I placed my dh in an ALF at end of October. Just like you I feel lonely and depressed. I know I couldn't do it any longer but it still doesn't take away the guilt. Now he has congestive heart failure also. I started going every day to see him but I really think he does better when I skip a day or two. When I leave I say I am going shopping, eye dr. appt., etc. Never say "home". I am sure he is making a better adjustment than I am. Others on this site say it gets better with time. I sure hope so. Hang in there as you aren't alone. Tell us more about yourself.
If you don't mind sharing, I would like to hear a lot more about you and your husband. It will help all of us in giving you suggestions and support. All of my blogs related to my husband's placement are still on the home page (www.thealzheimerspouse.com) of my website. If you scroll down to the bottom, you can read the first one I wrote as placement neared. The rest chronicle my struggle to adjust. Read from the bottom up.
If you have had a long, loving marriage, as I have, adjusting to placement is a long, slow process. Most of us are completely worn out, burned out, stressed out, and emotionally drained by the time we place our spouses. My best advice is to listen to your body. If you are tired, sleep. If you need to rest, rest. Don't rush anything. Take as long as you need to regain physical and emotional strength. It took me two months before I was able to get out of bed in the morning and face the day without wanting to run back and put the covers over my head, and 3 months before I started to feel somewhat normal and have desires to go out and do things. Some people adjust right away. Others take longer.
What helped me most was nightly phone calls from my wonderful friends and the support of my website members. For the first month, 3 close friends called me every night to keep me company and let me talk. My website members wrote e-mails and posts under this thread for support. I don't know how I would have survived without them.
Yes, we have been married for 35 years and it was just 4 years ago that I noticed things weren't right with him. I've been doing everything for him except he could feed himself and walk. It was just like overnight that something happened and he wouldn't listen to me and became fixated on things and I found him talking to himself and looking in the mirror and recognizing me but not himself. It was always just the two of us and he did everything. I had to learn how to do everything - even just writing a check because he always handled that. None of the medications made any difference - I tried a clinical trial and that did nothing. He doesn't sleep at night and kept waking me up and he's incontinent and he started not wanting to shower. I tried home health care but it only helped for a few hours and becaused of having dogs that don't like anyone but us I couldn't have someone come in for more hours so he's in assisted living. I've been visiting him for a few hours every day but it's hard when I have to say good bye. He has asked a few times if we're going home. I feel guilty, sad and lonely.
Susieq I am so sorry for you sadness, how I can understand each and every word you wrote. Make sure to keep reading here as truly we all get it . Hugs and love to you.
And Vickie you are also so on my heart dear lovely woman. All that I can give in caring and love over this media I give to all of you, how we need such caring from each other.
i haven't been on site for a while. on halloween morning i received call from afc that hb was not responsive and they were calling ambulance. met the ambulance at hospital and after er dr checked him out they did a cat scan which revealed subdural hemotoma/stroke plus afib. my daughter and i were there and son on cell. decided dnr and no heroics. on sunday he woke up and started begging for food and drink and was very talkative but couldn't swallow. i could not withhold feeding tube when he stared us in the eye and begged for food. he gradually was able to swallow and was transferred to nursing facility after 13 days in hospital. he is now eating very well and getting physical therapy and today at weekly evaluation think he is doing very well. we went from thinking about a funeral to now more nursing home time. after seven months of adjusting to him being in afc i was finally starting to remember what normal life was like but not really living it to now back to square one with worries about how do we afford this. alzheimers is still the major illness and probably in mid stage 6 (as per dr.) didn't know where to post this so thought this was best place.
dorielMl, I am sorry for this bumpy stretch of road you are traveling in this cruel dementia world. I have been in a similar situation. After 17 months in ALF DH was sent to hospital for possible stroke which turned out to be only dehydration. Because he wanted to get out of bed and walk they drugged him in to an unresponsive state . After 14 days he was discharged to Hospice. Four doctors told us that was the only thing they could do. We trusted them. My son and I made funeral plans. AT the hospice facility they did not give him any more drugs and on the fourth day he was eating again and allowed to get up and walk. After an 11 day hospice stay he was discharged to a NH where he is today, 14 months later. I am sure you did what your heart led you to do in your feeding tube decision. Since he was sent to NH after hospital stay and is receiving therapy if you have medicare it might pay for up to 100 days. Talk to the NH admissions director or social worker about future financial arrangements. They should be able to explain everything to you. Everything about this journey is heartbreaking but hang in there and just take one day at a time. I do hope you get some answers and your life can get back to being somewhat normal. Good luck and I will be thinking about you friend.
