out and get to an art workshop, get away from this 'long enough' to feel the zest of DOING something normal. Again thank you all
  24.  
    Wolf, perhaps I have mentioned my sister before. I am not sure. She was amazing. She was married for about the same time as Gord and I. In fact, I think her husband died a few days after their 46th anniversary. We all thought that Joan would just give up. Fred had been her entire life. Her universe centred around him. After his death, we watched, ready to help. She picked herself up and started going to all the activities that her senior's apartment building had. She never liked the company of women but that was all that was available. She continued to fill us with pride. She met a man several years after Fred died. He was everything that Fred wasn't. They lived in their own places and had a wonderful few years. Then Joan was diagnosed with ovarian cancer. Once again, she was amazing. She never cried, she never said why me. In the middle of all this, her friend went for valve replacement. He survived the surgery with flying colours but not the infection that came a day later. Again, she was face with loss and again, she was so courageous. Eventually, she lost her battle. She promised to be with me in spirit as things declined with Gord. She hasn't come back yet but I am waiting.

    Anyway, the point of this long story is that I want to be like her (without the boyfriend). I do not want to throw away whatever years I have left. I somehow feel that is the way you feel too. It is more difficult for all of you whose loved ones are placed but there has to be hope and happiness for all of us if we try and have courage.
    •  
      CommentAuthorNikki
    • CommentTimeJun 7th 2012 edited
     
    I don’t know perhaps it is only me, but I think there is too much pressure about starting a new life. I don’t honestly get the “new life” plan. I am not quite done with the life I am living yet, so I am in no hurry to try to start a new one.

    The simple fact is I have a spouse with Alzheimer’s disease who happens to reside in a nursing home because I couldn’t provide the quality care he needs. I am still his caregiver, his advocate and his wife. The only difference now is I am not with him 24/7. But my day still revolves around Lynn. I suppose if I didn’t go to see him every day there would be a lot more alone time that I would have to try to deal with. As it is my days are hectic.

    Now the nights, that is something different altogether. I have family and friends always telling me I have to get a life. Finally I just snapped back who are they to judge the quality of my life? I was never a partier, I didn’t go out every night of the week. We never did as a couple either. We were not big on social gatherings. We were each all the other needed. I find nothing wrong with that, in fact I loved it!!!

    So I don’t know why people think I should be out starting a “new and exciting life” now. Why should I have to change the core of who I am to please others? Am I ecstatic, certainly not, but I am not completely miserable either. “Life” has a way of carrying on whether we want it to or not.

    It's been three plus years since placing Lynn, I still feel lost. Not as crippling as it use to be, but I still have a limp….I just don’t see my life changing until my role as Lynn’s wife is truly "done". I would venture to guess I will miss Lynn presence until I draw my last breath. There is nothing about getting a new life that can help with that particular ache.

    The only thing I can think of that could help those who have too much time on their hands is perhaps spend some of that time doing something to help others. They say in helping others you find healing for yourself. I personally believe that to be true. I know my visits with Lynn make his quality of life so much better. To see him smile just fills me with so much joy. I have “adopted” some of the abandoned residence, and to see the happiness it brings them truly does bring me happiness too.

    I know that isn’t for everyone, but there are other “worthy” causes. Maybe be a “big brother/sister”, there are so many children in need of some extra love. If you like animals, maybe volunteer at an animal shelter? You get my drift…

    We spent the better part of our lives as a couple, it is only logical it will take some time to adapt to living alone. Be a little gentler with yourselves. In time you will find your way ((hugs))
    • CommentAuthorWolf
    • CommentTimeJun 7th 2012
     
    There's lots of good ideas and it's all different for each of us depending on how we see things. I found the experience very different after my wife went in Paul from when I had her, but that may just be me.

    I suspect that just as we say when you've seen one case of Alzheimer's you've seen one case of it, that may also be similar for the surviving spouses. Each person has their own blend of needs and interests not to mention a host of other variables that make up what we are.

    And whether we choose something like watching the interesting people in some part time interesting place or take up an interest or a cause, with any luck whatever we pick has a chance of working for us.

    Jang*, absolutely there has to be hope for all of us. I see you considering our position as difficult above, but, we all end up in the same reality which is pretty much starting over by ourselves. That has to be the hardest part until we actually do get our feet on the ground in accepting and living again. And by living again I mean living our lives outside the shadow of this disease and the damage it has done to all of us.
  25.  
    Nikki--for me, it's not an either/or proposition. I visit Steve every day, and plan to continue that. However, I'm trying to ease into some new interests, so that when he dies, I'm not left to do the entire transition at that point. That's one reason I want to do the painting class; a friend told me she took one painting class a week, after her husband died, she upped that to 4 classes. This in no way affects my devotion to Steve or the fact that I miss him and always will.

    Obviously, developing new interests doesn't mean you have to change who you are. Partying every night would be rather strange--to say the least--if it has never had much appeal.

    Your statement about doing something to help others is right on the mark. That's why I'm so involved with the Alz Assn. We have gained a lot of knowledge through the caregiving experience and there are multitudes of others out there who are following behind us.

