Today, after DH's visit with the doctor, I felt like I had been mugged. I wanted to go somewhere and cry, but I couldn't, because DH was with me. The doctor couldn't have been nicer, but it was still awful. Before the visit, I have to get all the paperwork together, and make sure everything is on the "doctor list", so we talk about everything we need to cover.
Then I get to sit there and discuss all the things nobody would ever want to have to discuss: all DH's medical issues, the physical therapy evaluation, his nursing home paperwork, his meds, and his prognosis. It's years now we've been going to doctors about this. I thought as we left the office how we get so matter-of-fact about such terrible things. Do you know what I mean? We have to discuss, on an ongoing basis, things that other people don't even want to have to think about. I remember one time, early on, when I was talking to a doctor, and I thought, "I can't believe I'm talking about all these things, sitting here logically and calmly discussing basically the ending of my husband's life, and I'm not supposed to cry or even choke up". It was like an out-of-body experience. And these experiences go on and on.
In the x-ray department, while I was waiting for DH, I heard the nurse talking about all the trips her husband has lined up for when they retire in a few months. It hurt my heart to listen to her. It's not like we didn't have other plans, too. Instead, at age 54, after several years of increasing problems, DH was finally diagnosed with this nightmare disease. Not only are we going to miss all those plans we had for retirement, we lost the whole decade before retirement, too.
I guess I'm kind of low tonight, but I really did wonder if you can get something like post-traumatic stress disorder from caregiving. Maybe it isn't so bad minute by minute, but when those minutes add up to year after year, it really feels like being in some strange parallel universe. I can see out, and see people going about the normal activities of life. But they can't see in. I'm invisible. But I'm still here, and I'd really like to get back out into that other universe for a while. The doctor's visit today just opened up some old wounds, and made them bleed again for a while, I guess.
The invisible comment is the one that stands out most to me. And when I read it, I thought of you guys here. I am not invisible to you.
And JanK, despite the fact we don't see each other face to face, and for the times of not responding to a hurting person, I think we all truly care in this place. There are days when I cannot face it here, and then, I see what the real world is like. Yes, more and more, people look away, and when they talk to you, they just don't seem to remember what is happening to your loved one and you.
I ache with you. Today I cracked a beer for the first time in awhile, and may have another. I savor it now, mostly staying very sober so I can take the best care of him.
Malama pono, it means take care of yourself. You are in prayer today.
You put into words what I can't seem to. We visited the doctor yesterday also. He was, I think, rather shocked at how my husband looked since our last visit three months ago. There has been such a drastic change in such a short time. He has lost 5 lbs since March, his appetite is practically nonexistent, he can't remember the names of his daughters, let alone his grandchildren, he can't participate in a conversation, he lies in bed most of the day, the only exercise he gets is bringing in the newspapers in the morning and getting the mail later in the day. His toileting issues are getting bad again. There was a reprieve for two years and now it begins again--I don't know why. He showers but not well. I had to help him the other night, the first time in a long time. We can hold a conversation but he forgets what we talked about almost as soon as it's out of our mouths. I've been fighting against getting help. When I had difficulty with the showering last night, I told him we were going to have to get someone in to help with that. He became so angry, said he didn't want anyone helping him.
The doctor looked at me and told me the disease was progressing more rapidly, that I should be prepared for anything and that I needed to get some help. I knew it. I heard all of this before. It isn't anything new. I just didn't want to face it. I think I've been pushing certain things out of my mind because I didn't want to face it. He told me I had to take care of myself. I think he must have seen something in me he hadn't seen before.
Malama pono. Take care of myself. I hope you don't mind my using the words of your beautiful language, Coco.
Bev, oh what parallels so many of us are on! Today the regular Jehovah Witness lady came by, I am nice to her and take the little books. She said, oh I saw your father in law the last time I came. I said "Who?" Then, Dado came out the door to the deck and I said, " You mean him?"
She could not believe how much he had changed. She thought he was some one else, all this in 6 months.
