Lorrie, I am glad to hear that you were able to place your husband in Arden Court. Their facility was by far the best I found for a young (58 at the time) strong and healthy man with dementia. Their resident population was younger than most and they had more men in the facility than I found in others. I looked at the facility in Whippany because at the time the West Orange one had no openings.
I wish you & your husband a quick adjustment because I know how exhausting and draining the visits can be.
Abauche, I am so sorry your husband's transition is difficult for you both. I will keep you and Lorrie in my prayers.
Today my husband went back to his care home after a week in the psych ward and it went very smoothly. I hope with these new meds, he will settle down and I can visit whenever I want to and we will enjoy our time together. Prayers help....I'll take all I can get.
abauche, I am happy to hear that the care home transition went smoothly for your husband. The med adjustment is so tricky for ALZ patients. When you start your visits I hope they are enjoyable for both of you. In the meantime I hope you will be able to get some much needed rest and peace of mind. ALZ caregivers deserve a little "me time" to enjoy our life too. I'm on board with the prayers for you. We just have to trudge along and take one day at a time. Take care of you. ((Hugs))
I really have nothing to add but it was shocking to read stories so similar to mine.
My husband is currently in psych ward because of aggressive behavior. Plans are for him to return to NH in a few days.
At the moment, I'm dealing with the question...why is it like "pulling teeth" for medical facilities to provide information, share with us their care plans, etc. Paraphrasing their basic responses: "We have it under control; go home; get some rest".
And, will they please stop with their Alzheimer's medically trained responses? Very frustrating.
paj, if you are his dpoa or legal guardian, you have every right to have access to his charts, have a discussion with his treating physician about their recommendations and plans and certainly should have input to the care plan during/after discharge. See if you can speak with the social worker in your husband's unit/hospital and get all the info. If not, speak with the patient advocate and request a meeting with all the appropriate parties. Take someone with you to take notes so you are free to ask questions without worrying about documenting. I actually had great success with contacting the patient advocate in the past.
The responses are to stop you from asking more questions. You have to get past that.
I think we all are still in the"dr.'s and nurses" are to be listened to and not argued with. Like old times.
I think we have to get past that and step up and realize they are there to help us care for our loved ones not stress us out by keeping things from us. Maybe they think we are not up on the terminology or Meds. Maybe they don't realize that we, as caregivers, spend hours researching this disease and have support like here to help us with the job we now have. In real estate it is" location, location, location. In caregiving it's "ask, ask, ask." Don't be timid! You have ever right to all that information. I will be going for Kevan's year end evaluation. He will attend the first part then leave and I get the rest if the meeting. He is still able to attend and contribute. I wish they would realize how much stress they put us through by trying to evade us or what ever they are doing.
Oh Lord. I just got my DH settled in the memory care facility. He likes it there, much to my relief, although he is of course still puzzled over why we're not together. He really, really hated it in that skilled nursing facility. This is a much better place for him. I want to get him a private room there, I don't like the roommate situation, and neither does he. I am going to stay on top of the facility to see what they can do to make that happen.
I am still overwhelmed with grief, and paralyzed. The hours I have alone are spent on computer games and sleeping, then trudging through the day like a zombie. My house is a complete mess, but I am absolutely too grief-stricken to move. I am and have been on high doses of anti-depressants since the caregiving became overwhelming a couple of years ago, but this doesn't even feel like depression. It feels like something much deeper and more intractable. I take strength from those of you who share your stories here, and I know I am not alone. But the grief and guilt are horrible.
Thank you all for being here, and for listening. My black cloud would be one hundred times more unbearable without you.
I was like that for months Joni. Give yourself time by not demanding too much for a little while. My house became a complete mess back then too where now it's a half mess which is the way I like it.
I told myself the main thing is that I get back on my feet and the first part of that for me was giving myself a break where I don't expect much so that I have as quiet a time as possible to catch up a little.
Throw guilt out with the garbage. Nobody should feel any guilt here and when it comes it needs to be trashed because it sucks the lifeblood out of us for no valid reason.