AliM, thank you for your kind words. Drugs are blessings and curses. HB is not getting any of the drugs that were being given for behavior issues and seems to be doing well without them. So far he is showing enough progress that they will keep him a bit longer. I have appt with elder care lawyer in a couple of weeks so have to gather all info she neeeds by then, hard when i haven't been home that much. All of us here at Joan's have such heartbreaking stories that only we can relate to, so many people just don't get it or even try to. Must get moving, lots to do today.
I placed my dh in an alf at end of October. As long as my dh is mobile and says my name I don't think the heartbreak will ever go away for me when I leave him. Hardest thing I have ever done. When I leave him I say I am going anywhere except "home". I say shopping, gas station, dentist, etc. I live the life of a widow with a husband who is still living. I am so very lonely. I try to keep busy but the mind keeps on working. I am an avid reader and right now I can't even read. I guess you could call me a mess.
Hi Susieq, Looks like you are fairly new here.....WELCOME! Sorry you have to be here, but we all understand so you are in good company.
My DH has been in the Veterans Home for a little over a year, & while he is pretty unaware of things, he still knows me (most of the time). I agree, it is heartbreaking to leave, especially at certain times. He is in a wheelchair & yesterday as I was leaving his aid was getting ready to wheel him to his room for his afternoon nap & I looked at him one last time & he winked at me. It was almost too much. I almost started crying right there. I told the aid, it's almost easier leaving when he doesn't know me.
I agree, leaving is the worst when there is begging to go along, stern insistent looks, pleading, pouting, and guilting. DH never, in a million years, had these behaviors before this disease. As if placement wasn't hard enough, now there is this to deal with. Why does it have to be so unrelentingly hard and painful for SO LONG??
In placement, whether it was hospital, rehab or ALF, my husband often asked me to leave. He was not violent but had a behavioral flag. So, I just wanted to comply so that his behavior would not escalate.
I took my cue from him. He always asked me to leave but never told me to go home. Usually I would do something he liked first, like hand him a magazine or refill his water. Then I would say "as you asked" I am leaving now. Usually I would also ask if I could return at another unspecified time. Generally phrasing things this way worked well, or at least calmed him because he felt empowered.
Shirley, I was also an avid reader, as was he. During the last three years I did not have the attention span for books but enjoyed thumbing through newspapers and magazines. Not on a tablet- I've always preferred the paper versions. And btw, the enjoyment of reading IS coming back.
Elaine- that wink you mentioned, so bittersweet. It would have (and has) made me tear up just reading about it.
marche- is there any way you can make it seem to him that it is his idea you are leaving- maybe to bring him something he has asked for or will please him?
abby* yes it is bittersweet. Today when I went to feed him lunch I don't think he actually recognized me. He knew me as someone he knows, but not his wife, but that's OK.......just part of the disease.
Dorie, this brought tears to my eyes ... "i could not withhold feeding tube when he stared us in the eye and begged for food" Good Lord! That would have done me in *tears* All we can do is follow our hearts. I am glad he is eating again, it helps you to know you made the right choice for you both. So sorry you are facing so much, sometimes it just seems too much to bear. ((Hugs))
Elaine, I know you will think about that wink often and I am sure you treasure the moment.... even if it did almost make you cry. Hugs to you my friend ((Hugs))
We are going on 5 years in Feb, to this day it is HARD to leave. I want so much to just scoop him up and run for the nearest exit! Accck! He hasn't asked to go home for years now, not since he transitioned in the time frame they told me he would (3-4 months) Marche when he did do that I thought I could not possibly survive it, my heart goes out to you ((Hugs))
Shirley, You put it perfectly. You feel like a widow but you aren't. I also am very lonely and don't have the energy to do much. No one can understand what we are going through except the people on this site.
I read a comment recently about missing the stages we went through before because we had more of our partners then. I remember feeling like that. My wife has hardly said any word since she went into a nursing home almost two years ago. It's only tonight that I'm thinking that at least I could talk to her in some way. I also realize tonight how much I would love for her to recognize me - to react to me.
But I think I might feel this way because I don't have those things. I think it might be more true to say we're immersed in what we have now and we only have these thoughts when we're looking forwards or backwards.
When there's no spark of recognition between you of any kind I think it's different. The last year I had her and more there was no moment I recall where we passed anything meaningful between us such as a hand squeeze or smile or word.
I'm in the quiet whirlpool where I keenly feel her loss tonight. I came here realizing I haven't gone out by myself to anything of my own including dinner out for the almost two years I've been home alone.
