What a testimony to love your grandson is! You must be more than proud.
You said: " These photos are hung on each side of the window, and staff have commented that they are touched by the photos."
My husband's placement in ALF was "hurry up and wait" because he was being discharged from rehab. Even so, I had enough time to add some of his favorite art pieces, photos, etc. to the walls. Because he was used to seeing them in his office I added some framed photos, diplomas, license, and such to the walls. My main goal was to make him comfortable and familiar, as much as possible. I had asked if putting these professionally related items was a bit much, but the director could not have been more supportive.
She said she strongly felt that not only would those items be reassuring to him, but they personalized him to the staff. She said it was good for them to know that he had a past as a person in addition to being a patient. There was also a photo of him with a well-known person and that sparked not only interest among the staff but their conversation with my husband as well.
Those of your husband and grandson sound wonderful. Sending you my best wishes as well.
I have been reading your posts over the last few months, and just wanted to send my good wishes to you and your beloved husband.
Your last entry really made the tears come full force. I am not sure what triggered the flow, but the story of the pictures was beautiful. I think you are doing a wonderful job. Take care.
Have any of you heard the saying that 'Repaid' spelled backwards is 'Diaper'? This touched me when a friend sent it. May be sentimental, but it rings a bell for us.
Nikki, LFL, Abby, Fiona, Moon and all, An update – staff said that this morning he was asking where I was, when I would be coming, etc., but he was not overly upset – a positive! One PSW said he was able to hold his toast, but she helped him with his cereal and eggs. I arrived before lunch, and although he asked “Where were you?”, he had no tears. I was there for lunch (but always eat supper with him). He seems to have a lot more difficulty handling his spoon, and really needs guidance, but, thankfully, has a great appetite. He was calm all afternoon; the physio had him down to try out the bike for 5 minutes – he was, in his previous life, always very fit and active; he was looking forward to this – got on the bike for about 4 minutes, and it showed his right leg needs strengthening, but he tried, and, with praise and encouragement, felt good about himself, and is looking forward to improving. He needs the challenge. We met a few of the other patients (I do all the talking (surprise!!)), who were warm and friendly. We played Bingo (in his other life he would have said ‘no way will I play Bingo!’). Couldn’t follow, but was there, and calm. Later, he began speaking in his dialect, and I could not understand most of what he was saying – just knowing him, and understanding a few words and gestures, plus a few “No Way’s!” in English, I came to understand that everything had to go … no more dressers, no night tables, no pictures, etc. ‘No Way!”. He had a right to say what would happen! I went along with it. He ‘got over it’, and the staff have been kind and supportive … even though they do not always understand what he’s saying …they have been gentle in handling him, and it has made a huge difference. When I left about 8:30 p.m. (after night meds) he was calm and ready for sleep. Such a relief to have no tears or anxiety. I truly believe that his ‘history, current situation, etc., fears, etc.’ have been so helpful. The social worker phoned tonight to say that he had visited him early this morning, found the history, etc. will definitely have an impact on how they would deal with him, and while DH could not express much verbally, they were open, at any time to meet and discuss anything. Very warm and friendly. At the moment, I am feeling very positive about this move. Hope I am not being boring … and wishing all of you the best!
Abby, Thank you for letting us know how you dealt with making your husband’s room in ALF feel as comfortable and familiar to him as possible during what must have been a very difficult time for him and for you.
‘She said she strongly felt that not only would those items be reassuring to him, but they personalized him to the staff. She said it was good for them to know that he had a past as a person in addition to being a patient. There was also a photo of him with a well-known person and that sparked not only interest among the staff but their conversation with my husband as well.’ So, no regrets, right? It surely must have been a great comfort for your husband.
I took a large frame, and within it I placed old photos of DHs grandparents’ generation, parents’ generation, his early years and his military service. Staff members have been quite interested in the picture, mention how handsome he looked in uniform, etc. One PSW said that, on their wards there are patients who can be abusive, verbally and physically, but then they remember that this person would not, in their normal life, have acted in this way. She said that you would have to just look at this photo, and see the person as he was in his early days, and have compassion, understanding, and deal more gently with them. Thanks for sharing, Abby, and sending best wishes back to you.
Marg, I am so relieved to hear your dear husband is responding better, whew!! I know this brings a measure of comfort to you! I absolutely feel it is important to give a history to the staff, we are ALL individuals who have different needs....learning as much as they can about their resident gives them a much better chance of being able to help them transition. The key is finding a place that will treat them as individuals and want to listen to the spouse, who after all knows their spouse better than anyone. It sounds like you have found a wonderful home for your husband!
