I haven't gone back through the threads for awhile, so perhaps this was already commented on, but here goes.
DH has been in LTC for 16 months now. I visit every day, often at mealtime so I can walk with him afterwards and take him to the bathroom. He doesn't protest my leaving anymore, mostly because I learned how to distract him and then quietly slip away.
But when I see the forlorn and lost expression on his face, my heart just breaks for him. Although he doesn't often make eye contact, when he does it seems that he is pleading for me to do something, anything, to save him, to rescue him from the disease and the craziness of the place where he now lives.
Like Wolf I have slowly and painfully come to terms of some sort about the disease, my life, the loss. That haunting look he has, though, is something I cannot shake, or accept, or understand. He is a lost soul, and I think he knows it. His mind is being bricked up by plaque and it must be like being buried alive.
Does anyone else experience this? If so, how do you deal with it? Are there things I can do to comfort him other than holding his hand and rubbing his back and telling him everything is OK? I feel like I am going crazy from seeing this every day for the last 4 1/2 years. No, it IS making me crazy, sad and guilty, no matter that I know guilt has no place here.
Marche, it sounds like you are doing an excellent job of comforting your husband. Altho my husband has only been in placement for 16 months there is no way I can visit every day. It is far too depressing and then It takes me the rest of the time to recover emotionally once I leave. I know what you mean about the vacant look in the eyes. One thing that has helped me is that by not going so much he has made friends with a couple of the good aides and seems to get emotional support from them instead of always from me. I have also learned that the more we "let go" of feeling like we have to take care of them the easier it becomes for them and me. The taking care part changes as the disease progresses. In the beginning I thought that by visiting all the time, taking him out to restaurants etc was taking care of him. Now I no longer take him out or visit all the time and it is okay. It was more for me than him. I pray that this will be over sooner rather than later. The look in their eyes is part of the disease. Try not to connect that look with emotions although I know it is easier said than done. You are doing a fine job of dealing with everything and can be proud of that.
Marche, of course it does make us crazy and sad and guilty. How could it not? We don't get to see with objectivity though because we're so close and involved.
Neither do most. Some of the workers, the nurse I pay, and about half of all the friends and family see her as trapped in there as you said "bricked up by plaque and it must be like being buried alive".
Only it isn't. Think of a severely retarded child. The parents of that child probably know more than anyone that this is what goes on inside their child and there isn't anything else. Some though probably feel really badly about how that child must miss playing normally or playing sports or being accepted at school.
Well they don't at all. That's transference. I've joked that my wife wouldn't react if nuclear weapons went off beside her but the truth is she really doesn't react. So when the professionals talk about how she's looking forward to her sister coming to visit - it's all made up inside their heads. Dianne has no idea what a sister is or does and isn't bothered by that because those things aren't in her world of what she does know.
The hardest part for the patient IMO is early when weird things are happening in their head and they try to compensate and cope. That's why a lot of us (including me) have a story about somewhere when they seemed to drop a lot all at once. They lost the position they were holding about what was what because some event broke through that internal compensation.
It's us Marche in my opinion that have all the trouble letting go of what was and seeing the truth of what is. If my spouse was showing concern that she wasn't being normal like she did very early in the disease, I would know this is where the truly hard part FOR THEM is. When Dianne knew things were going wrong and she worried what would happen to her that is when she needed my support the most. In EOAD that period didn't last long and after that my job was to help her participate and then watch for her safety and needs and now make sure she's getting as good a care as we personally can get.
Your husband has a lost expression for a reason which is far, far more the cause than anywhere he might be. That statement becomes more and more true as time passes especially with EOAD but with all Alzheimer's.
What I believe you feel which all of us feel is the pain of what WE know is happening. A very few have different experiences where Nikki comes to mind. But that is rare because reasoning is so intricate where all the pieces have to be there and even in mid-AD stages that is likely to be seriously damaged and by damaged I mean it's not there anymore where you would need reasoning to know it is now absent. AD patients move to where they don't know that they're missing anything.
It is you that wants to save him from this disease because you love him and all of this feels so horrible because it actually is so horrible.
I would be willing to bet that if we could measure in some accurate way, your concerns about his state are fifty times his concerns about his state. If that's not true you can ask him and discuss it. And if he can't do that - it's you that is having the very difficult experience of accepting more what is happening.
Think of this as a bucket of cold water. My support and my sympathies are with you. There is one road ahead Marche. Try not to burden yourself with the idea that inside he's right as rain and is hoping you rescue him. That makes perfect sense that you think that (because you love him and want to save him) but it's almost certainly not real.