Please go to the home page - www.thealzheimerspouse.com, and click on Previous Blogs on the left side. Go to August, September, October, and so on from 2013. They describe how I felt and dealt with placing Sid in the nursing home. I allowed myself to take as much time as I needed to do what I needed to heal a little. That included mostly, as you are doing, getting into bed in the middle of the afternoon, sleeping, and playing stupid computer games. It was all I could manage to do for months. By allowing myself this time, I got up when I was ready. There are two blogs -the first is titled - On Our Own Timetable, and the second is is titled " In Our Own Way" . (I may have that reversed). In any case, I believe that they will be of great help to you.
Thank you, Wolf and Joan. Joan, I read your blogs and was moved by how much we have in common. Until I found your site, I was sure there was something desperately wrong with me because I just couldn't seem to handle my husband's disease progression. Through all my years of caregiving, I felt that if I ever placed him somewhere, it would be a relief for both of us. I'm still shocked at how difficult this is, realizing we will never live together again. Thank you, Wolf, for your kind words and advice. I will take it to heart, especially about the guilt. Today my husband was sitting at lunch and eating "imaginary food". He mimes like he's picking up food, then brings his hand to his mouth, opens it, and puts the "food" in. The new caregiver with him today commented on it, and I realized that he has actually been doing that for a while, even while he was still at home. I tried so hard for so long to deny that he was getting worse, and that I would need to place him. For so many years, I have covered for him with other people, even with doctors. After he was in the nursing home, he was crying about not being able to come home. I cried too, and said "I love you more than anything on earth", and he took my hand and said "I have never doubted it". My poor, sweet husband. This is so cruel.
OMG OMG OMG!!! Joni, I could have written your posts. I am basically a newbie in that I have just recently (two weeks ago) placed my husband in a care facility. He is transitioning well, much better than me, but still doesn't understand what he did wrong to be 'locked up' there and can't wait for the 'sheriff' to release him. I too thought that when this day came, there would be some relief in it. I could sleep at night again, I could actually function at work, I could reconnect with friends and even our kids. Turns out, all I really feel is GUILT and listlessness and.... empty. Yes, the dawning of that thought: We will never sleep in the same bed again!!! I found I couldn't even breathe.
I don't think I feel depression, but I really don't have any experience with that, so perhaps that is exactly what it is. I too thought there was something wrong with me. Can't eat, sleep fitfully, and cry at the drop of a hat. If I see something that makes me sad, I cry. Something happy? I cry. Something funny, I cry. Reading this as I type: I cry. I am a basket case.
Last Friday, I had a mini-meltdown. I am sure everyone here has experienced this. I started thinking about the various posts I have been reading on this website (thank God for this website). So, I took the dog to my son's house, packed a bag and headed to Reno for the weekend with my best friend. She and her husband (also Bill) and Bill and I were best friends for over 20 years and the 4 of us did everything together. Classic cars, auto-racing, riding our Harleys, shooting pool, playing bocce, bowling, etc. etc. Her Bill passed two years ago and she is still deeply mourning his loss. My Bill was stolen from me by this horrible, insidious disease several years ago (diagnosed 10 years ago), so we both feel like widows. I can't say I had a great time, but it was 'bittersweet'. It was good to get away for a while though. I found I wasn't crying nearly as much as if I had stayed home. I found that during the 3 hour drive home, I couldn't wait to visit with Bill. And when I did show up, it was the best visit I had with him since having him placed. Last night at home, I slept the whole night.
Hi ladies, it's a very painful experience placing our partner into a home but we have to try to remember that their condition will need more care with time and we can't provide that by ourselves and secondly that as we begin to have some time and get some sleep we need time to let events catch up and look towards getting our own feet on the ground.
I'm almost three years into placement. The first months were very hard to go through for me.
Last night I hardly slept. Instead thing after thing went through my mind in a kind of half-sleep and once that started it didn't seem to stop. I'd realized a few weeks ago that I spend a lot of time in my mind pointing out things that aren't what they seem and even inventing them. Like a person caught stealing and lying about it and the tape of them doing it being shown. Or that what someone said couldn't have been sincere because they also did this other thing. That Putin sticking his fingers into the Ukraine was criminal but the West bombing Iraq was humanitarian. On and on and on.