Like LFL, my eyes got teary when I imagined the pictures side by side of your grandson and husband... so very touching!! And no, I had never heard of the "diaper, repaid"...but it does hit a chord doesn't it!!
Please do keep us posted, we truly do care ((hugs))
I am interested in finding out from others who have placed their spouses before me how the progression of the disease has gone. I know no one can predict as everyone is different. But it may help to provide some answers for me. Have they declined more mentally or physically or both since placement? Would you say it is slower, faster or about the same as when they were home? My husband has been in placement for about 9 months. He has declined mentally and his eye sight seems worse. Physically he has been stable except for difficulty maintaining his weight. He is on an anti anxiety medication which I had requested when I first placed him and it has made him more or less like a zombie that never questions anything. I am grateful he is not agitated and am wondering if he still needs this medication. He seems to have adjusted to placement but like I said is more or less of a zombie. Thanks
Could you talk it over with his doctor? He'd probably decrease it gradually for your husband, which would allow for adjustments if necessary. I personally think the fewer medications, the better.
Physically my wife is better. She is better in some cognitive aspects, worse in others. Some people report continued decline after placement (after all, they were placed because they were declining), others report some improvements because of the structure and care in the ALF.
Talk with his doctor about the medication. It may no longer be needed or switched to something else with lesser or different side effects. Let the ALF know of any med changes so they are prepared.
C)2 ...It's now more than 9 months since Clare was placed in her ALF. Her decline has continued, slowly but surely, but I'd say at about the same rate as when she was home. Losing weight was an issue for her, too ... she lost 25 pounds in the first 6 months. I then started to personally select all of her lunch and dinner entrees, and now she is eating better ... not all the time, but more often. I also now take her out to eat 2-3 times a week, and she usually eats better when with me. She is also now taking one Ensure daily. This combination of changes has resulted in her gaining back 6 lbs. and her weight has now stabilized. Her latest change is fatigue ... she is tired all the time now and has started going to sleep aboot 3 hours earlier than when she entered the ALF.
You and I placed our husbands at the same time. Unlike many of your spouses, Sid is in a Nursing home, not an assisted living. Since placement, he is physically better. All of his physical needs are met. He doesn't have to struggle to try to do anything for himself. He does do what he can for himself, but there is an aide right by his side to do what he cannot. He is never rushed. The doctor is on his unit at least 3 times a week. Everyone who sees him tells me how good he looks.
Mentally, he has steadily declined. I know he would have declined at home, but I don't know if it would have been at a slower pace than in the NH. At Day Care, he had peers on his level with whom he could interact and be social. In the NH, everyone on his unit is much lower functioning than he is.
There is no way to tell how much more or less the decline would have been if they had remained at home.
I'm new to this site and am posting here because I have signed up my husband for admission to the dementia unit of a nearby facility. He is in excellent physical shape and has always been active. I'm worried about how he will adjust. He is used to being around other people since he goes to day care. He is very sweet, trusting, and friendly and will go off with anyone who is nice to him. A care manager said there is nothing I can do because telling him in advance would just upset him. So I guess when they call me to say they have a space for him, I'll just bring him over there. I would appreciate any advice you have.
HI myrtle welcome to our site. There are MANY threads and advice on things that help with placement, and in fact, if you start at the beginning of this one you will find alot of comfort, and suggestions. You will also find alot of pain, but most times as time goes by, you will also see healing and acceptance.
It was hard for all of us, and heartbreaking. I know you will find though, that eventually things will settle down, and as though sadly you will see decline, you will see that you did what you had to do.
That may be the single hardest day. You just have to steel yourself up for it and go through it. Remember that you can't go on giving him what he needs and is going to need and if you have some respite you will be less run down and can ensure he has good care.
You're going to feel very guilty. It's a tough thing to face. But starting to learn how to be home by yourself is tough too and some of the strength and wear you save is going to be needed to help you get used to that.