Don't get down on yourself. This is one of the hardest things in life. Your job is to find ways to get your feet on the ground and in the meantime to have some of that SAVE THEM thinking for yourself. THAT is what would surely be what your husband would be concerned about if he had that ability still.
Help him to cope. Help yourself to heal WHILE IT"S STILL GOING ON. Sorry. But that's the truth. And however true that is today it will become more true.
Marche, I too am having a very difficult time with my emotions. My DH has been in residence for 17 months now. I typically visit him every day, but have started to cut back to every other day because I am constantly in this deep sadness and need to crawl out of that hole and connect back with life again. If I'm lucky, I have another 20+ years to live. I want it to count for something.
I've also seen that lost look in his eyes and, like you, it devastates me. All I can do is make him feel my love while I'm there and leave him with a sunny smile and an "Ive got to go to work now". He sees that as our normal routine and accepts it. When I leave, I fight off the guilt and know I'm doing the best I can for him.
Wolf, I believe you've hit the nail on the head with your description of what is going on for our spouses living in a Community, as well as us, their caregivers. Thank you for your insight and advice.
marche, I remember that look you speak of, it is burnt into my heart. And I for one think that it means exactly what you think it does. Just hold him a little tighter when you see it, you are doing everything that is possible to help him. My very best wishes, cassie*
Myrtle, you said it so well. I feel very much like you do, but it's getting a little easier as I see he hardly knows me now. I really miss the man I knew before.
myrtle, Really lovely poem and expresses real feelings of an ALZ caregiver after placement. Thank you for posting it. I totally relate to days open wide but all I do is stay inside. You are a caring lady. ((Hugs))
Thanks, everyone. But you all know very well that this poem has many authors. All I did was to distill into a few words what so many of you have expressed on this message board and what I also feel.
Wolf, I could not ask for a better editor than you. I gnawed on that line like a dog on a bone but it never occurred to me to contract the verb. And the other problem was a typo. BTW, after you accused me of larceny in my first poem -- and it was larcenous, both in the subject matter and the appropriation of Robert's Frost's famous poem -- I decided to insert a stolen line or image into every poem. This one is in the last line of the first stanza.
Just wondering for some of the others who have placed their spouses, I am wondering how long it takes before You actually wanted to leave the house. It seems like I can manage my chores, working from home, exercise, and some family gatherings and visiting him. I cannot seem to motivate myself to get involved in anything except what I absolutely have to. I am grateful that I have maintained my health but I am thinking I will not be able to truly rejoin the land of the living until this is over. Do you just force yourself to do things? I still feel so under the umbrella of responsibility. I have tried a few things out of my comfort zone and it was okay but not something I would want to do again necessarily.
I placed my dh almost 15 mos. ago. I have been experiencing the same feelings as you. I do what is necessary, put on a semi-happy face, go through the motions and that is it. I think we have to get to the point of actually being contented or happy before things change. I really don't know if that will happen to me. I still feel guilty even though it was necessary for my own health that I place him. He doesn't know who I really am, just a familiar face. Doesn't know the kids. Never asked to go home because he didn't know where he was. His memory disappeared overnight.
I accept my life as it is and just pray that I outlive him so I can see to his care. Children all live out of state and it would be difficult for them.
Reading all the posts, I venture to say we will all get through this, some more scarred emotionally than others.
Shirley, thanks so much. It does help to know my feelings are shared by others. My husband still knows me but ask me the other day if I was married. They started him on trazadone to try to keep him from pacing all night. So far it seems to be hit or miss. Like you Shirley I wonder if I can ever get to the point of contentment. A lot of my guilt has gone. When I visit I do not stay as long as the last 2 times he has fallen asleep. Most of his speech is gibberish and trying to guess what he is saying is nearly impossible. My kids live locally but all have young families and do not really know how I am doing. Like you I go through the motions and smile. God bless
CO2 My situation is also very similar to yours. My husband recognizes me only as someone he knows. He has no concept of wife, marriage, children, or even his profession. His speech makes no sense and some days is all gibberish. The other day I showed him a picture of us on our wedding day and asked him who these people were. He had no idea and I am not even sure if he even knew the figures in the pictures were people.
I, too, have trouble getting out of the house. I have a few things I do every week that get me out but I have no desire to join groups or volunteer. It just takes too much emotional energy to commit. I understand that it is important to push ourselves to get out and do things, but I also have an innate feeling that freedom from commitment is something that helps me not feel as trapped by the situation.
I make lots of lists. Some days I blow through the lists and feel great. Other days the lists sit on the counter and collect coffee stains over days. Our kids care but they have no idea of what my life is like. They are in their early thirties, terrified that this Younger Onset is genetic, and busy trying to get their lives and careers figured out.