I started noticing I do that a lot so I tried to find a way to break it and I came up with the phrase "Stick it in their face Wolf" which I started saying when I noticed I was doing it again and that phrase always fit because the hundreds of things drifting through my mind were all like that. Pointing out deceit everywhere like an obsession (thanks for that word Marche).
Well, i don't know if my doing that caused me to see them all lined up as they really are which is 1,327 things that have hurt me these last eight years and the 3 things that have been good in the same time. I got up this morning feeling despondent that for all my efforts I was only a few steps ahead. Then I read Marche's advise on another thread this morning and it fit like a glove into my own problems.
I live in a strange world. My wife is dying and I have to pretend she's already gone or I will fixate and I need to do the opposite which is build a life I can be content in. Even though our EOAD moved like lightning compared to some I still broke down trying to keep her at home and most here don't need to be told what all those experiences do to us for some time.
I'll tell you two things straight up that I know:
I'm fighting for my life here. I came away from suicide fixation and three years later I can't face funeral arrangements and if she dies before I have enough ground underneath me I'm in trouble and that is real.
The deceiver is me. I hunt better things but my truth is eight years of incredible pain. On the one side of the coin I insist on deep truth and on the other side of the coin I am the engineer of the great lie. My mind tries to deal with both.
I will be on my knees again. I will always get up. I've been getting up in hopelessness for years and like any skill I've gotten good at it through experience. Besides I've been at that sucide door drawn in a psychosis and my weakness banged on that door time and again and there was never a chance of going through with it. You want humility? Wolf watched that. I found out - I didn't control.
So there is only one road and I know what to do. Stop saying "Shove it in their face Wolf" and let it become elevator music because I chose this road and the duplicity is the duality I consciously pursue. To battle the feelings caused by Alzheiemers without denying them so that I can keep finding the places I need to stand on.
I'm winning. I say that with certainty. The monsters stomping around aren't half as big as they were three years ago where any one of them made me pee in fear. I've kicked some in the head and even killed two. Guilt. Fear. Gone. (normal levels)
If I want to be a whole person again I have to fight for it where only I can because no one can give me that but myself. And I do have solid things now I didn't have before. Just keep working at it.
All this to try to feel good again afterwards. What a strange thing life is sometimes.
It's now almost six weeks since I placed my DH in memory care ALF. The reality of the trauma of our separation forever is now even worse in a different way for me. At the time, I was in crisis mode and the events were surreal. I could hardly breathe and cried and shut down. Now everywhere life seems to go on, but not for me or my husband. I still want him home with me, especially when he cries or I see glimpses of " us". But, then I know he will also be combative and aggressive and that is why he is there. My support group social worker reminds me to keep a list in my head of the reasons he is there. To remember he is safe and so am I and others. Sooo painful.
Lorrie, You are not alone. I so understand your feelings about wanting your husband home. This business of not being under the same roof as our spouses it truly disturbing. It just feels wrong. I go to sleep on my side of the bed and when I wake up, I'm on his side. We are four months into this. When he first went in, I desperately wanted him back. By now I have accepted our physical separation but I am not happy about it. I have to steel myself not to think too sentimentally about the situation because when I do, I completely lose control of my emotions. Of course, this grief over being separated does not erase the grief all of us experience as we witness our spouses' decline. My husband seems to get sweeter and more childlike every day and this fills me with fear. It's impossible for people who have not experienced this to understand what we are going through. If I did not have this site to go to I would think I was losing my mind. All we can do is to try to hang in there.
Myrtle Thank you for sharing your feelings and experience. I've actually had some say it must be easier for me now or don't I sleep better now. I want to scream "NO, how is it easy to be without your husband ..to sleep alone at night..to Visit a home to see your husband..to watch him cry..to see the confusion in his face and then to desperately want to take him home but know you can't handle him ?