Hi Myrtle, I do not believe there is any way to prepare for the move. I did tell my husband and kept him informed throughout the process but of course I was on a wait list for 9 months so by the time the move time actually came, I doubt he thought it would happen. I had my children help me move furniture the weekend before and had all his clothes in place. On the actual move day, I actually felt sort of numb. I knew what I had to do, and I just put him in the car and drove him there. I arrived at lunch time so they had food for him. I remember the very scared look on his face but I left as they suggested. The first few days were the worst as he was constantly calling for me and his anxiety escalated to where they sent him to the hospital for chest pain. They told me that it takes about 6 weeks to adjust and that was probably about right in our case. Wolf is right in that learning to be alone and live by yourself will take strength and endurance. I do believe that placement is probably harder on the caregiver than the patient because all their needs are met but the caregiver is left to find support elsewhere. One thing the Alz Association told me to beware of is not to identify with your loved ones feeling. In other words if you see them depressed or anxious, do not take in those emotions. I did that some but it was good that I was aware of what was happening. You will feel guilty. People will tell you not to feel guilty but I do not think it is possible to not feel any guilt. I would tell myself that I had nothing to feel guilty about but I still felt it anyway. As time has gone on, the guilt comes much less often. I know he is well taken care of and I need not worry about his care. Giving up their care is a process or at least it was for me. It takes time and having a lot of patience with yourself. I made the mistake in the beginning of visiting too often. It was exhausting and was not helpful to either of us. I know have a visit schedule and it seems to be right for me. You will need to determine that for yourself as to how often to visit. I felt if I visited every day that I would not have time or energy to focus on moving on with my life which is task we all must face. Keep in touch and glad you are here.
Thank you all for your advice. I did go back and read a lot of messages. I realized that if so many other people were able to do this, I would be, too. But it was troubling to see that many people’s spouses did not adjust well and were frightened and angry and cried and begged to go home. The only thing I am hanging onto is that the nurse who assessed my husband a few months ago said he thought my husband “would do very well here.” That had not occurred to me, so it gave me some hope that he might even be happy there. I don’t know when this will happen. We are waiting for a space to open up. I’ll let you know how it goes.
myrtle, just a thought....if you/he is not ready to go into LTC when they call you, you can always asked to be skipped and the next in line will be called. You shouldn't lose your top spot until at least 6 months, but I would call and ask the facility if your husband's name comes up and you're not ready, how long will they keep him in the top spot. For us it was a year....even after a year I wasn't ready to put him in the facility, so I lost his place and will need to reapply when I'm (or he) is ready. He"s still home but I have 24/7 care.
Thank you all for your advice and encouragement. It’s been ten days since my husband was admitted to the LTC facility. He seems to be doing OK. I’m having a hard time now that he is no longer with me. The first few days were the hardest. I still miss him terribly at night, when I am used to him being at home with me. But I’m gradually adjusting and think that I will be OK as long as I am sure he is well taken care of and content. In the last week, I have been doing some heavy-duty sleeping and I am not under constant stress. I’ve started to feel a little bit better physically. At some point I may be able to make some plans that do not involve him. But for now, I’m trying to make my days productive, sleep as much as I can at night, and make my visits as happy as possible for both of us.
myrtle, the adjustment will be difficult but it's a good sign that you're able to "catch-up" on your sleep and are feeling better physically and not feeling the "constant stress". A positive attitude goes a long way and remember you are still his advocate and caregiver but now you have help!
myrtle, I am so happy that you are finally getting some rest. I placed my husband about 9 months ago and I am still adjusting but it is certainly better than it was. You will adjust. It just takes time. I have not made too many plans without him but I am planning a trip out west in the fall to see a friend. A year ago I never dreamed that something like this would even be possible. It is amazing to me what a new and different thing it is to finally be focusing on ourselves instead of their needs. God bless e
LFL and CO2, Thank you so much for your kind words. One of these days I’m sure I’ll be able to widen my horizons but right now I’m grateful that part of this crushing burden has been lifted from my shoulders.
I have been doing some serious sleeping since my husband went into LTC. When he was at home, I would set the alarm so I could get up before he did and make sure he did not escape. Now I rarely set the alarm. This morning, I got up earlier than usual – 6:00 a.m. – and after a cup of coffee, I went back to bed and slept until 10:00. I felt so good when I woke up.
I simply cannot get my mind around the reality that my husband is not living with me in our house. When I visit him, I have to push that thought away and work to maintain my composure. He ways glad to see me. I present a cheerful face to him and we either go to the recreation room or I take him for a ride.
Myrtle, it sounds like you are making excellent progress since placing your husband. Sleep is so vital for our Heath. Even tho my husband was not wandering he still would get up at night and I realized since placing him that I just sleep better now. I too work from hOme and am finally able to focus more on work rather than dealing with him. He would interrupt me constantly when he was home. I too have to push guilty thoughts from my mind when I visit and even now 9 months later a tape goes off in my head that says "he is not so bad or you could have kept him home longer." I actually love the quiet house that I now have. I visit him 2 times a week and on the weekend I take him out usually to a family function or something. These outings exhaust me but I will do it as long as he can still walk. Keep up the good work. Again you are doing very well indeed. Taking care of ourselves is a definite process and does not happen quickly and is unique to each person. God bless
There was a film done some years ago and in it a woman is given seconds to decide which of her two children will survive and which will be killed. It's a horrific scene. We know about horrific scenes or we would be the last people reading this board.