Adjusting to our new reality is a forward two steps, backward one step journey. If all you do is get up in the morning and look out the window - be kind to yourself because that is an accomplishment. While I find human interaction draining, I do find that NPR, books, the internet and movies are a great distraction. I look all sorts of interesting things up that I might, but probably won't do (like grafting new varieties on an old apple tree, sewing a tunic, making homemade rootbeer). Just researching these things and thinking that I could do them if I wanted to, makes me feel the most alive.
It sounds like we all suffer from the same spousal listlessness. Each person, though, will deal with it differently.
I think your right, spousal listlessness,I've read both of your threads and I had to look at the top to see if it was mine. I just don't know how to move forward. I have a dental appointment today and i just don't want to go out. I need some groceries, just small items but I used to love to go grocery shopping. I would look at all the ailes and see what was there that was different ut now i just go in get ot fast. It must be part of the diease. I cry everytime I leave from my visit to him. i just want to bring him home.
Marche, thanks for your input. What you said rang a bell that not committing to anything outside of what I have to do helps me to not feel so trapped. Understanding has helped. Today I did pretty good. Got up and worked, did some laundry and made it to wal-mart for a gift card for my grandson. I think I need to pat myself on the back more often and tell myself I am doing okay. I too have a lot of distractions--the Internet, love to knit, books and a few good friends although I do not really touch base with them that much. My one good friend got married. That was hard because she has a mother with the disease and was single. Now she is no longer single and is busy with her new life. Like you my kids are great but have no clue what I am going through but that is okay. They have young families and need to focus on that. Spousal listlessness--an excellent description.
Just checking in on a cold dark night, needing a few moments with like-minded souls. I could have written every word of marche's reply to CO2, except my husband is not as far down the road as hers is.
"I understand that it is important to push ourselves to get out and do things, but I also have an innate feeling that freedom from commitment is something that helps me not feel as trapped by the situation."
That's a very important thing to understand. It helped me a great deal to live knowing that 1) I actually am trapped in a situation which isn't just watching over my spouse - it defines my life right now, and 2) I have freedom to choose.
I came here to comment on something somewhat related but I want to say first how central that kind of thinking was to me in having a path open up. Sorry about your bad day. Don't get a SAD sunburn ;-D
I have a SAD light and it sits on the floor by my desk. Too lazy to plug it in. I tried going back on the meds and my head felt like cotton so I quit. Myrtle, I think we all have ways to escape and that is okay. Mine is knitting and my I pad.
I was thinking about my own spousal listlessness/life in an aquarium. I was thinking I need a better attitude.
That made me realize I didn't know what my attitude was actually. When I looked over my shoulder I realized that history wasn't a compass here. I made myself try and find a way of describing my attitude these last years. I wanted to pick 'survivor' as an attitude but I had to be honest and say 'victim'.
My over arcing attitude is that we are both victims of a disease which is taking everything we have to survive. I ended up settling on answering that my attitude is that I'm surviving being a victim (and that my spouse is not surviving being a victim).
It made me think about what an attitude is. I know that if we have one it defines us. I don't think everyone has one and I don't think that's necessary. I also know that attitude is not mood. It's more like a compass. Generally the way we see things and deal with them aligns with our attitude (if we have one).
For example take a kid in high school who decides they want to be better at something than they are. The first thing is they would have to remember the next morning that they want that. If it's a sport they would start taking their practise more seriously. They would approach it differently because they actually know they want something and are working for it. They would likely fall short at first and bear down more because failing in the normal past manner is now apparent and unwanted. So they develop an attitude which in this example is they work at what they now know they want more than a passing thought or fancy or ideal - they are living the effort.
I lived that with the easy example of laundry. Don't get it. Don't want to know (like many women with electronic wiring). I wasn't in turmoil - I had the attitude that it was time to learn so I read all the dials and I remembered my SIL saying don't over-soap and I knew about not mixing some colours and not overdrying because of shrinkage. That was it. Are dress shirts perma-press? No idea. Find out.
My point is that like the example of the student, I had come to my Waterloo and it was time to learn laundry and conquer laundry. That was my attitude. Now I don't even think about it. Although there was the one time I turned off the loud music thinking it was an earthquake we never get. Something horrible was happening downstairs and I raced down into the laundry room to find the washing machine doing a bucking bronco across the room. The cord was stretched tight and the outlet hose into the sink had popped out. It could have blasted dirty water all over the room including the furnace and the storage carboard boxes. I had put only jeans in and they bunched up on one side on the spin cycle I'm guessing.
Because my attitude became that I owned that job and it was time to learn it and that attitude means I can load the dryer, load the washer, and go fold things and put them away once I learned how long what takes.