My DH has been in Memory Care for 1.5 yrs now. Initially I was in a better place emotionally than I am now. I find that if I am there every day, my heart (and head) stay in this sad, grieving place but if I give myself a day off, I can function better. However, I can hardly stand being away from him because he is changing so much now. Myrtle, I completely understand what you said about his changes filling you with fear. I almost want to dig my heels in the ground and make it all stop. But I can do nothing but accept and pray for strength, so I putter around here and sing and read and watch stupid TV way too late in the night! Ok, I drink a little wine too, but just because I need something to go with my chocolate. :)
Fiona, We all do these things. Eat or drink too much, or eat the wrong things, . . . I just had a macadamia nut, white chocolate cookie. Whatever it takes to hang on - cookies, wine, chocolate, whatever. It doesn't matter -- we are trying to survive.
It is so sad. I completely relate to everyone's sharing, as I lie here at 2:00 AM, grieving and sleepless - again. I've started smoking again, which means I'll just have to go through the agony of quitting again soon. I can't stop obsessing over how my husband is doing, is he sleeping, eating, crying right now? He has been in the NH and now the memory care facility since August 28th, and so far it's not any easier. I can only pray that it's easier for him. I know it's safer, at least I have that to cling to.
My DH has been in this NH about 6 months, and was previously in respite awaiting a bed for about 6 weeks before that. This is a good NH, he has a nice room, with his things around him, but he has not really settled. He looks for me every day, and begins getting restless before noon. I spend from about 12:30 – 1 p.m. to when he is in bed with him. He weeps when he sees me, then settles down and is generally ok until about an hour before I leave … then he begins to wonder ‘when are you leaving … what do I do now? Can I go too … where are you going? “I want to go home”. I think by home he means wherever I go. He doesn’t know my name, but definitely knows me still, and I am the one thing he clings to. Two weeks ago we both got sick, and I was not allowed to visit for 2 days (temperature & cough). They put him in isolation, and on the 3rd day I felt well enough to visit, but at 6 a.m. that morning they sent him to Emerg. He was very, very sick. The doctors prepared me that he would probably not make it through the night. I was allowed to spend the nights with him in a recliner beside his bed, and this was good for both of us. He spent 8 days in hospital - it was Influenza A, with bowel obstruction. He’s back at the NH now, but much weakened. He is very tired, and keeps telling me that ‘it’s no good for me any more’ ‘I’m not good anymore”, etc., is depressed, and begins to cry. I look at his arms, once so muscular and strong, and see that they are now not much bigger than mine, the confusion on his face, always close to tears, and it is heart-breaking. So, ladies, I truly understand what you are feeling. I feel like half of me is missing … he is my best friend, and I’ve told him that I will always be here for him. It sounds corny, but in spite of all the changes, I still see him with my heart, and when I look at him I still can still see that young, strong guy who was so protective and supportive of me. I know he desperately needs me now, and I’ll do whatever I can to ease what he is going through. On top of this someone stole my wallet at the hospital, and I’m now trying to replace my driver’s license, insurance, parking pass, health card, VISAS, birth certificate, etc. etc. Why couldn’t they have taken the money and left the wallet somewhere? I cannot understand how people can do these things. My thoughts and best wishes are with all of you, as we struggle to cope. Margaret
Margaret, your post broke my heart, as I know what you are feeling. There are so many times that I just don't think I can make it through another day. I feel like my right arm is gone. All I do all day long is pray that he isn't always aware of what's going on. Tonight I was going around the house cleaning and actually felt okay for a few minutes, then I broke down sobbing for hours. This is such a tough thing. I pray for all of us for strength and guidance to carry us through it. Joni
This emotional roller coaster goes on. The other day I was heartbroken and wanted him back home. In my mind, I almost thought I could and should have him at home.
Today I find out that last night he was very combative bordering on violent trying to choke a caregiver. Were it not for another unfortunate event at the same time he would have been taken to Psychiatric Hospital. Reminder for me HE CANNOT BE HOME SAFELY! But, now we must do something about his behavior before this can happen again. Tomorrow I will meet with staff.