But I also understand tonight I've used a lot of that time just sitting quietly finding ways to digest pieces at a time. I've never been an adult alone. I've also never initiated a life change of any kind I wasn't already connected to. I knew everybody in my senior year when we first started dating. I went to university already firmly established with her. I went to my first job living with her. We met our friends through work mostly and activities we did together. All the things in my life has been continuous - changes came to me from places I was already connected to.
This is the first time in my life I'm staring out a window realizing I need to connect to real things and knowing the planet is teeming with things to do; but, understanding that I've never in my life picked something new and went to have a look. I've never understood so clearly before that I've never been that kind and have almost zero experience stepping into something new which I have initiated.
I've come up with two ideas. Get my butt into a restaurant booth and go to the Santa Clause parade. At least I can be among people and look normal for a bit.
I read all the comments on this thread and hope everyone's ok.
I wrote some months ago about a powerful guilt episode I experienced. I've been more aware of how barnacles grow on ships if they're not brushed off in the same way that I have a tenancy to take on 'responsibility'. Which is a kind way of saying I blame myself for things in ways I blame no one else and I don't know I'm doing it.
Yesterday I had a different episode that once unleased lasted for hours. This episode was the truth I can't afford which is that I hate all this so intensely and am so thoroughly unhappy inside that I can't stay in that truth or I will evaporate in the sun like a puddle of water.
I'm going to have to get a rag when it's fully light and go around cleaning where I was wailing because there's dried up goober all over my shirt and on the kitchen floor where I had my epiphany. I need to close my mouth when I'm having real feelings because it's hasn't got good housekeeping's seal of approval.
There isn't any part of me that accepts it's alright for Dianne to get this. There isn't any part of me that wants my 'new life' without her. The only truth is that I feel miserable inside when I take the tight leash off.
Nothing is suprising. I loved her intensely and all by herself she was my entire family. No one else has ever entered that part of me that opens all the gates wide and not only lets someone in; but, has a desperate need for that person. Without her, I've been critical of my friends and real family for not closing that gap for me - which they didn't and couldn't.
What I haven't done is go out into the world again. I'm not ready to build a new life with real connections to new people. One of the places I've done some of that is here. Where I tell the truths as they happen.
I do love life. I've been hurt badly and I'm scared deep inside as every sane person is of facing later years with such ravaged sensibilities. I have a lot of company though and there really is only one path. Be willing to be hurt more. Or give up. That's not happening.
I'm shocked by the intensity of living through my true feelings breaking through my dam. The cats must have wondered what ritual I was performing when I was jumping up and down crying "I DON'T WANT THIS!!! I DON'T WANT THIS!!" Drool flying out in an uncontrolled fit.
Too much information for some. I apologize for that. I prefer my information raw and uninterpreted. And if I thought by trying to be strong and move forward, I had magically changed reality, then I wouldn't be working with reality.
All I learned last night is that the feelings I already know I have and have expressed above are more powerful than I like to think about. And frankly where it's unhealthy to think about too much just as picking a scab repeatedly is unhealthy. The scab is where hurt is that is healing.
Wolf, you are often on my mind during this journey we share. As I have read your thoughts lately, I wondered, has he really gotten "through" a phase, a tough one that I have not realized yet? I keep reflecting on how you talk about Dianne not knowing you, and sometimes wish that I knew if Dado really knows me, would it be easier for ME if I knew that. Could I let go a bit, of the rushing to his side when I have missed a visit for two days, of just thinking of him constantly, in every move and dream.
I believe I understand each word you wrote above. I know how much that hurts. And I hope that it loosened you up just a bit, that when the dam was bursting a bunch of that undeserved guilt went roaring out to the ocean of tears. I send you true friendship and caring.
I seem to have a formula now. 75% of the time stoic, pushing on, seemingly ok but as I know very well, a big undercurrent of grief. Then, 25% of the time, simply deeply sad and often sobbing. I fear it when it starts to come on, but usually it is the kind of tears that help. Ugh when they don't help it is horrible.
Hi everyone. I am so thankful to each and every one of you for opening your hearts and sharing your journey. This website has been a life line for me.
I want to ask here as I am getting concerned about myself. My husband went into care one year and ten months ago. He is accepting of his home and does not give me any grief about wanting to come home etc. For that I am most grateful. There are ongoing behavioral issues such as last evening the nurse phoned to say my husband slapped another man hard on the side of his head. My role now is strong advocacy which of course involves all kinds of meetings, phone calls, etc. I am happy to do that although it is so draining.