I'm not saying that having the right attitude solves anything because there's no such thing. What I'm saying is that whenever you see anybody accomplishing anything or trying to do new things it's always because their attitude is already that they want to.
Wanting to be rich is not an attitude. It's a wish. Attitude is handling money differently now because we know we want to be richer. Like paying off double digit credit cards with a consolidated single digit line of credit and then searching what else they can do. Like anybody who doesn't want to get better at sports and instead works at getting better at sports.
On the other hand having centuries of time on my hand has allowed me to understand that yes I'm lonely but I can move in with my sister and I won't be lonely anymore so much as stir crazy (they're both aliens) but even then I won't have what I actually miss and crave so bad. Intimacy. Not the kind I can make a phone call for and have a short Irish transvestite with a hat or a student from one of the three universities in the area (don't pull away).
The kind of intimacy we honed and re honed together into a fine edge whether our relationship was abusive or submissive or equal or estatic - it's the intimate intricacies of that which is the need that gnaws at the limb no longer there (limb not being a sexual reference either). And no jokes lessen that.
Not even what I said to the psychiatrist when she asked me what my greatest worry is in meeting new women. "That my penis is too big." I answered without hesitation (delivery is everything). It was my only appointment but not for that reason.
No intimacy for Wolf. But attitude. I got your attitude right here. Come a little closer. I want to tell you something.
(full disclosure for the statisticians - Johnson is average)
Thanks Wolf. Great insight …. and also some great humor on a dreary winter day!
Myrtle, when exactly DID the French establish their colony on Algeria and how did that become something you had to research? I get the escapism though.
Because I've found myself either descending into the depths of this never-ending despair and grief, or bouncing off the walls in serious boredom, I signed up for a class at the local college. (First item on bucket list: Before I croak, I'm gonna get my college degree!) Today was my first class and I've successfully navigated the online site and other than getting lost finding the class, all was successful. One class a semester. I should finish my degree by the time I'm 90, if I'm lucky!
Today is a new day, which I'll try to make more productive. I think the cold dark weather is partly responsible for my problem. This winter is just killing me. I feel like I'm moving in slow motion with my eye half-closed. It was so icy yesterday that I could not bring the trash barrels back from the end of the driveway. They are sitting by the curb. I really have to take my hat of to you Canadians . . .
Fiona, Algeria - According to Wiki, France conquered Algeria in the early 1800s and established a colony there later in that century. Algeria gained independence from France in 1962, after the Algerian war. I was curious about this because of the recent terrorist incident in Paris. I knew that France had the largest MusIim population of any European county and figured that was because of its colonial activities in North Africa in the 1800s and early 1900s. I took international relations courses in college in the 1960s so I knew something about this but was very hazy about the details. I still am . . .
Ladies, notice that your attitude must have changed to open to new interests. Our moods move around even if we're normal but they swing around every day when we are spouses in residence. That's because we have time and are physically already living alone whereas the person who has them at home is up to their neck just as we once were.
My opinion is that I'm lucky I could do this even though it's like a pergatory in some ways. Or it would be like that if I was ready to immerse back into life and felt sort of held back. The truth is I get some breathing space where it's not me that's struggling to change her and try and keep going. I remember how draining that was.
It's not just my opinion - it's my attitude. I believe I'm fortunate to have this pergatory and all I have to do is think about REALLY bringing her home and doing everything myself. No. They can do better overall 24/7 and even though I struggle in this - I have no burden about whether I'm better off this way.
In taking steps to come back from the witch's brew of what being a dementia spouse does over the years (where the battle to watch over them and the worst ahead is still what we live because very few people rebound from such truly hard experiences quickly), I haven't found a strategy that stays or can be effectively managed.
Instead what I've found is that it's like disturbing the force and then being suprised by what falls out.
One day I remember something that happened starkly. Like the argument about just walking away from her leased Honda and leaving me to deal with it (before dimentia diagnosis and still hoping it was a depression from retiring). I made her deal with it. I felt sick when I remembered that but I've already done a lot of work and now I get to show you what I mean when I always say that. She had AD. We didn't know and I'm glad we didn't rush to find out. But that incident is blameless on both sides (that's my decision and my attitude) and if it comes back to mind it is already stamped with that mark as one of the costs to both of us from having AD. Another of my buried regrets decided.
I'm doing poorly at some things. I allow that right now in the same way that Marche above talked about allowing her own freedom from some committments. I also do that. But I still react rawly to potential hurt and I still dig for that potential hurt because my deep feelings are still raw.
But I do have an over-arcing attitude which I have come to believe and live in these last three years. And I have undeniable proof about it.