Now, I just want him to settle in there and remain manageable.
Joni1957, this IS tough stuff. Know that you're not alone. We all have to do what we think is right for our situation and for our DHs - the hard part is trying to be strong enough to see them through to the end of this terrible disease, and hope we make it, too.
Lorrie - I think I am correct in my understanding that why you DH is so combative/at times violent, is because of the fear he is facing, and not understanding what is happening to him. I have not faced that, and I truly feel for those of you who are in this situation. Mine has just taken a different route. Since we cannot handle all the care on our own, let's hope that our DHs can settle in, with some adjustment, and come to some sort of peace.
My husband is still in the psych hospital and its been 2 weeks now. Today for the first time, he displayed aggressive and combative behaviour. I am so depressed about it, as I thought he might be able to get out of there soon. He has to be calm and dependable to remain even in disposition for a care home to accept him. He was not even happy to see me. I took him out for a walk and usually he holds my hand and today, he wouldn't. I brought him in a home cooked meal and he ate it with a big frown on his face. I wish I knew what he was thinking. I tell him he's in the hospital and will be out soon. Not sure if he understands. I agree he does not understand what is happening to him and I can't imagine how I would feel if I was in his place. He is also dealing with a cold and who knows how that affects his mental state and his ability to cope. I am so tired of running around going in and out of that hospital too. I would like him settled if that's possible.
Lorrie & abauche, my thoughts and prayers are with you and your spouses at this very difficult time. Your stories bring back all the horrible memories we lived 6 years ago. I hope our story gives you hope that there is a light at the end of the tunnel. Yes it took 4 months in 2 psych hospitals to get the right combination of meds, but it did work out. It was a living nightmare to be sure-for both of us. And yes, we have had to make some adjustments to the meds as he continues to progress, but thankfully most of the aggression is controlled. He remains difficult and "combative" during bathing but that's much improved.
I remember well the anxiety and heartbreak you're experiencing while the doctors are trying to find the right med combo. And the emotional and physical exhaustion of visiting the hospital every day. So emotionally overwhelming to watch your spouse be confined. My husband's behavior was so unpredictable that he had a one-on-one aide with him at all times to make sure he didn't injure any other patients. It broke my heart as I'm sure it's breaking yours.
Joan has my email and I will contact her and ask her to send it to each of you should you want/need to contact me since I have been down this road too.
Latest update...depakote was added to meds for DH behavior which ranges from crying and sobbing to agitation and / or combative behavior. Yesterday he was dizzy and losing balance.
On top if this, I am feeling Soo heartbroken....tears won't stop. I feel hopeless when I realize I must live without him And alone for the rest if my life. I am 64. I have children and friends but that doesn't stop the pain. Today, I feel this can't be. I want another chance, another time to spend together. We had so many plans and dreams. My husband is in perfect health were it not for AD. Tonight I feel this is so unfair. I feel so despondent. He has been in Alz ALF since the end of August. So traumatic... So very hard to see him there and not want him back..but, it's our old life, before AD I want. How do we go on.
One step at a time. I have children around your age and I know how hard it was on them with their Dad. It's your spouse and that makes it much harder. Praying for some sunshine in your life.
I am sympathetic to those spouses and children caring for a beloved spouse/parent experiencing Alzhiemers. That is a difficult task that takes information, help and patience.. My concern is the spouse that decides it is too much trouble and lets the spouse die...no information to the children or other concerned family members...They are the spouse ad it is their decisions...I am confused with how a spouse can decide to let their spouse/partner of die and so many "loving" years can be cased aside...too much trouble, don't know what to do,,,don't want to do anything......The spouse makes all the decisions for the afflected spouse and totally against their wishes and thinks it is their "RIGHT" as the spouse.....there has to be a low that protects them from the thin line between spousal abuse and spousal rights,. Children and famiy members lend support, pay attention and listen to the alzhiemer patient. They are aware of more then we give them credit for.