There is an aspect of that which in my opinion relates to us.
That story portrayed the idea the woman had a choice and that one of her children was killed because of that choice. That is both correct and wrong. One of her children was saved where the idea she actually chose is disgusting. Her choice was to react quickly to save one. Which one was one drop in an ocean.
Making a choice like that would scar anyone for life. The thing such an image has is immediacy of drama. It's right here now and everything swings in a moment. The only difference between that deep scar and our scars is that it takes torture for years to get ours and that it is in our weakest state that we face our own choice.
Alzheimer's/dementia scars the spouse deeply in serious ways. The importance of realizing this as our underlying state is the same as the patient who has had a serious condition and needs to take concious steps to heal - but refuses to believe it.
If we have a spouse in a home then we cannot possibly be normal in many of the very important ways we ourselves would define that. And we have no more choice than Sophie did. We can save one. And just as it all happened to her in one moment it's crueler to us in that we endure harsh treatment for so long we see it as our permanent state. Sophie was normal before that horrific moment happened. We get to turn on the spit for years first.
Our beliefs turn on these things just as these things turn on our beliefs. Whatever our feelings are now they will change with time and it matters that Sophie would have come to some terms with the horrific scars of what happened; but, that what really counts is that she saved one. In her case it didn't matter which one which is where that story falls down to dramatic narrative.
Saving the spouse by realizing there is clinical damage and it can be healed with time and will to become whole again is no different in my mind from saving one of those children in that someone gets to live.
We don't have to make Sophie's choice. We have to help ourselves understand we can't possibly be today what we will be in the future because of the very real and powerful effects of the disease on the spouse and that we are still in that. A little kindness and understanding for the patient helps in the healing process. Everyone knows that unless you're busy being turned on a spit.
Thank you Wolf. I have learned you do not appreciate compliments on your writing. I understand. I do need to say though I found these words so insightful and helpful. I printed them off to read several times.
Katherine, I don't mean to sound that way. The real truth is of course that everyone loves compliments. Hearing that something I said has found resonance in you is very gratifying.
When we are at the home seeing them it is about the reality of their condition and needs. There is our partner and the reality of the connection to our past and there also is the reality of what the disease is still doing to them now. When we come home our partner is not here and we are meant to get on with things without them. That's a duality of meaning in conflict.
Most people don't switch their deepest emotions on and off although some people are better at that than shock or grief are.
So the duality of healing here addresses the truth that we need to find ways to settle into a reality we don't want while the over arcing reality is that things are actually getting worse at the same time. Getting used to being alone while we're in fact still married. Learning to feel better in the time we have while they are dying.
When we have a spouse in a residence that's what we face. At the very first grief and shock and realization and other reactions are rampant. At some point we know we should or want to move towards dealing with our lives beyond reacting to or solving the item of the day/moment.
This is a serious challenge. Invent a new life. Invent new feelings. Invent new interests. Realize our thoughts. Realize our feelings. Discover the undiscovered country where you don't get to start at the starting line - you must start from way behind because if Alzheimers/dementia doesn't damage a person mentally and emotionally they might be a psychopath where a psychopath has neither the turmoil of emotions within nor the guidance and rewards they provide.
It helped me to analyze that it's a longer road. It helped me to protect myself early knowing I was going to get better through time alone. It helped me to be serious that I had to be unhealthy mentally and needed to believe that firstly and help myself secondly by pushing off big decisions early if I could and keeping my world smaller (safer) during that time.
It was kangaroo court at the insane asylum there for a while. I'm not joking. I was mentally out there and it took willpower to not only remember all the pieces but try not to get lost in all the pieces. After a few months I walked around at home unaware that I had ever been married and then being swept away by the horrors and then having dinner quietly in a trance again. Carosi and I talked about that at length. Because of Alzheimers/dementia we become very good at insulation and isolation and those skills don't skip a beat because we put them into a home.
It takes time to come to realize and work with the duality of healing because we need to get over post traumatic stress disorder to name one condition that may very well apply for a while. Many of us begin grieving when we place them. We have bottled up our own identities for years. We have lived under stress without hope for years. And now it's time to be cheerful, sing songs around the campfire, and embrace the horror.
If you think those three things are odd to put together then I'm not reaching you. Taking steps to enjoy life while they die is nuts beyond hollywoood's wet dreams. Using a hero that can hardly stand up right now is brilliant. Put pathos, tragedy, and slapstick into a blender and mix.