None of this is anyone's fault but I want to feel better and I want a full life. That's taking time which I no longer turmoil over - experience means I don't question that. But I look over my shoulder at 2012, 2013, and now 2014 in the books and every year is miles better overall than the year before.
It was only the second half of 2014 where my attitude changed about who had done what around me and I came to understand that I was now more concerned with deciding things and resolving them within myself which was utterly unconnected to whatever they did or didn't do. I was now caring more about my own life and future than what I'd survived in the past. As as result of that attitude which was now awakening inside me, everything around me changed.
One day you're just trying to breathe and the next you're considering a college degree or reading about French history. It doesn't flip the switch from unhappy to happy but it is what happens on the path.
The reason people who rarely get lost driving rarely get lost is because they look around and notice the landmarks. That's not necessary at all but it does mean you rarely get lost.
I'll be down hard again. I don't mind. I get back up. I want my life and those aren't words. I can feel that. And all I have to do is look over my shoulder and be honest to know that.
I know what you mean about suddenly being disturbed by a memory before diagnosis. I sometimes feel guilty for times such as my telling him he had towrite the Christmas cards to the family and watching him struggle to write and spell their names. I felt terrified by his inability but tried to tell him ( and believe it myself) that he hadn't been doing these things because I did. He was so frustrated and I refused to follow it.
Now, I wish I had a do over sometimes. Now, no longer at home , no longer speaking, no smiles, no hugs, ...sitting here alone tonight longing for him to be next to me.
This is harder than I ever imagined it could be. Tears streaming down my face.
I sent her out one day when she was ignoring her car (and driving mine instead) where the battery died and I told her she had to buy the new battery. She called two hours later and was lost. She had been to a number of places but wasn't sure where. I suddenly understood just how lost she was and told her to forget it and come home. That half hour waiting I spent trying to decide how long I would wait until I phoned the police. There was no dementia diagnosed by that time and the idea of her having depression was just beginning to seem like more. The full Dianne would never have behaved the way she was which wasn't black and white at all - but a number of things that all added up afterwards but not then.
I did worse. I got so frustrated sometimes wrestling with her for two hours to get her undressed, showered, and dressed again, I left her sitting on the bed and stormed out. Once she ended up tangled hopelessly in at least five or six tops and sweaters with others strewn all over the bedroom. The animal noises she was making because she couldn't figure it out burn in my brain.
But if I'm going to lash myself only that would be the most brutal behaviour. I helped her so many times and worked with her for a long time when she suddenly wondered how she would get home and that she really shouldn't be here with me like this and she was just wondering am I a musician? Each time my heart was in my throat at what I was living but I got us through those and many more. I waited patiently for minutes while she moved from the black square on the supermarket floor because she couldn't understand stepping on the white square just then. I went through so much by the end that every single professional cried to me and made sure I heard how highly they thought about how far I went. Dianne never knew she went into a home. On the other hand from diagnosis I resisted to placement was just 3 1/2 years with our lightning alzheimers.
So judge me. But not just the pages you tear out. All of it or nothing.
Wolf and Lorrie, you are not alone...I'll bet there's not one of us who doesn't have a similar type memory and regret. Particularly before a diagnosis was made. Looking back, years before his dx he'd turned into someone I didn't know or like. Those were very difficult times for us both and he was absolutely in total denial. Although I don't let guilt drive me, when I look back on those times I feel guilty about how I behaved sometimes.
True. But this is in the core of healing. That core is to stop victimhood from domination in our world view.
We are prisoners of torture by circumstance which doesn't alter that our descent into victimhood is brutal, deep, and over a long time. No blame, no details. Just the truth.
This discussion reminded me that I did Dianne's hair for many months. After the shower and the clean clothes I would bring her into the bathroom and sit her down on the throne and dry and brush out and then style her hair. I saw her numerous times with her eyes closed or with a look of pleasure. Someone fussing over and grooming us is a very deep sharing that goes right down through many of the animals. I had forgotten that.
My best friend is coming back from Florida today. He was down at another close friend's winter house. They both love playing golf. My best friend has his own problems he's trying to overcome; but, he didn't tell me he was going because he's not terribly deep in emotional intelligence (our feelings are not just about us but include the important people around us). He must have known I would call and find out he didn't bother to tell me.
Since I'm still a victim, I do exactly what I criticize him for. My feelings are just about me and in my mind I'm scolding him for disappointing me even in such a small thing.
Just the truth. I'm raw emotionally because of the decade I've been an almost constant victim of. I see things in terms of what others do to me and more honestly the fears of what they might do to me. That would normally sound too fragile but not when you've actually been tortured as a prisoner for years. Then it's an earned condition that would be good to heal.