I am confused with your comments chldren. As a spouse and caregiver of someone with Alzheimer's, we all become completely overwhelmed with the the needs of the spouse and most of us caregive until our own physical and mental health are affected. Even if a loved one goes into care, you are still there to be advocates and be with them. Some people spend many hours of the day at the care home still providing care. It ultimately does become the decision of the spouse or caregiver when their own well had become dry and they can do no more without help. Some incredible people care for their LO until the end. The 'loving" years are seldom cased aside as you can read into in the many blogs of those who are devastated with their spouse in care, as I am.
Chidren, are you a spouse of someone with dementia? If not, please note that this site is for spouses only. If you check the topic headings, you will notice that this has been addressed: "These Message Boards are for Spouses Only - Please Read." Perhaps I'm misinterpreting your post? You seem to have a specific case in mind of a spouse who is being abused.( I know of no one on this forum who fits that scenario.) If this is a personal concern, I suggest that you report it to someone who can help and protect the spouse. A doctor. Social worker. Lawyer. Is "Chidren" a contraction of the word "children"? Are you the child of a spouse that you think is being abused? Could you step in and be an advocate for your parent? There are many ways that you could help. If I misread your post, I apologize. I'm interested in standing up for all of the spouses here who have made, and are making, great personal sacrifices to care for their spouses as best they can.
children, I am also confused by your post. If you are a spouse and have walked the ALZ caregiver walk please offer helpful advice to us. We are respectful and understanding of every ones situation.. In my life most family members slowly quit visiting because they did not know what to do to help. My children have been supportive of all of my decisions. My husband does not communicate at all so I can not listen to him as he is silent. I want him kept safe clean and fed at the NH. I will be awaiting for knowledgeable advice from you to make his life better.
This will be the first holiday season since Bill was placed in a Memory Care Facility. Any advice? Traditionally, the kids always came to our house for Thanksgiving dinner. I want to have Bill celebrate Thanksgiving with the family, but am wondering if we should have the dinner at our daughter's house or even at a restaurant. Coming 'home' I think would cause too much confusion. He was placed only a month ago. Seems to be settling well.
Does the Memory Care Facility allow guests in their dining room? I found that less tiring for my husband. You also get a chance to meet other patients and their families. I think it reinforces the conception for your husband that this is now his home. After all, you eat there, too.
I too tried to keep up with some traditions and soon discovered they were not in the best interests of my husband. He tried to go along but it was heart breaking to see his struggles and confusion. He quickly wanted to return to the facility where he felt safe. I agree with Mary. I found when I finally figured it out, it was better for both of us to join him at his facility for meals. I do this regularly now. My husband's son is not comfortable though bringing his wife and our granddaughters in for meals so they don't join him any more for "holidays." Not sure Darlene what your family dynamics are but many families where my husband is do what Mary suggested. Also does your facility offer a family meal for special days? Ours doesn't for Thanksgiving but does a wonderful Christmas lunch with turkey dinner, all the trimmings, decorations, music, etc. That is how I celebrate Christmas with my husband. His son joins us for that as the girls are in school. Oh, we sure have to put on creative hats regularly with this disease.
I am not sure if the facility allows family to eat with the residents on holidays. They do not typically allow it regularly as they have assigned seating at each 4-top dining table. (It is pretty cool actually. They get cloth tablecloths and napkins, and the staff always fold the napkins fancy like in a restaurant.) This way it becomes more routine, more 'normal'.
As a trial run, I am thinking of taking him out for a ride around town, just to see how he does. I won't take him anywhere near home or anywhere too familiar. I just want to see what his reaction is when I bring him back. At least he no longer thinks of the facility as a jail; now it is 'a hospital with a patio that goes nowhere'.
We will go to L's sister's house, which we have been doing for years. Her sisters do not want her visiting home again so they help make sure she doesn't get close.
My bigger problem will be high school graduation in June.
I've worked hard these three years with Dianne in residence. Coming to realize how horribly not normal I had become trying to keep things together. Abandoning my wife is the single most terrible thing I've done. And then being alone at home and feeling intensely how I felt a complete stranger to myself and the tribe I once belonged to. That parts of me understood I was virtually insane and no one could help me.