I find though I am stuck. I have gained 30 pounds, used to run daily and go to aerobics and do not do those anymore. My self esteem and confidence seem to have taken a beating. I struggle with what this new "single" life means and who am I now. I seem to be withdrawing more from others as I feel like I am not good company. Some friends and family have pulled away which I know can happen with this terrible disease. I am getting grief counselling and doing lots of reading. And cling to this website as a life line.
How long does it take to feel some kind of normal again, whatever that means? Does what I am describing ring true for any of you?
Although my circumstances are different from yours, I feel a kinship with what you have posted:
"I find though I am stuck. I have gained 30 pounds, used to run daily and go to aerobics and do not do those anymore. My self esteem and confidence seem to have taken a beating. I struggle with what this new "single" life means and who am I now. I seem to be withdrawing more from others as I feel like I am not good company. Some friends and family have pulled away which I know can happen with this terrible disease."
I am different because my husband really had no time in placement. He had FTD and was hospitalized, sent to rehab and then to ALF where he died after only a few days. Before hospitalization his px was in terms of years- so I too was "suddenly single". Caring for him his last few years at home was beyond stress. But, while he was home I did better in many ways than I have since.
I have always had to work at my weight, ate less from the stress and was just so busy. Once he died I promised myself I would achieve my goal of moving. Progressed somewhat but then PTSD took over; I had a mystery inflammatory episode that was treated with prednisone and that set the stage for the weight to slip on like a heavy coat.
And have I moved- no. I do exercise and have started to read more. I have always had a high need for alone time and I certainly have it now. I think of things in terms of alone, solitary, and isolated. And, most of all, stuck.
This week has been so difficult. I moved from the small city where I have been living to the big one where my DH was in LTC. I was a difficult move as my house didn't sell so I took it off the market and left it with a caretaker, I'm comfortable with that. DH came and helped me get set up but he had a very difficult time and I had to prompt him to know what to do and where things would go.What was storage and what was recycle. He has always been so sure of himself and knew just what to do and where to put things. He did a great job and I made sure he knew it, but it took a tole on him . I had trouble getting my internet set up and his job was to do just that, but he told me he can't do it anymore as he can't remember where to go to fix thing anymore.So I called our Son and he walked him through it and he was able to get it working. He asked me to take him out for coffee and to Walmart and then go to my apartment but after we stopped and got gas he asked me to take him home. Home is now the Manor where he lives. He said that to see me on a facetime, which is a skype type program for the iMac computers, was going to be enough for some of our visits and then he would like me to come and have coffee with him there. He told me he wants to sleep in his own bed there and made sure I was alright with this. I told him it was fine and that what ever is best for him is going to work for us. I was told by my Social Worker that this would happen and that he would not feel safe or comfortable except at the Manor and that I need to be prepared for this change. I was, but it still caused a lot of pain, and brought on the tears. His memory is getting worse. and he is withdrawing from activities and social times at the Manor. If our children call him he just speaks for a few minutes then want to hang up. I guess he has now gone into a new stage of this disease and has begun to live in his own world. There is no stopping what is happening and I will just have to walk with him the rest of the journey. It is such a lonesome journey now. I am taking Tai Chi Chih at the senior center here and it helps. This a gentler form of Tai Chi and with my arthritis it is better for me and I really have to focus when doing it.. New programs start near the end of January so I will look for another program to take and maybe I will meet some ladies to have coffee or lunch with every now and then. This is such a terrible journey to be walking but it is what I have and there is no point feeling sorry for myself. When he decided to move there I know he did it for me because he knew it was taking a terrible tole on my health both pysically and mentally. He keeps telling me that he really loves me and I believe he really does.I hope he still knows how much I love and miss him.
Hi Jazzy I am glad you were able to update us on what is going on with you and your DH, as I had been thinking of you and wondering how your transition was going. It is truly hard to see our loved ones deteriorate. "He keeps telling me that he really loves me and I believe he really does. I hope he still knows how much I love and miss him" Jazzy, I am sure he does. But you know that being is the Manor is best for both of you, even though it is difficult.