Give yourself a break, a breather, a moment, a tear. This is hard for real human beings with real emotions and that is an understatement.
If you want to transform your life in some way be my guest. Most don't. They will come down this path I have been down where the empty chair transforms into a chair and the betrayers become ordinary and it's ok that I look for, find, and believe in my own moments and because I do look and want - I find. Even while she is in the nursing home dying. Not today though. Today I fed her ravioli and icecream.
I don't believe in the fuzzy veils of words like normal or accept. My job is to enjoy my life while my wife is dying. It's nuts but both sides of this duality are truth...so
"I don't believe in the fuzzy veils of words like normal or accept. My job is to enjoy my life while my wife is dying. It's nuts but both sides of this duality are truth...so"
So true.
"They will come down this path"
When I think of this "path" I envision now walking it with the quiet knowledge of many of how fragile life is. How I now stand back and watch the many enjoyable moments others are enjoying with their families and hope they can understand just how precision they are and embrace it being fully in the moment not being distracted by the rest of life noises.
Even though life goes on "I" am still in some areas numb and sad but it is true time heals all but every time I go to the NH and visit him it's like the scab being ripped off and the wound be reopened. So I find that when he calls me multiple times in the evening that sometimes I unplug the phone so I can have just one night not thinking about how life has turned out. And I don't visit him that often because again I just get sad.....I would like to not be sad for a while. It isn't fair to him how his life has turn out ending this way and he is now stuck there. Truly a poor ending to such a full life.
"sometimes I unplug the phone so I can have just one night not thinking about how life has turned out. And I don't visit him that often because again I just get sad.....I would like to not be sad for a while. It isn't fair to him how his life has turn out ending this way and he is now stuck there. Truly a poor ending to such a full life. "
Amber, never forget that while you see it this way your husband if he were granted the ability would only see what you have suffered for him and how you continue to suffer from this.
Just as we are learning to re-open our hearts to the things around us which shows us that as we move down the path we change - keep in mind we are trying to get you safely into an ok normal. That is this partnership's only hope of getting one out 'alive'.
I'm still wrapped in the saddness but my days continue to improve with time and experience. I believe I'm on the right road for me and can write a hundred examples as to why I can prove that to myself.
More importantly, the air coming out of the balloon of Alzheimer's over time and the accumulation of experiences and moments and realizations during that time shift the nature of the general 'mood'. I'm not fixated on who did what which seemed of paramount importance a few years ago because I'm genuinely more engaged with my own life. I think the effects generally are gradual like an accumulation and I know from talking and read above you are experiencing the things I'm talking about. As we go down that road of finding ourselves further our outlook changes.
Do small things. Like look around at the day and find something you can appreciate. Pollyanna doesn't work for me but as Ferris Bueller rightly said, "You've got to look around once in a while or you could miss it."
Wolf...wonderful postings for my heart and soul. Sometimes I wonder just why we can feel so much the same, being different people, different locales, and different sexes. Your words are my words, my thought, my pain, my hope. Pollyanna is who I have often been. Don't want to. Don't want to be the martyr.
I will say though dear friend, that through this all, seeing what I have been able to accomplish and bear and then keep going in for more, I feel very much more likeable and respect for myself, from ME! I have the attitude now, that if anyone tries to cross me , it will be so simple to just say #!!&&& off! I have done it all right, all correct, to the very limits of my ableness. (word?)
Yesterday a girlfriend drove to my town visit with me, to save me some driving for the three times a week journey. Also she felt some company would be good for me. All kind and sweet and I am glad we did it....EXCEPT..she encouraged me to talk about my deepest feelings, as she is happily married to a very kind man and just wanted to KNOW.
Well when I got home, I cried and cried after she dropped me off and had horrible nightmares, so sometimes I think this being stoic is better for the time being.
and...because my schedule was thrown off, I FORGOT TO BUY COFFEE AND CREAMER ARRRGGGHHHH!! I did have some yucky instant. Off to the store now.
Dear Wolf, Amber, and Coco. I do not have words to add as I am really down in the dumps these days. I did want to say how your words are indeed my words. Thank you for having the energy to formulate your thoughts and post throughout this site. As we have often read, no one but us understands what our journey is like.
"....EXCEPT..she encouraged me to talk about my deepest feelings, as she is happily married to a very kind man and just wanted to KNOW.
Well when I got home, I cried and cried after she dropped me off and had horrible nightmares, so sometimes I think this being stoic is better for the time being."