Bev I see you have been on this journey for a fair bit longer that me. Your posting has also touched me deeply, and I offer a sincere prayer for you and your family.
And I forgot to mention JanK, that one time I was hurting so so bad, at 3 am, and I wrote a thread on here. Not expecting any thing back but hoping all the same. I sure it was Divvi that responded to my cry for help right away, and it helped so much. We all know and watch out for each other.
Those are beautiful words, Coco, just as you are, inside and out.
Jan K,
Last week, on another thread, Nikki and then Coco brought up some profound ways of looking at acceptance. That started me doing some research, as I had said I never accepted husband's illness; instead, I felt levels of resignation to it.
My research derailed as it went mainly to blogs where posters discussed their differing interpretations of those terms.
I went to an old textbook. "Treatment of Complicated Mourning" and was up for two nights reading and re-reading.
The author says that terminal illness can go on for just too long. It is more than depleting; it is more than caregivers can experience without psychic damage. It is the day to day loss from which there is no reprieve. Granted, it is an old book. At the time, the author reported that studies said the caregivers psyche reaches a limit at 18 months!
Bev,
My husband's general N said late last year "the decline is severe, but he could go on like this for 30 more years". I don't know if you want to know the thoughts and fears that provoked for me.
Back to Jan,
Husband had hoped to retire "early" at 60 or 62. He missed that by a decade, and that's not counting the years before he died and all that was lost during that time.
It seems we all are on about the same page....with maybe a few changes. I am still on my respite and still have spent most of the time just staying home and enjoying every minute of it. Most of our doctors see what this illness is doing to us. I am so glad most everyone that knew me said...You have to get away from being a caregiver for at least awhile and they were so right. As our dh's start this down hill slide...we all need to do this if we can figure out to do it. It is like preparing for what is to come and what is to come is something that probably will be worse then what we are facing now. We need to be rested and have the emotional strength to carry on.
I certainly encourge all of you to try and figure out how you can get a least one solid week away from your dh and rest up and/or do something just for yourself. We have earned the rest and we will need more strength to carry on. I have been amazed at how well my dh has accepted the ALF. Of course he would rather be home, but he knows I need the rest. He is well cared for and I don't worry about his care. I do think he may have gone further down hill since he has been there, but we will see when I bring him home next week.
Jan, I am so sorry you are having such a tough time. I don't believe our wounds truly heal until our journey is complete and we start to heal, from the inside out I would imagine. It is painful when the wounds are exposed again. I always felt I was being hit with a 2X4 smack in the face. It happened over and over and over again, yet I was always shocked at the next blow. Something’s we just cannot prepare for, even if we think we have.
Invisible, I remember that... it hurt. I am sorry you are feeling this now. I do believe Judith is right, in order to survive this with "ourselves" semi intact, we NEED breaks. I was never able to and it truly about killed me. Please, don't do that to yourself. It will not matter in the end how much we sacrifice, we can not save our loved ones.... but we must try to save ourselves. ((hugs))
Abby, so good to "see" you and it made me happy to hear you are working on healing. You did amazing, never doubt that! ♥
Bev and Coco, the steep declines are so difficult to come to terms with. My heart goes out to you both ((hugs))
Jan K & Bev, you've captured my feelings and emotions exactly after DH's visit to a new geripsychiatrist last week. Yes, he's been declining since his hospitalization last August-it's obvious to everyone. Yes, I know I should go to a support group or go back to counseling to help me deal with the emotional ravages inflicted by this disease. As much as I intellecually understand what is happening, I was not emotionally prepared to hear he scored a 9 on the MMSE. It brought back all the feelings of dread and fear I had in 2008 when DH was first dx'd; it made me sad beyond belief....and ANGRY. The drs. visit made me admit I have never accepted this disease, I've only adjusted to each change and loss but have never truly accepted it.