Tomorrow will mark 3 months since I placed Clare in assisted living. She has made a beautiful adjustment for which I am very thankful. I had postponed hip replacement surgery until after she was settled in, and sure enough while I was hospitalized and in rehab Clare's world fell apart. Unable to visit her daily, she was agitated each evening, crying because she missed me, etc. Our daughter said the ALF aides were calling several times a night asking if she could get on the phone to calm Clare down. Now that I am on the mend , walking with a cane, and driving again ... and back to visiting Clare each day from roughly 3-5 p.m. ... Clare's world has become a good and safe place again. The nighttime calls have largely stopped. But that means that now I must deal with my new situation of being an almost 67 year old single man. The loneliness at night is still the worst part for me and that's when I miss Clare the most, but I'm hoping that as my hip heals I'll soon be able to get back to physical activities I had to put off when I was Clare's 24/7 caregiver and also dealing with excruciating pain even when walking. I am looking forward to working out again, bowling, golfing, etc. Will I start 'going out' to see movies, plays, etc. by myself for the first time in more than 46 years? Will I want to go out with friends? Will I want to seek female companionship? I honestly don't know the answers to these and other questions, but I'm not ready for that yet. Right now, long walks to deal with the aftermath of my hip surgery will be all that I expect to do for the next few months. Then ... we'll see.
acvann I hope you heal quickly! And I am glad your surgery is over.
A good and safe place, that sounds so wonderful. Yes Dado is in a good and safe place too, thanks this season for all that.
I of course have all those feelings too, how will social life and companionship be? Now...though...that life is "on hold" , Dado is my all. I do have friends from Canada coming for over the holidays, to stay with me. I am very glad for that as it is very quiet here, and they can make me laugh. They also love Dado.
Allan, I am glad to hear your surgery was successful, and that you are on the mend. I am sure Clare is very happy to have you back in her world - it was probably frightening for her not to have your reassuring presence each day. I think you are right just to focus on the here and now. Good luck.
Although I'm very happy with Clare's placement, there are things that the ALF could have done that would have made her adjustment ... and mine ... easier. As is my habit, I've been writing about the process of selecting an ALF, adjusting, etc. Today one of my articles was published online in McKnight's Long-Term Care News & Assisted Living ... "Four ways for assisted living operators to facilitate transitions." Some suggestions may be helpful for readers of this site as well.
Really good points especially the meeting every 3 months. I had to go and find the administer and tell her I wanted an intake meeting so I could express any thoughts and concerns with them.
Also that staff take into consideration the fragile stage the caregiver is in after years of 24/7 caregiving. I had a LPN....well I felt like I was being attacked...demand to know why he is here and "she" didn't think he had dementia or there was anything wrong, plus more things .......Guess all those doctors I took him to don't know anything. Bottom line she doesn't have the qualifications to make a diagnosis. I went and talked to her supervisor and explained what had happened and said maybe they should have a inservice about how to treat the family/caregivers that are new to LTC and what to say/do and not say/do.
Little things like how to get his clothes labeled for the laundry....I ask several times to have his clothes labeled until finally one care aide said he was too agitated when she went to take them down....so just tell me. I went in and explained to him that his clothes had to labeled so other patients didn't take them and that there were things missing and we needed to take get them labeled to be able to find his clothes. Simple fib but it worked. If they had just told me earlier then he wouldn't of been wandering around in dirty clothes and smelling.
DH has decided that he only has nightmares when he is styling at my apartment so looks like no more sleepovers. The Social Worker was concerned about my bringing him here over Christmas for two nights but it was fine but for the nightmares. I think it is no longer a good idea to have sleep overs anymore and I will be meeting with the team to arrange for his care plan. This place is very good. DH is still able to let them know what he likes and what he doesn't like and he stand up for the other residents as well. I am told he marches into the Director of Cares office and tells her if he doesn't like something and he can't get it taken care of at floor level staff. The senior staff think he is great and there have been a number of changes and back to basics since he has moved there. He finds it difficult to be in my apartment as he says it is my place not his and he often find things he wants to change but he can't as it is not his place and they frustrate him. I guess it will mean that I will be going to visit at his home from now on. It's no longer our home but his home and my home. This is so hard for me to live with as it has always been ours in everything. Breaks my hearts.
Jazzy, After a death, I read you have to find "a new normal". Guess that's true when taking care of ALZ. LO. I know I've got to figure a way to take care of myself more. Have to hire more caretaker help in the home. I'm in my DH's world with only us there 24/7 and sometimes I don't even know what the "other", "normal" world is like any more. If I don't begin pulling myself out and it continues as it is, I have a fear I want be able to after he's gone.
I have been alone since placing dh in October. I knew I would have to do it but was hoping I could wait until after the holidays. It was not meant to be....dh became too difficult for me to care for. The holidays have been grueling. First time in 59 yrs. we have not been together. I don't think I will ever know what "normal" really means. It is like living in a "twilight zone." I miss his voice, touch, just seeing him on the other side of the bed. Sometimes I think he is in the same room as I. At the same time, he is really gone from his body. I spend time at the ALF with a stranger, really, and come home to mourn the man I married.