We can tell the abuse victim to get over it but that's not how it works. We can be fooled because we still pay bills and still function but that's not how it works either. Even with psychiatry the patient must heal themselves because there is no way to graft belief into people that holds. Anti depressants alter the mood and so help with current moment feelings but they must somewhere be gotten off of and we still face the same realities.
Going out and doing things and being with people can help. It certainly diverts the mind for a bit. But when we harbour resentments and feel hurt seeing others' affections it reinforces our defensive mindset. For some time my thoughts were dominated by what people are and aren't in very judgemental ways. They were much easier targets and pressure relief valves - but the true judgement waiting was mine of myself. Our thoughts about what others do and say are much different when we're comfortable inside than when we're full of unresolved stress and trauma.
"How is Dianne?" my SIL asked on the phone. "Stable", I answered. But Dianne is long gone and has been long gone for half a decade. And nowhere have the princes of medicine but not humanity conceived that part of the help caregivers need is how to begin letting go as it goes away. Part of the help caregivers desperately need is how to conceive of the truths and the reasons why it's important. Hundreds of caregivers would be helped by being shown by sources they rely on simply that they are authorized and encouraged to do so.
I have no doubt how difficult being happy is. There is endless hand wringing over the punishments and much detail about suffering but in two thousand years there is only a gate, some clouds, some harps, and even here a few fallen arch-angels. Human beings are ghastly inept about this topic where virtually everybody everywhere treats themselves worse than anyone else around them. Is harsher on themselves. Puts themselves down. Perhaps couches it in abstract calculations but the puppet strings are the same.
Come to the one true blind spot under great duress is the challenge. Help yourself REALLY. I can say give yourself the same degree of care that you gave your spouse but I may as well throw dust into the wind because people actually are grateful for their lives while the funeral ceremony is going on but by the time they're leaving the parking lot the fault finder is in high gear and that's a fact of life.
Being not married and not divorced for years is like a poster child on the wall. It symoblizes the outer boundries. Inside those boundries there was a lot of serious pain and I don't pretend to have known any of this most of the time. I had to learn it and then I had to believe it.
What I believe is that those who put their spouse in residence live through a strange period those who had them at home the whole time don't. Vice versa too because they experience things we don't.
I have done what I believe in. I have gotten up on my feet gradually and am working to be me fully in my life. I have let Dianne be in the past as the important truth in my spirit and while I watch over her I do not invest in her because that would mean denial inside me of strong evidence. Within a year she will almost certainly be gone along with all those people who will suddenly not belong in my life. There is nothing left to be said when that time comes. She is here with me in the spiritual sense and her things don't bother me. I have pictures up and some people have sent me others of our happy times. They make me smile when I notice them.
Nobody wins. I didn't beat Al Zheimer. I took my life back and gave her up before she's fully gone which I know is true because I get up every day for some time living that. I've re-entered lives. I'm glad I did. I've let things go. I'm good with that. There are skirmishes but they are smaller and I am larger.
I've knocked the birdie back over the net. It isn't a test about me anymore. It's a test about Dianne. Is she put out that I didn't focus on her anymore before she was gone or is she glad I did what we both said? She is surrounded by help 24/7 we both pay for; but, I had to do this from a deep hole on my own.
We shall see or we won't. I'm good either way. I did what I said.
How did my sweet man I lived with for 30 years become a Dr. Jeckyl and Mr. Hyde? He is now almost a month in the psych ward and maxed out on Risperadal, not recognizable as the man I knew (the walking dead) and can still (as of this morning) still go after the care aide and other patients in an aggressive manner. They isolated him but now his fate is sealed and he will be transferred to a special unit for aggressive dementia patients about 40 min away. I realize he cannot stay where he is or go to a NH where they will not put up with this for 1 minute. So on we go, to the next phase and 'what will be will be'. I have no more control of this as I would never bring him home like this. I can only resign myself to this disease and the route it wants to take us.