I've had instances where people will ask me how I'm doing and my usual answer is "Still standing" Then they'll stare at me wanting more and I just have nothing more to say because I know they don't understand what I'm going through and a lot of times they are just looking for gossip so they can pass it on to others. I have no desire to be the person gossiped about in this small community. I too find it best to be stoic and not ....in my thinking...waste my time talking to people that just can't get it because they have never lived it. Plus I just don't want to rehash things I've already gone through and dealt with the best I can. If you want to help me come and give me a hand sorting through all the stuff I have in the out buildings or help me finish my renovations or help me bring in this years firewood or....... I've been walking this walk alone and I can finish it alone and with the people here wonderful help in cyber space.
"Amber, never forget that while you see it this way your husband if he were granted the ability would only see what you have suffered for him and how you continue to suffer from this."
While I intellectually understand this it doesn't stop it from all stinking big time.
"Just as we are learning to re-open our hearts to the things around us which shows us that as we move down the path we change - keep in mind we are trying to get you safely into an ok normal. That is this partnership's only hope of getting one out 'alive'."
Did you ever, even in your wildest thoughts about your marriage, think it would end up where you goal is to come out 'alive'. It all just seems so surreal sometimes but then you give your head a shake and here we are.
I hate to say it but I sometime wish it would end for his well being....he doesn't want to become or have us remember him as a drooling nothing...and mine, I don't want to end up being this withered, stressed out, bitter woman. Even though having him in care has been easier on me physically but the mental and emotional toll is still there. Now when someone says you should get out and meet someone the first thing I think of is what if he ends up getting sick and I have to do this all over....I just don't have it me to do again plus I would be sooo picky looking at his life style and his family health history to try to figure out what he might come down with in his old age. So unrealistic.
And the big plus is I actually like living alone, being ones own boss and answering to none other but oneself.
One of the best things going on in my life right now is nothing. And one of the things I'm looking forward to is nothing.
When I finally went to eat in a restaurant by myself it wasn't anything - it was nothing. When I finally took my christmas tree down it wasn't anything - it was nothing. When I finally put a real garden in the front of the house where last year I bought flowers late, I kept them in my garage for over a week, I didn't tend them, and I didn't give a crap because I was just doing it for her - it was nothing. I've been out every day watering them and they look healthy in every way and are a riot of colour but it isn't anything.
What I want to do is kill something and feel it's lifeforce draining in my fingers. We don't talk about the rage and women love to pretend they're above it - but I know different. So I say it where no one else does. You have rage inside every one of you and I'm not really interested in responses to that. It's blocked out - I get it.
We like to say 'resentment' and even 'anger' for example at what people have and haven't done and said around us. My treatment by many around me I should have been able to trust was nothing but cruel. Oh it wasn't cruel anymore than we feel rage; but, if we hear what is done to others by others - then we know immediately it isn't just self serving and shallow - it's actually cruel.
Don't worry. Society excuses them and society will close ranks around them. The many versus the few.
Al Zheimer doesn't exist. It is the mythology humans use to comfort that random events have meaning suprisingly almost always based on answers they want and want to believe exist. I've used that here as the beast I am fighting in this valley mythology. The truth is it's a protein buildup almost certainly caused by some gene combination not yet discovered and other than that is itself nothing.
Which is what you and I will be. And when we are long dust "we" might contemplate the value of being able to make and have a sandwich tasting all the flavours in our mouth versus harboring resentment that other people exist or fearing the future. You don't have to fear the future. Dying is easy and unavoidable and that's the future. Have a sandwich. Focus on the sandwich. Stop thinking you're supposed to have all this stuff you can't even articulate and transposing our 'anger' and 'resentment' to the worn out memories of what trodlodytes do.
Nothing is going to make me happy as a state right now. I've been through nightmare experiences for years so powerful and so overwhelming finally that I parked the alpha male and created a child. The child still inside us all knows the true value of all the 'stuff' adults wrap themselves in. Roles for example. We aren't roles. We do them. They're like familiar blankets that obsucre things like that we would never listen to our parents when we were 30 but if it's us it must be different. No it's not and no generation learns that. Because no generation wants to. It's just an example where our jobs or our status if we're inclined that way would also serve equally as examples.
Ten years of my life have gone down the toilet because of this. My roles and my meaning are burned out stumps around me. Every two bit doctor will agree the whole experience is extremely unhealthy in numerous important ways. Now I get to start over from a deep hole. What is there to feel rage about??? Have a sandwich. Be the sandwich. It's just as real as the resentment.
And when it's got you by the throat do what I do. Nothing. It will pass and your strength will return. I guarantee it.