So I never felt happy for him that he got to go or that I know that's good for both of them. I never felt genuine appreciation that our relationship is blossoming. Instead I imagined challenging him with his need to have me be spontaneous while he is not. I rarely get notice and he does not come out to me. But he stayed with me the night I put Dianne in three years ago. He came and stayed overnight at least weekly where he worked in seeing his mother then in a nearby town. He's invited me six times in the last year where I went once.
So the dominant mindset deep inside me is that he will turn on me. Everyone else has in one way or another including my sister who was always cheery when she called me until I mentioned Dianne and then she was suddenly at a funeral because she liked to forget this was happening.
It doesn't matter one bit what the subject or circumstances are. My trust hasn't just been brutalized; I've learned the hard way over years to expect what usually comes. I get hurt again by what others do and don't do. I think like a victim because I am one. And all of you share that with me or did.
What we don't understand is that while our spouse is progressively losing everything we are gaining clinical conditions by the process of reality. How we feel or see doesn't change that fact. Instead that fact changes how we feel and see.
The detailed example I'm sharing is happening right now. He comes back today and tonight our NBA team is playing in an exciting game. The odds of him phoning me are high. I was going to not answer and see how he likes my just not being there when he wants.
There is no more intimate or immediate example I could give of what I mean by actively helping my own patient which I've touched on many times. Just because I now do grasp one of the conditions my patient is in doesn't mean I expect him to jump up out of bed healed. This is going to take time.
I want to hear about his trip and how he liked it. He's insensitive by nature and I'm a victim right now by nature but we both invest in each other as we can. I have now shared the exact details of what I'm 'working' on right now. Not for any other reason except that someone has to help me and that is me.
Today I am also welding onto the car stories and storming out changing her, the many times I lovingly did her hair for her so she would look nice and how I could see right there in the mirror on her face how much she liked that.
Bite me Alzheimers. I will never stop kicking you. Not Dianne. Not me. You.
I feel very lonesome today. The realization that this is our life with him there and me here is so upfront today. I haven't been able to visit him for two weeks because of the flu on some of the floors. They did a great job of containing it to one area on one floor. It meant he had to stay in his area. That was very restricting for him as he has a strict ruitine and he gets antsy if he can't go where he likes to go. I have also been able to visit and take him out so now I am alone more and this is a problem as well. I'm have never been a social butterfly, I didn't need to as Keven was one. He loves people and would just walk up to people and introduce himself. He would chastise me for being stand offish as he called it. I am just shy and would eventually join in. With him not here to leed me I just don't step up and say anything. I spent so much time alone in my room when he was at home and at his worse that I feel bad and wish I could have him back here even if he where nasty. I would just like him home. Lately I feel that it is all about what I need and not what he needs. He has to be there and I really wish I could move forward for me and still give him all he needs as well, but I don't know how to do that.
Hi Jazzy, I've noticed that our "Caregiver with spouse in residence" group seems to be split into several subgroups. One group is composed of people who need to visit their spouses often and actually get energy from and are comforted by their visits. Another group seems to dread visiting their spouses and come away feeling worse than when they went. There are probably other groups, too. I suppose a lot of the differences between us have to do with how well our spouses have adjusted, how far along the disease has progressed, and things like that. I am part of the group that needs to see my husband often and gets comfort from just being in his presence. I don't know why that is. I suspect that you might be like that, too.
This forced two-week separation between you and Kevan due to the flu must be very hard for you. I completely sympathize. Although I don't need to see my husband every day, some days I really miss him and today was one of them. But I did not visit because we had an ice storm and were advised to stay off the roads. I think a lot of couples are like you and Kevan. One person is more outgoing and the other is shy, one person is more optimistic and the other is a little more pessimistic, and so forth. I know how hard it is when your other half is not there to balance your mood. In my own case, I am naturally a gloomy gus and my husband has always had a sunny personality. It's hard that he's often no longer able to pull me into his circle of happiness but I know he would want me to pull myself together, so I try to do that. Sadly, we are all in training for when our spouses will no longer be here to balance us. But we will do fine. So have faith.
Yes I am happy to spend time with him and this two weeks has been hard on me. He is doing fine and I am happy he is settled in so well. How long that will last one never knows. A few months ago he was moving out and taking care of himself. He is coming to stay overnight this week and I asked if he wants to stay one or two nights and he said one then he wants to go back. I think he gets frightened if he is away to long. I don't usually keep him overnight now but we have an appointment in the city two hours away and have to leave very early. I think I am having all the problems adjusting. I see what the disease is doing to us and to him but he seems to be indifferent to what is happening. This disease is a real robber, both to our relationships and lives but also to their ability to know what is happening to them. I am hoping he never realizes what will be happening and how bad it can get. He has had numerous small stokes and his Dr. Said he may have a massive one and I pray that if it happens that it will take him right then. I never thought I would pray for this to happen to him but I just don't want to see him end up unable to move, to just lay there captive to this disease. We sure are in training and I am failing the course.