Thanks so much for your comments, that is exactly how I am feeling. I'm out in this space and just floundering around. I don't know where to start to build this new life they tell me I must build. DH is continually telling me to get out and meet new friends, just anyone so I am not alone. I now realize that I don't really want new friends, I want that wonderful man I lived with for 43 years. I miss his teasing, his laugh his making me a lovely dinner with candlelight and wine. I miss travelling all over Canada and the U.S.A. I miss spending winters in Florida and winters in the Canadian Rockies. I miss him just being there for me. I miss hearing him getting up and walking down the hall to the bathroom, then crawling Into bed with cold feet and hands and putting them on me and getting a good laugh out of my squirming to get away. I miss waking up when I am sick and finding him kneeling beside my bed and asking God to look after me. I miss his warmth, love and compassion. Now I have this person that looks like him and every now and then acts like him but the love and carling person I once knew is not there. Oh, he looks the same and he tries to show that love and caring but it is not the same. The warmth is gone and there is often an agitation with me that was never there before. He gets inpatient and pushy very quickly and then you see the different man. You see the Dementia. You see and experience the disease, and your heart breaks. It's so difficult for him to maintain that facade of the past when the present is taking over and he slips in and out of it. Not totally gone but not totally here either. There are times when I wonder why he is there in LTC and then he gets aggressive and agitated and I know why. Then I am again alone in this new world I live in now and I cry for what was once us. I'm told by those who have gone through this before, that it will likely take a year for me to get my life organized for just me, but I wonder if it ever will. I hate to leave him there, I just want to bring him home but I know that can never be again. Hugs
Hopefully, each of us will find our 'new normal' in time. How much time, I don't know. But I can relate to so many things so many of you have written, and have touched upon that as well in a forthcoming article. But writing about it and actually getting on with my new life are two totally different things. All I know for sure is that seeing Clare each day is both a high point and low point for me. Seeing her beautiful smile, making her laugh, making her happy, hugging her kissing her ... all of that is SO nourishing to me. But accepting that 'life as we knew it' during 46+ years of a wonderful marriage is gone, goodbye ... and then going back home to an empty house ... quickly becomes the low point. As so many of us often say, though, it is what it is and we simply must deal with our 'new normal' the best way we can.
We do have to deal with our new normal the best we can and I also hate this part. I know I hate it because I rail at everyone I've ever known in my mind pointing out the deceits those that are comfortable in their normal seem to have in abundance. I'm jealous.
I cannot invent a new normal. I can work at recovery more earnestly and honestly than many and that might be described as working through the negatives. I also have positive feelings about being here and I work to develop those too.
I fall down completely at creating a new life. I also have to be honest that I don't believe in any new life at all yet. For example I haven't had a single thing in two years where my reaction was that I want to go and do that thing or go to that place in and of itself.
I strongly believe one of the early keys is to not look at the big picture if we have no solutions there and instead focus on single and simple things we can accomplish - and by accomplish I mean value some single or simple thing. In my first year I had one mantra which was protect me while I take steps in that highly vulnerable period. I was right to just try and help myself through because I was a mess that first year.
The second year is where all the changes happened in feelings. Many refer to this as part of acceptance; but, I've never heard a working measurable description of what anyone means by acceptance or how anybody is going about 'healing' from this...another good fuzzy word.
My feelings came back. I didn't realize I had been reduced to reacting to things because my feelings had been blowtorched forever. I understood that AFTER they came back and they came back all at once for some visits and then moved in again. I don't know what experiences other's have or had.
I believe healing is helping myself and acceptance is I'm as absorbed in where I am and what I'm doing as anyone is. That for me was a journey of transformation where helping myself became what I was. Today I can make jokes about getting up to another day in the salt mines; but then it was serious. I can say I was a mess but it's more accurate to say I was extremely vulnerable to serious clincial states such as extreme depression, suicidal fixations, grief, and a powerful detachement to feelings I had learned over the years - just to name some of them.
I don't know what other rational response there is except to dedicate our lives to helping a human being out of such states. The very first step would be to 'accept' that it is us that is suffering through what specialists can confirm for you are serious mental and emotional life challenges.
I can guarantee that many get up in the morning struggling honestly in their life. Which is a lie. You get up every morning and remind yourself to help the emotional cripple which is what every single person who placed their spouse after years of struggling is. Accepting THAT necessary truth (for some time) and rolling up the sleeves to help yourself is what's hard for most.