Wolf, you articulate things so well, I think most of us can identify with you. I just feel this tremendous void most of the time and the rest is filled with panic about finances and if I can outlast this to maybe have a new normal. I can't even remember what normal was, if it did exist. I find that most people are uncomfortable hearing the real story of what this is like, perhaps because they hope they won't have to endure the horrible life this is. I can't cry as I have no tears left from the early years that were not understandable until it became very evident that it was alzheimers. Keep posting your thoughts you inspire us.
Thanks Wolf and Amber. Reading your posts makes me think that perhaps I am okay! Ten years of life down the toilet sums it up for my life also. I appreciate that doing nothing is totally normal because the information came from a qualified expert in the ALZ world. That is you, Wolf, a fellow spousal caregiver. Amber, I cannot imagine starting over either. You are absolutely correct about the emotional and mental toll always being there even after placement. I love the freedom of living alone and doing what I dang well please when I choose to. The one thing I have difficulty with in living alone is eating. I am working on that. I have just decided I will eat to live and not live to eat. Sharing your thoughts and feelings help me tremendously so "Thanks a bunch".
"What I want to do is kill something and feel it's lifeforce draining in my fingers. We don't talk about the rage and women love to pretend they're above it - but I know different. So I say it where no one else does. You have rage inside every one of you and I'm not really interested in responses to that. It's blocked out - I get it."
We think differently on this....I believe when we finally place our SO we are so damn tired that there is nothing left to give so there's no rage left only a whimper and not a bang. Also if there is any little bit of bang left it is saved for if their needs aren't being meant in placement. I have no battle left in me, Al Hiemer has taken it all. Now I'm not saying in a couple of years from now I won't be back in kick a** mode but right now there is no gas in the tank.
Nothing - I guess it depends and who or what is in your life...I have a granddaughter that isn't nothing and needs me...I know you aren't implying anything mean.....that makes me get moving and see there is lots of thing in life that I'm still need to explore. Thank goodness for 10 years old eyes for this 55+ to look through.
With everything that has gone on I still love life!!! and plan to get back to living it fully. Now Wolf it's time for you to get with it and what you wrote to me about how my hubby would feel about what he has put me through I bet that your wife if she could would echo the same thing. Time to get back to the living and have something.....lots of somethings!!!
I can so relate to being completely exhausted. I miss all levels of intimacy so very much. Having someone close to and walk through life together. And I do not have another dementia/Alzheimer's journey in me. I realize of course I could develop the disease. From this experience, I have told my husband's kids, if I get the disease try to get me a private room in a facility, surround me with some favorite things - self-help books, writing materials, make-up, cozy socks and blankets. Then forget about me and enjoy your life. So very grateful to each and every one of you.
I have a smidgeon of sanity left that I use when I get to go out to eat or shopping with my 4 grandgirls (3 teenagers and 1 preteen). The girls being young, vibrant and so full of life just makes me happy when I am with them. They have busy lives and I don't get to be with them as often as I would like but when I am I enjoy it to the hilt. When it comes to the bull at the NH I have just stopped answering the phone and listen to the messages they leave. To me it is mainly tattling about the staff not doing their job. They have "cried wolf" to many times. There is no need to call me if he goes in to another patients room. Get him out! That's their job. Do not call me, but they do. Yep, for sure "My give a d**n is busted' when it has anything to do with the NH.
mary75*, I'm glad you had a chuckle at my negative comment! I Just can't seem to adjust my attitude. I'm positive you are correct about protocol for their protection. I do believe that had I complained half as much to them about their caregiving as they have to me about DH's behavior I would have been invited or forced to find another facility for him. I even get to pay an astronomical amount to hear them complain. Common sense about caring for an ALZ patient has left the building! Oh wait, it was never in the building! Thanks for letting me rant.
LFL, Since this ALZ world is such a "haunting" nightmare calling Ghost Busters sounds like the ideal plan. Convincing the NH staff to do so would, without a doubt, create another nightmare for us.
My life has gotten better each of the last four years.
Of course four years ago I was being turned on a spit getting electric shock therapy while it was constantly raining. Actually that would be better than surviving that last year with Dianne at home again. It helped her and I don't really mind but for me it truly was what I hope is the worst year of my life.
In my first year at home I was a mummy. Or I may as well have been. The second year was noticably better. Less stormy days more good days some fun days. This year is what I would describe as near normal where I hope I'm not as screwed up as everybody else I know, watch on TV, or read about.
Next year, if I'm really lucky, I'm hopeful to get some feeling back in the body the disease has been using as a pain stick the last eight years of my so called life. And in two or three years I may be ready to see a therapist to help me understand why this is my fault. What I really want is to get a refund for the lost years. I should at least get a coupon or a discount or something that gives me a leg up on inventing a new person in a new life.