Good heavens, Jazzy! You are not failing a course. Just look at all you have accomplished recently - moving to a new condo, learning how to adjust to your husband's changing states of mind, pulling an A+ on the wedding anniversary dinner, and so many other things I can't even remember.
And may I suggest that you try to stop thinking about death? Unless you plan to murder your husband or unless you have a direct line to God, you have no control over that event. I find that one of the most difficult things about being an Alzheimer's spouse is that in order to do our jobs, we must focus on aging, illness, infirmity, and death. Not happy subjects. So why think about death when we can't do anything about it anyway? Someone on another thread recently suggested that when grim thoughts overtake us, we try to think of something else. Maybe that would work.
Your so right, myrtle. I have start looking at something other then him and tonight I brought out my crochet hook and a beautiful deep red wool and started a granny square afghan. It will be made of all the different colours that I had in my wool box. All the same weight. The colours are all vibrant and deep shades of fall. I know it's spring but I have the wool so away I go. I am using the granny square pattern because I can finish one in an evening and I feel like I have accomplished something. We do focus on all the things you mentioned and I guess I need to get up off my butt and try to live again. I have a long time friend who lives about two hours away that will be coming to visit it February. Her hubby and Kevan were great friends but he died four days after a heart transplant in 2005. Kevan really started to show symtoms after that. He and his friend did everything together. She is remarried now and he is starting to have health problems. Dementia doesn't just take away your partner it works on taking you away as well. I wish we had more help to motivate us. I had a great councillor when Kevan lived at home but when he went to LTC I was not able to see her anymore as he was not being cared for by them anymore so out I went. Government rules.
Wow. That is really awful about the counselor. When you're dealing with people in that kind of profession, you can't just arbitrarily substitute one person for another. Your afghan sound lovely and the process is even better - one square at a time. I completely understand when people say that they wish their spouse will have a quick and easy death, but it bothers me when I then hear them say that they feel guilty or sad for thinking that, etc., etc. This is hard enough without looking for things to feel sad or guilty about.
Here is an interesting story. Late Saturday afternoon, as I was leaving my husband's facility, I stopped in a restroom off the lobby. In the hallway I came across a man who was leaning against the wall. He could hardly stand up and said he did not know where he was. He said he was trying to visit his brother who was a resident. I helped him to walk out to the lobby and sat him in a chair and asked the receptionist to call security or the nursing staff. She said that since he said he was not a resident, she did not think there was anything she could do! I said, "Well, I'm just a private citizen - do you expect me to put him in my car and take him home?" That got her motivated and it turns out the man (not his brother) was a resident but he didn't realize it. What on earth was that receptionist thinking? This facility has full-time security guards who make the rounds constantly. And it was really cold (in the single digits) and windy and almost dark.
That receptionist needs to be retrained. At Kevan's LTC I have seen the receptionist run outside to bring a resident back because it was cold and he didn't have his coat on. When he refused to return she called security and his floor. Kevan is astounded by the fact that everyone he meets says" hi Kevan" he says " how do they know me ? There are 243 residents." I think that everyone staff member should able to recognize a resident. Their safety depends on it.
I've already made two square. Only 54 to go!!! My Willy is upset because it leaves him to entertain himself.
I hope you get to see your hubby today. I am waiting to hear if they have removed the visiting restrictions from Kevan's LTC today. The was this morning.
Well his ALF called today and they want to transfer him to a nursing home. they say they cannot provide the care he needs. They are decreasing their staffing due to change in ownership. There is a nursing home on the grounds of the ALF so am thinking this will be the easiest for me as opposed to calling and trying to visit all new facilities. Has anyone has this experience? He is still walking. I think part of it is he follows the aids around and does not sit most of the day like the other residents. Also the other day he started undressing in the middle of the community room. I would like him to remain in a dementia unit somewhere and am not sure their nursing home offers this. It is just all the stress to have to deal with this again. Hugs to all
Oh, CO2, I'm so sorry! If it's a good nursing home there on the same grounds, it seems to me that would be best for you and for him. My goodness, people in my husband's dementia care center undress all the time in public areas. I guess we're lucky that I found a place that seems to accept all kinds of behavior without freaking out. Last week my husband bit a student nurse on the boob! What the hell?? She was great about it, has a wonderful sense of humor, and my husband wasn't at all aggressive or threatening, she said. I had to laugh - how can being bitten on the boob NOT be threatening? Well, she said, he didn't leave marks or anything.