It's much easier for some reason to continue the charade that the torture you've endured for years before being railroaded into being alone after abandoning your spouse suddenly IS YOUR NORMAL LIFE.
I placed my husband is ALF in late August. I just got word today that my Medicaid is going through and he will be assigned a case worker. My husband has adjusted pretty well. He is in a locked assisted living dementia unit with 20 other residents. He does not make a lot of sense when he talks, needs help with showering, shaving, teeth brushing and constant prompting. He has urinated in waste baskets but has not been incontinent as far as I can tell. He is very compliant and very child like. My issue is this. He still knows me and the kids altho cannot name the kids. He is aware of what is happening to him with his brain. Someone in one of my support groups told me it is unusual for a person to be this aware. It is a good thing and can be not a good thing. He does not engage in the activities that they offer and seems to be totally dependent on my visits or the kids visits. I have been visiting 2 times per week and usually take him out to eat or to church. When I call he says where have you been as he does not remember when I am there . Some of the residents are conversant and he does talk to them but several are nonverbal. He has a visitor from the hospice navigator program visit so he has visitors. He keeps asking me to take him to see the house but he cannot remember where he used to live. Should I bring him to see the house? Also what would be some good questions to ask the case worker?
CO2, we are on the same path right now. I placed my husband in October and he is much the same. I'm not sure what Medicaid case workers do. It has been helpful for me to talk with the ALF staff through a case manager to work on an activity plan for DH since he doesn't participate in the regular activities. They admitted that it is a challenge since he is far younger and more mobile than the other residents but have found things for him to do (he helps carry things with a staff member to other areas of the ALF, he helps maintenance sweep the floors and vacuum, they put him on an exercise bike several times a week, they give him "documents" to sign). They are constantly working on his "activity plan." A very odd thing happened when DH was in day care. They often went out for rides in the bus and one day happened in the neighborhood in which DH grew up. He became very animated, told the driver his house number and started pointing out houses and who lived where and telling funny stories (like his pre-AD self). They were dumb-founded and when it came time to leave, he lapsed back into his Alzheimer world. I had avoided the area thinking it would be upsetting to him. So one day after this, I did drive to his old neighborhood. All he said was, "Can we go? I don't want to be here." All I can offer to your question is this: consider whether he would become depressed or agitated by seeing the old house. Or you could just drive in the neighborhood before driving past your house and see if he recognizes the neighborhood and how it affects him. Do share with us what you decided.
Thanks marche for the suggestions. I think I will just drive by the house instead of bringing him in and see what happens. I do not think he would become agitated and I do not know if it would depress him to see the house as I have changed things since he left. Excellent suggestion about getting the case worker involved in an activity plan. I think with Medicaid I can get him some physical therapy. Yesterday I told him I went to the library and he says he wants to go because he can read. The sad part is that he can no longer read but does not realize it. I have tried cards and he cannot do that either. I think something like folding laundry or carrying things or wiping tables might be something he could do. Thx again.
Hello Everyone, it has been a long time since I posted. First came to this site when it was practically brand new in 2007. Still see familiar names and do read when I can. I have this weird post concussive syndrome issue which makes reading difficult. A nightmare for someone who used to read several books at a time and a rare bookdealer to boot. But what's one more nighmare to us, huh?
I do have a pressing concern for the board. DH is in the memory ward of a facility which has independent and assisted living plus memory wing. He has lost 15 pounds in the past month. He doesn't want to eat except for occasional desserts. He has had issues with aggression for years and i got another call Friday that he was sitting on the floor screaming, "help me, help me" and was afraid someone was trying to lill him and later I was told he wanted to kill himself. the dr. Put him on Seroquel and valium 3 times a day last time the aggression and yelling got to be too much.
He spent 3 weeks with me at my house in September and told me for the first time that he wanted to die. (I feel like that more often than not, but he has never shown any sign of suicidal ideation). he said, "not right now, today, but pretty soon I really want to be done.". He said.
When an AD patient doesn't want to eat, could that be their way of saying they want to go before it gets worse?
How much should we do for a person in late stage AD to keep them physically healthy?
his Dr. said one of the things to consider in increasing sedating drugs is the risk of falling. That reminded me of one of our best friends who also had Early Onset AD and died from complications from a fall. His wife and kids were so grateful he didn't have to life out the end stage in bed. And shortly after my conversation with Dr. i get another call from facility saying DH was taken to hospital due to a fall. he was released quickly.