    In my opinion, I think it's a little dangerous to invest one's self 100 percent in a spouse with a terminal illness. Our spouses wouldn't want us to do that. This may be unavoidable while our LO is living at home, but once they are placed, a little moderation needs to enter the picture. And I guess my survival instinct is telling me to give myself a cushion of a life to fall back on when he passes; but this is an individual decision each of us must make.
  26.  
    Nikki--I sure do agree with your contention that we must allow ourselves time, and not feel pressured into starting a "new" life. I am thinking about quite a bit, as the next steps I might take are NOT obvious to me so I'm taking tiny tentative steps.

    Like you, I do find that attending to Jeff at the ALF does provide part of the structure of my day. But he snoozes a lot, and frequently it is not that meaningful to him to have me hanging around, so it does not serve me well to be entirely invested in caregiving. I enjoy our time, but the disease has taken him so far from me that even when I'm there twice a day (typical) I would be left feeling very lost if I tried to depend on our relationship as the emotional backbone it was for the good-health part of our marriage. He can't do that relationship anymore. Sometimes he's responsive to me, sometimes not.

    For me (and I mean no comparison to yours or anyone else's relationship to his/her spouse...just speaking for me,)...for me, I really must acknowledge that he has moved on, and I must grow up and find new methods of bolstering myself emotionally. It is not his fault that he cannot provide this anymore. I recognize that it is doing me damage to "live for him," because mostly what's left is a sad little patch. Moving out of that patch is difficult...it's work, sort of, and I have a reluctance. It's a little like doing physical therapy...you resist it, sometimes you hate it, but you know it's the only thing that can save you.

    I guess it comes down to how each of us, individually, needs to be aware of whether we're sinking or swimming--where we are, right now. There is probably a good bit of semantic indistinguishability to the whole "new life/old life" lingo. It's just life. Do you have enough of it, or not? If you are sufficiently engaged doing whatever it is you're doing--caregiving, other activities--then you're probably swimming. I think we can feel if we're sinking...then we need to take steps, and they may be things that take us down paths which have nothing to do with caregiving.
  27.  
    emily, your comment about sinking or swimming made me stop and question myself. I think I am doing a frantic dog paddle but my head is above water which is always a good sign. Nikki, I also agree with you. I couldn't do volunteer work for the Alzheimer's Society. It was just too close to what had been my reality. I am volunteering at our major cancer hospital. I feel satisfied after my shift if I have connected with even one patient. Their reality is really lousy and my heart goes out to them.
    •  
      CommentAuthorNikki
    • CommentTimeJun 8th 2012
     
    I don’t have the time to post all that is floating around in my head, but had to write that Emily what you said about it being just life, and Marilyn what you said about it not being an either/ or proposition really hit a nerve with me. I think that is my whole problem with the terminology “get a new life”

    The part of me that still loves Lynn, that will always love Lynn - is rebelling against putting his memory on a shelf and “starting a new life.” I can’t do that anymore than I could forget the love of my Dad. What we go through in life forms who we become. We don’t just start over when we lose someone we love. More we carry them in our hearts as we forge our way onward without them.

    Thank you for clearing up for me why that terminology was hitting such a raw nerve in me. I couldn’t quite understand it myself. I DO know no one meant forget your loved ones, but it just “stuck in my craw”….. Quirky perhaps <smiles>

    Our lives are filled with shadows are they not? I know mine certainly is……

    I have posted this before, but I thought perhaps this would be a good place to share it again. It read it at a particularly difficult time in my life and it resonates still in my heart….

    "When speaking publicly about suicide, I like to tell the story of the tree and the tree house. It's a true story. There is, in fact, a tree, and are remnants of the tree house. Both are in my backyard.

    The tree is sturdy, large and leafy, taller than my two-story house, and mature, its trunk nearly three-feet thick. For children from a bygone era it was nature's version of playground equipment. More than just for climbing, the tree's hand-shaped branches held a tree house built many years ago by a farmer for his children.

    As the years passed, the tree house fell away until nothing was left but a two-by-four attached to the trunk. As the tree grew taller and thicker, the board climbed higher and sank deeper into the trunk. Obviously, a board with rusty nails embedded in a tree is not natural to the tree, but the tree continued to grow so that today the trunk, bark and board are one.

    The lesson that perhaps can be taken from the tree and the tree house is that when a tragedy becomes attached to our hearts, then we must find a way to grow with it, grow around it and allow it to be with us, but of course not become us. That is growth. And growth takes courage."

    Dave de Felice

    I am diligently trying to work my way through the grief, to not run from the pain, but to grow and change with it; but not let it consume me. I am a work in progress……..
    • CommentAuthorZibby*
    • CommentTimeJun 8th 2012
     
    Excellent story/analogy.
    •  
      CommentAuthorJudithKB*
    • CommentTimeJun 8th 2012
     
    More often then not...when thinking about the above mentioned position, of life without your spouse or after placing your spouse. I try and think in the terms of what would I want from my dh if I were the one being cared for in a ALF,etc. And, without hesitation I would say....bring be flowers on Sunday when you can and come and see me just once through the week and bring me my sweet treat...and I will know you are still thinking about me and you know what those two things mean to me...but, please, please don't let this terrible condition I have have affect how you will live the rest of your life...live it to the fullest, I have had my life and now God has chosen this way for me to leave this earth and he will chose the way you will go too, but until that time, I wish you happiness and never have I doubted the love we once shared....that chapter is gone because of this condition I have and it can never again be like it was....so write some great new chapters for yourself and do it with my blessing andcontinued love for you and knowing you will always love me too.