I also want to thank Alzheimer's for not only taking our lives away slowly but also making me start over as an alien on a strange planet because you can't buy this kind of entertainment.
Just wanted to throw this out to you who may be further along on the journey than I. My husband was placed almost a year ago. For the most part we are both doing better. He has adjusted and for the most part so have I. I know I need to start doing some things like maybe travel or put myself in situations where I can meet new people but it is like pulling teeth and I have to summon all my energy to even entertain the thought let alone actually do it. In short I have to force myself to try anything new. Part of it is I think is my personality as I am more introverted and welcome solitude time. But I wonder also if this is part of grief. I have a wonderful family, children and grandchildren but I want and need to live my own life and not live through them. For those of you who have placed your spouses was this something that you went through and how long did it take to actually be able to spontaneously do things. As I look back I realize that most of the years that I was married were consumed with raising kids and taking care of him for for the last 10 years and now that I have to take care of me I am probably at the preschool level.
"I think is my personality as I am more introverted and welcome solitude time. But I wonder also if this is part of grief. I have a wonderful family, children and grandchildren but I want and need to live my own life and not live through them"
CO2 - I find that my daughter, that is breaking up from her common law hubby, sees me free from caregiving and thinks I can look after my granddaughter on her time schedule. Now don't get me wrong I love! my granddaughter but I feel like I'm right back into caregiving, constantly picking up after her. I'm getting that tied down burnt out feeling again. I know I have to put down boundaries and do this on my terms but with the mess in her house I don't want my granddaughter to live it and she needs me to be there as a safe place to go to. But I'm longing to just be left alone and go visit them when "I" feel like it. Plus I have so much to do around here that I just don't have the energy to do. Getting up and going to work is enough.
CO2, I can relate to everything you said. I'm an introvert by nature too but I do find it easy for some time to talk and to be an extrovert around people. Yet I feel the very same thing that putting myself in a situation where I meet new people is like pulling teeth. For me that's not because I'm shy or nervous about it. So I do agree there's something there and maybe it is the grief.
I have however opened up to what is real around me somewhat and for the first time in my life I have neighbours who are becoming more like friends. I can see a lot of that comes from me where I'm more open to exploring further but I'm definitely still reluctant about new relationships even though I understand clearly that's what I both need and want.
I think some of this involves trying to understand ourselves more deeply in the sense of what we really want. I talk about getting out there and I do go out into the world 10 times more than last year and I like it - but, it's always alone. I think things are going on at a deeper level where learning to be open again to just driving around and being out there for fun is opening for me now.
I also think I know what's going on inside me. The biggest part has been the serious effects of the disease on us where you touched on grief but there is more than that. Getting to where that is NOT the biggest part has been over two years for me. I'm not healthy yet in terms of being as normal as before the disease, but my issues are comparable to the people I know around me who never went through Alzheimers and never lost a spouse.
I'm in my third year at home and I'm satisfied that I took the effects of AD on the caregiver seriously which in my case were extensive. I don't have any regrets about what I focused on, none of which involved other relationships except in that all the relationships I had before needed consideration and repair. Almost no one helped me when I was desperate. That's a hard thing to learn about people who are hugging you now. They want me to be ok. They can't deal with Alzheimer's though. It was here that I learned that's normal.
What we do now I think hinges on understanding what we actually believe and actually want - as opposed to what we think we should do. I can't hold on to the idea that I'm exceptional and therefore my friends and family should have been exceptional. I also think it's false to cling to Alzheimer's as the reality to defend as valid. I don't believe that so I accept my circle was normal and welcome me but not Alzheimers. They love Dianne too but they hate Alzheimers. We're not the issue. People are the issue. When we harbour resentment of reality I'm out. I also don't have the self aggrandizement to believe that if back then someone else had gotten AD that I would have risen above what everyone else was doing. Some might see that as forgiveness. I see it as the only truth.
My goal is to feel good again and the fact that there's yet another war in the middle east doesn't deter me anymore than that people are what they are and always have been and so am I. They can't give me a life anyway which was never on offer from them and isn't now. We do well to get rid of baggage we don't believe in.
I don't know how the introvert steps out. I remember when I was shy and sensitive. Things happened to me then and that's how I saw the world. I learned by the good fortune of my experiences that I also happen to things and that it's easy if you relax. That's not what's holding me up right now and I hope that you find the same thing I did after my first year. It keeps getting better as more acceptance, time, and healing takes place. Time will happen. The other things may come with it.