DH has outlived all expectations. He has fared from better than I as I never gotten Major Depressive disorder (clinical depression) under control for long before something happens and I sink back, recently further adding panic attacks to my list of pathetic woes. i am so tired of being me.
Terry (now in North Bay of SF Bay Area)
My mother died last week and I probably would have talked to her about this stuff, so I return here seeking wisdom and support.
terry, I don't have much wisdom, but I can offer some experience and a lot of support for you. My DH was also in a facility which offered Independent/Assisted & Memory Care options. He was in the Memory Care unit but I didn't feel that they gave him much individual and/or supervised care. They made sure people made it to meals, were dressed, didn't get off the floor, had some activities. But as my DH suffered with confusion, paranoia, delusions, they didn't offer much to help him. I now have him in a wonderful Alzheimers Dementia facility and the unit he is in includes people with the same disease and at the same stage he is. It has reduced his agitation and distress a lot as they all move at about the same pace. Meds are also very important and, as people often say on this site, meds adjustment is an ongoing thing. Possibly meds for depression will help him become more content. My DH has been on several different behavior meds and none of them caused much sedation, at least not enough to affect his walking.
Regarding your question about how much to do to keep them physically healthy; my only intent is to keep my DH content and safe and loved. If he wants to lay around all day, there is not much I can or want to do about it. Sometimes he eats well and sometimes he does not. I often bring snacks in (cookies, apples, almonds/craisons, etc). Sometimes just something different will peak their interest for a bit. If he does not want to eat, I let him decide. At my DH's facility, I see some people eating less and less, but they do not seem to be suffering.
I am so sorry for the loss of your mother on top of all of this heartache and worry. Please know that we care.
some here opt for a simulant to try to get them to take in more nutrition, some opt to let them eat as they please. I don't think either way is wrong but what you think is the choice for your spouse individually. sometimes the eating comes in waves, even in late stage 7 my DH eats half or less of what he used to and is still in fair shape. you would think with the loss of nutrition and less they would succumb more rapidly but I think the body does adjust. my idea is they will go when ready and not before. there have been many times I thought mine was in the dying stage and eventually made a miraculous comeback. like you my idea is to keep them as comfortable, painfree and happy as possible as we know how this will end and why not try to make it as good as it can be. so very sorry for the loss of your dear mother divvi
Hi Terry. First let me say I am so sorry for the loss of your mother. Losing a parent is always hard but losing a mother for a woman I think is the hardest if you've had a good relationship.
Perhaps you might want to call in Hospice for a consultation since he probably meets the criteria with his weight loss. They may be able to give you some good advice.
Your questions are ones each of us have to struggle with - what's best for our spouse and us. My husband is in good physical health and in late stage 6. So far I have elected to treat things that are treatable...broken bones from 2 falls, aspiration pneumonia with antibiotics because I feel he still has a good quality of life. As his disease progresses I am sure it will become more difficult and not as clear cut to make decisions regarding treatment. Feeding/eating I know will be a particularly difficult decision for me if/when the time comes. I know I don't want a feeding tube....and I guess if wants to stop eating I will allow that but it will be very, very hard on me.
Terry, Sorry you are going through all this now. I know the loss of my mother hit me hard.
When my DH doesn't want to eat I give him store brand Ensure or Boost. Since he will eat the sweets, that seems a good solution. He is totally in a hospital bed at home and is in stage 7, but hasn't lost any weight in the 4 months he's been on Hospice. He had lost 15 pounds in the 6 months before.
I can't understand what keeps him so healthy. I would think being in bed with no exercise would take its toll but all his vital signs are great.
I would never have thout of calling Hospice so thanks LFL for that. I will meet with them when they do eval on Thursday. They said they would call his doctor for referral. Have any of you heard of a doctor refusing to refer patient for Hospice? In the meantime his doctor increased his Seroquel dosage. Also I will get Ensure on his meds list otherwise they are not supposed to give it to him.
I can't believe I am seeing so many familiar names still here especially Divvi.
aah yes, terry, I am still here. its rather disconcerting that so many have lost their spouses isn't it. we are still in the long battle of end stages. just when I think my DH has had enough he seems to rebound yet once again. for that I am grateful but uncertainty brings so much anxiousness as well. like nikki who also has her lynn still with her and an old timer here we just keep on knowing soon enough we will have to join the ranks of adding our * to our names. til then I keep adding to any topics I can add something too. good to see you posting again. divvi
I could never have gotten through the last few years without the love and support from you who have been here for many years! You are all my heroes. I love you all.