Jan, Bev ........yesterday as we repeated our 2nd ER visit in four days, the nurse said "can I help you dress your Dad?" I don't look young !!! The toll this disease has on our spouses and how rapid the changes that come.....we all jumping off the cliff, free falling and we can't stop it. This group helps to soften the dissent but the bottom will come.
is it the moon or something? Here we have constant fog...and June Gloom.. But I am seeing the same things everyone is mentioning. DH is losing interest fast in things he always liked to do saying " I am running out of steam"..he gets up gets his meds, then falls asleep. Says he is listening with his eyes closed but I have pics to tell something else. I think it is two things contributing to this new phase which deserve a look...one is being put on Niaspan and the other is lower than normal BP. When I bring it up to the docs it doesn't seem to be a cause...
I am now in a place where if he sleeps more I can get more done I suppose. But just as I plan out a day to get something finished, he has a tooth ache...so we spend days going to the dentist and endodontist and then back again only for there to be no symptoms now and are on a "watch"...or cardiologist appt or pulmonology appt or PCP or something else..grocery or drugs store or something and no time for window shopping for me...I am sick to death of this damned disease taking everything away.
I hear about others going on trips of one sort or another....I am kitty sitting for one friend and picking up the paper for the neighbor..one going camping the other in Hawaii.....and the kids in europe wondering when I am going to come over this summer and dealing with a hubby with changes and my beloved Ebonie has started having some kind of seizures...The only real joy right now, and they are work but fun, are our new kittens, Xena The Warrior Princess and her best friend ( and tiny sister) Gabrielle...they keep me entertained...
The rest of the time is just drudgery. I don't even like to look at our wedding album or any of our other pictures that take me back to better times when now he can't even remember that he put in the sidewalk or painted the house with me or put the tiles or parquet flooring down...none of it..hell I don't think he recalls anything we did together in the past 38 years other than I am his wife ( yeah he still remembers that) but lately I think with all the military movies on TV he is back in his cockpit before he knew me...He has been flying in his dreams...he was a single seater but he was also an instructor so I think he is training pilots some of the time...what else when he yells " Pull Back" " use force"....
I have the June head-cold. Maybe worrying about that annoyance is keeping me from noticing the gloom so much! Totally get it though. I'm just in the process of re-aligning my thinking now, so instead of getting sad when people talk about trips with spouses, I can think of what I might do as a single. (Does this sound overly optimistic? It is...I'm just trying.)
Jan K, I have thought about the idea of maybe having something like post-traumatic stress disorder. I have days where I have a hard time making it through a day. And the fear in me wells up with the thought of disasters to come. I have my youngest DD who is starting driving, and going with friends who are new drivers. I have an older DD who along with new SIL and xSIL are ALL going to Afghanistan in Aug. I think, God saw fit to give AZ in my husband, what is to stop him from taking away someone else I love. I don't want to go forward. All I see is doom and gloom. Heartache and pain. Some days I see no reason to go on. But I go forward anyways.....
I do thank you all for being here for me and giving me a place to let it all out. No one else would understand. Thank you for your kindness. You all are a blessing.
I don't know much about PTSD but I know a bit about Extended Traumatic Stress Disorder. We definitely have that! I am now in the 5th month of adjustment after Placing DH, after Caregiving at home, first because of Mental Illness, and then VaD--a total of 24 years and the clock's still runninng. The first years were easy.DH was functional, could drive, go places and do things. That changed. He was Dxd with VaD in 2006, just starting Stage 5. As he progressed my world, like ours, shrunk. In-home help came aboard. By Jan. 2012 his help--16 hours a week and my own 4 hours eased the pressures but there were still alot of hours a week when it was all on me. The transition I'm going through isn't easy, but is what you speak of wishing for. I am beginning forays into that "other world". I am still recovering from the shock of losing all my shedule and routine and having to make a whole new one. I have had to adjust to doing chores that were being done for us, because when DH went to the Hospital 16 hours a week of help stopped. At least I am getting a head start on this part of losing DH. in my 3rd year of Caregiving I was Dxd with Clinical Depression. I chose to take meds and go to counseling. The meds made it easier to function while the counseling helped me learn my triggers and how to deal with the problem. I recently decided to go back on a small dose of antidepressant, because I'm hitting some rough patches in adjusting.The key thing though is that we all have to reach acceptance of our situation. We each are responsible For Ourselves. We have taken on responsinbility of certian things for our LOs. The disease will progress. They will die. And we will then find ourselves grieving their loss. But we will also recover and will be able to reach out to and rejoin that world out there. Placement is giving me a chance to start outreaching earlier. It isn't easy, but it is necessary. Any chance you can get, make, grab, make contact, outreach. It will help down the road. DH now has a 2nd Terminal condition, which, were he healthy could be treated, but because he isn't, cannot. Itis a blessing, because most with it slowly fade and die easily. We have about a year, per the Cardiologist. Hospice has come aboard to provide Palliative care. And then I'll grieve again before I rejoin that other "normal"(?) world.