Oh, how I can relate to what you are going through. When Sid was in the hospital, and I witnessed him punch and kick two male aides who were trying to transfer him from the ER bed to the bed in his room, I was in shock. I could not believe what I was seeing. Was this the man whose fists were clenched and punching another human being the same man who gently held me in his arms for over 40 years? It is horrendous what this disease does to the brain.
You saying that you "can only resign myself to this disease and the route it wants to take us." reminds me of a quote I read recently from a father whose 24 year old son had died in a motorcycle accident. About 10 years after the accident(not sure of the exact timeline), he was asked how he managed to get over it. He said - "You never get over it. You just get used to living with it." When I read that, I thought it described perfectly what we go through with our spouses.
Everyone has written much better than I regarding the roller coaster of emotions we go through.
Bill has been in care for three months. With the exception of a few days, I visit him each day. I enjoy doing small things for him...brushing his teeth, giving him a foot massage, manicure, etc. especially since that closeness seems to bring him comfort too.
Each time I decide to take a day off and plan to do something for myself or take care of some unattended chores, the day begins and ends with me sitting in a recliner thinking about Bill or crying.
Where is the mental/emotional energy to move on to some part of a "normal" life without him.
A continuous grieving process. A mortal death seems preferable
He is not in the final stages of ALZ so has many moments of awareness which add to the heartbreak and the question, once more, have I really made the right decision for him?
I am now his "big sister" which is fine with me as long as he's content when I'm with him.
My husband has been in care for two months. It has been and still is a horrible nightmare I want to wake up from. Just when I finally think the med adjustment has rendered him calmer, I see him today and he cries that he wants to be with me. Wants to get out of here...now...let's go. Then there's the agitation when we are not going together. I was there four hours before I could find a way to leave.
Again, I feel this awful deep pain/ guilt. I want to take him home. I don't want to go home without him. BUT, I CANNOT!!! Even with Homecare , it would be impossible to assure he is safe and so are others.
So, I am left to sit and mourn this unending loss of the man I love.
To pajama and Lorrie, my husband has been placed for 16 months. It does get easier than in the beginning but I still become anxious and unsettled after a visit. I tell,myself he is safe and well taken care of but there is something inside that thinks I can do a better job. He has actually "improved" since placement I think because of the same regimented routine. He walks slower than a year ago and altho he is physically stable right now I can look in his eyes and see more of him gone. For me I simply cannot visit every day. He does not remember when I was last there. For me visiting every day would make my depression worse,than it is.
C02, My husband has been in LTC since March 2011 and I recently cut my visits to twice a week. Since he only says a word or two every few months, I always dread visiting. I don't even know if he has a clue as to who I am. Something inside my feeble brain also makes me think that I could do a better job taking care of him. When the thought that I should bring him back home enters my mind, I remember the destroyed lawnmowers, burned up microwaves, the flooded house, poop patrol, and my mental and physical condition and I know that I could not be his fulltime caregiver again. Fortunately he never attempts to follow me when I leave the facility. I just put him back in his merry walker and tell him I will see him later. He takes off walking down the hallway and never looks back. (He may be happy I'm leaving so he can go back to his walking, who knows?!!) I did visit every day for the first year and gradually tapered off. I feel guilty about not wanting to visit and depressed after I do visit. After three and a half years since placement I should realize that it just is the way it is and accept it, but that guilt is always lurking in my head. paj and Lorrie, for me it has gotten a whole lot easier in time, but the emotional side just never completely goes away. Sending you both a big ((Hug)).
AliM, thanks for reminding me that i am not alone. I too have guilt about not wanting to visit. I tell myself i should want to visit and spend time with him but losing the ability to have meaningful conversations and communication plus the fact that he is not the person i married anymore are all factors have contributed to me not wanting to visit. He still talks but makes no sense. His day consists of pacing. The doctor says is it because there is no place for the energy to go. I totally agree that it is the emotional side of me that cannot let go completely. I want to and in many ways i am moving on but as so many people here have said how do you move on (especially emotionally) when they are still here. I feel like a widow but am not. I admire Joang as to her persistance in fighting for his care. Honestly i do not have the energy. It is all i can do to get through each day. God bless