I would like to relate a funny story about one of the caregivers at my husband's residence (please forgive me if I've already told this one) - the caregiver's husband just got back from Afghanistan (he's in the USMC) and she wanted to show him where she works. She warned him that he might see some crazy stuff there - then they turned the corner and one of the little lady residents walked up stark naked! Of course, everyone ran and got her and took care of her immediately, but his reaction was priceless - he turned to his wife and said, "I would rather go back to Afghanistan than do what you do!". Most days that's how I feel about dealing with my husband's dementia. I'd rather go back to Afghanistan than have to deal with the torrent of emotions I live with every day. And I've never been to Afghanistan.
CO2, I am so very sorry you have to contend with this challenge. Do they say why they think he needs a nursing home rather than an ALF? My husband was undressing, but I bought him those one-piece outfits that zip up the back, which eliminated that problem. If your DH is still walking and following aides, could it be that he's bored and does not have enough activities to keep him engaged/involved? I agree with you that while he's still walking and trying to interact, a dementia unit would be better than a nursing home. The best of luck as you work through this new issue. I will keep you in my thoughts.
joni1957 andFiona 68, thank you so much for your kind words. It helps a lot. I think he probably is bored but does not seem to have the capacity to engage in the activities. He can no longer read or seem able to focus very long on anything. His eyesight is also very poor. He can look at something and not see it or know what it is. He enjoys listening to people talk but when he tries to be social and engage in conversation he makes no sense. I am going to make a few calls today. I do not think the nursing home there has a dementia unit and I do believe that is what he needs. He paces a lot and needs a secure unit. The place where he is staying was recently sold and they are cutting back on staff which is part of it as they told me they do not have the staff to handle his needs. There are only 2 aids on his floor that really give him good quality care. The rest seem to be mostly babysitters who basically do the minimum. I think this move will be hard for him as we know change is difficult for,them. All I can do is my best and leave the rest to the Good Lord
Four months ago today my husband was placed in residence. I've tried so hard to be okay with my new normal. Recently I reopened my eBay store, so I wouldn't sit around crying. Today I needed to move some of the inventory into our back workroom, a place I've avoided because it's where we always worked together. Some of the projects we were working on when he had his last fall are still there, waiting for us both to finish them. My heart broke in places that I didn't even know I had, and I started sobbing. Then the hospice nurse called me and said Amir started crying and they couldn't get him to stop. I sobbed on the phone and finally had to just hang up. I'm falling apart, and I don't understand how this happened. Six months ago we were painting patio furniture together and fixing an antique floor lamp. Okay, I was doing most of it, but he was here, and that's all the mattered. Now he's not here, and I can't get it through my head. I can't figure out the decline being so fast and scary. I miss him. I want to go where he is and drag him back home and try to hold him from going into the abyss that awaits him. This is the most distraught I've been through this whole terrible experience. Time isn't healing these wounds. I seem to be getting worse, just as he is. I want him back.
Joni1957, try to take a deep breath. My husband has been placed for 17 months and I am still crying. I have crying days and days when I am able to function. I think for me when he was home I was so busy that I stuffed my feelings and they are just now coming out. It is a journey learning to be single again. I am in the process of finding another facility as the place where he is cannot meet his needs Anymore. Took him to the doctor yesterday and he has bronchitis and they found a lung nodule with a chest X-ray. He has a long history of smoking so the chances are pretty good it is cancer but the doctor said we are not treating it and putting him through all the medical procedures. What you are going through sounds pretty normal to me. We are all here for you. Try to be kind to yourself
Joni1957, I am so sorry for you acute pain. Mine, too, was just placed 3 months ago and was still walking with assistance and talking well just 3 weeks ago. It is BRUTAL just how fast they decline. There is not a single thing we can do to stave it off...just be there to love on them, hold their hands and make sure that they know they are not and never will be alone in that "abyss" that pulls them away from us. Again, so sad for you!!!
My husband was placed five months ago. When I went to visit him today, he was sleeping in his wheelchair. Aide said his body was stiff all day...hard to bend his knee to get him in wheelchair. He wouldn't or couldn't sit up straight. Five months ago, he was walking and 20 lbs more. I can't believe his quick decline. He was diagnosed in 2012 at about stage 4. Now I feel he has entered stage 7. How can this be??
They were singing old songs today while I sat with my sleeping husband. I could not hold back the tears. I had to leave and cried all the way home.
I want him back too! I want Alzheimer to be just a very bad dream.