I have accepted my husband's illness and most times I've been so patient it even surprises me. Coco, we were diagnosed in 2008 but he's had symptoms for several years before that. Things had been going rather smoothly until the past month or so. I thought, with summer and his ability to go outside more, he would feel better, but that hasn't seemed to happen. He's in his mid-70s and I'm in the lower 70's so I don't think we have 24-30 years more of this, but the thought of the rest of our lives being this way scares me now. I really didn't think it would last this long. It's probably been about 10 years since this started with it escalating after heart surgery in early 2007. I think I've been pushing the thoughts of him getting worse out of my mind, not really dealing with it, just accepting the way it's been for about 2 years. But, suddenly, his memory went bad so fast! Or maybe I wanted to think he wasn't losing it! I can't really say.
When I read what some of you have gone through or are going through, I wonder at your ability to make it through, especially Carosi and Vickie, who have been going through it for so long. I hope I can continue with the grace you have. I'm trying so hard to be strong and not get impatient with him. It hurts so bad to see him this way I can hardly stand it.
I do have some outside interests and my kids saw what he was like when we were on a family vacation recently and are getting together to give me a break now and then.
Dh has gone downhill so rapidly. Just three weeks ago I could leave him alone for a couple of hours. I always left a note on the cabinet in our regular note leaving place stating where I was. Now he "shadows" me all over the house. My sister have been visiting this month and I've been able to run errands and go to water exercise twice a week. She tells me he constantly asks where I am over and over. I know she will be happy to return to her home. Her husband had dementia from a stroke for over 20 years but it never progressed to the stage dh is in. He continued to drive - altho that shouldn't have been - and she tells me now they lived separate lives in many ways. He passed away four years ago. Bedtime is nerve wracking for me just getting him ready for bed and when I finally get to bed I'm exhausted. I do have many good friends who have helped with repairs, etc. Men from our church have signed up to come sit while I go to my water exercise. They try to help me "get away". My whole life has been wanting to be with dh not get away and now I find that I must have a little time when I'm not answering questions or telling him what to do. It has been two years since this disease became so evident I could no longer deny what others saw. Now I look back just a month to better times. Everyday he is worse than the day before and I don't know how to be a caregiver! Sometimes I almost panic and think who can I call who can help and I realize no one it's up to me. I still feel so sorry for those who are so young going through this. We've had a good life and got to do most things we planned after retirement. However, it is still extremely painful to see the love of my life end his life this way. My prayers to all who are living this nightmare.
How I relate to all of you. I am in the same position and I can tell you I was a breath away from who knows what...but, I knew I could not continue this terrible routine I was in and a prisoner in my own home and taking him out was such a chore he walks so slow. I hated my life and I was almost beginning to hate my dh.
I bit the bullet and he has been in the memory unit of an ALF for two weeks. He will come back home Tuesday. I can tell you right now I feel 100% better then I did two weeks ago. I had all kind of things planned and I have done very little except stay at home in my home that I love and I have not missed my dh one minute of the time. I have been to see him about every other day, but stay for only an hour and I have taken him out to eat a few times. When I see him now I can look at him with love and kiss him and hug him and tell him he will soon be back home with me and I enjoy the smile that brings to his face. I am so pleased I took this respite. It has been a life saver for both of us. A hour or two away at a time is not enough. You got to get them out of your site and rest.
I will have to adjust again and I will carry on for as long as I can. But, I will not let this terrible condition take me down with him if I can avoid it.
I think you are coping in an admirable way. Optimistic or realistic, or the best possible blend of each? For years I started out the day with remembering something positive about husband before the dementia and then thought about someting I would do "after". Did it help? I can't say if there would have been a difference if I didn't do this, but how will I ever know?
Mimi,
I know how special they are. Sending best wishes to you and your beloved Ebonie.
Yeah, but there's probably never a time when we'll witness mentally intact happy couples doing things together into middle age and beyond, and NOT feel wistful about it.
Know what I think about? For almost 30 yrs before AD entered the picture, WE were a couple doing things together that people could have observed and felt wistful about. Here's an example--years ago, Steve went on a job interview (he didn't know the interviewer). The guy told him he had been with us on a recent flight--he even described my engagement ring (of course, maybe he's a jewel thief on the side)! Just shows you how people are always looking at and thinking about others they encounter--it's normal, I guess.
I always knew we were tremendously fortunate to have each other, and appreciated it, but now that that's gone it's strange to be on the other side.
I was wondering if the moon was in a certain phase that affected them. Had to call the squad yesterday for Lloyd. He had 1 seizure at 7 and seemed to be getting over it and then another at 11. That just is not normal for him. He has never had a seizure after 7:30. Waved my POA and his DNR from the get-go. Told them no VERSED and no NORCURON. They gave him 2mg of Ativan in the squad and 2 more in the ER. Brought him home about 5 in the afternoon. Much better experience than last time April of last year. I rode in the squad and never left him. Asked what they were giving him and was in total control this time. Last time, I was not allowed in the squad or the ER. They gave him anything they wanted for them to gain control without having a complete list of his meds. They put him into respiratory arrest and I never saw a doctor until one came to ask if there was a DNR. He spent a week in the hospital (most in ICU) where he had no nourishment and no trips to the bathroom. We physically carried him home and had to establish a bathroom schedule for him when we got home and it took about a week of urine everywhere. I actually was able to walk him to the bathroom last night and sat him down and he went. He didn't eat much - a little yogurt and a little water. He kept wanting to get up and sliding to the floor in the bedroom so I eventually left him on the carpet until his bedtime Neurontin. After that, I put him back in bed and he remained all night, only having to be told to lay down about 3 times. On our way to the PCP this morning hopefully. May have to draft the grandsons for help. Haven't filled the scrips from the hospital yet. Will talk to the PCP first and see what he thinks. The ER prescribed a suppository used when they are having the seizure that is supposed to lessen the severity of it and 250mg of Keppra. I am not fond of Keppra, but last time they started him on 500mg. so...who knows?
sorry to hear this linda. we had a couple of harder than normal myoclonous here as well with the moons side effects. i am a firm believer it affects them during these times. hope your lloyd recoups soon. its a tough time in ER- divvi
Coco, we are all amazing! (but {{{hugs}}} and thanks! And God bless us all!) Divvi, how are you? I agree that the full moon affects probably more than we know.
For the over 20 years that I have worked in healthcare the time of the full moon is full of chaos and strange events. I am always relieved when it is over. Sometimes the dark side of the moon has a little increase in the unusual athough not as bad as the full moon.
Aloha to you as well coco!!~ i am very happy to read about your inhome help and possible respite in the fall. it is absolutely necessary for us to have some time away from AD and all the stress/misery that comes with it. it will do you a world of good to have that me time.
hi linda. we are good. DH has once again recouped from his TIA issues which were of concern a few weeks ago. its so amazing that we think 'this is it' when something major happens and a flood of emotions pass thru us like that blinding last moment of life that says our life passes in front of us in seconds. the resiliency that our spouses (and we ourselves) have to rebound is just mindboggling. none of us are immune to the trying times that happen each and every day with AD in the house, thats for sure. its good to be able to get back into the 'holding pattern' til next time, and theres always a next time isnt there! divvi