I've been here almost 6 years now. I guess that makes me an old timer, also. I'm still getting valuable advice from other old timers and sometimes from the newbies. My DH is hovering between late stage 6 and early 7. There is no time line, no matter how badly we want one.
I am here a little over 5 years and I too am grateful for all of you - "old timers" and "newbies". I've learned from each and every one of you and can never thank you enough for your wisdom, advice and support. Of course the HUGS too! I truly appreciate the ones with a * because their journey is over and I imagine many just want to recover from this journey and leave the pain behind. Yet miraculously many of you continue to share your experiences and advice and give a glimpse of what the "after" might be. Your strength and fearlessness is awesome.
Thanks to all...I couldn't have made it this far on our journey without all of you...DH is in the same zone as Dazed's DH hovering between late stage 6 and early 7.
I found this wonderful site in 2008. I have visited almost daily since then and recently became confident enough to add an occasional comment. While I was in my denial phase about DH you were my dearest friends. Although DH has never been medically placed in any stage, my guess is late 6 or early 7. Thanks to all of you for letting me ride along with you on this long bumpy road. Knowing you are here is my refuge and I send my appreciation to all.
Terry, it is so good to hear from you! But I am very sorry to hear of the loss of your mother ((Hugs))
Speaking for Lynn only, he was too far advanced to make any type of decision about not eating. Meaning no, I do not believe he was capable of calculating that if he didn't eat he would die sooner.
I think when our spouses go through different eating issues we have to work to see what has caused the change and go from there. I can remember well the times I came here posting when Lynn wasn't eating well at all. Each time it ended up being for a reason, one he just couldn't put voice to. Like a sore throat, a bad tooth, a flu, pneumonia, medications, depression (when he was first admitted) etc etc etc.......
And it is true what Divvi said, as they progress they just eat less. If they are wheelchair/bedbound they simply don't need the fuel that they once did.
As for hospice, I know one of the items to qualify is weight loss. 15 pounds in one month is significant. I would think he would qualify under "failure to thrive"
It is all very personal decisions, ones only we can make ourselves. My Lynn is a happy guy who still has quality of life. Therefore I went full throttle trying to get him a stimulant that would help him and researched different nutritional supplements that could help pull him through the tough times. It worked wonders for him! He has steadily regained weight since 2010 and has kept the weight on. He went from a shocking 92 pounds!!! To now weighing 132-136. He loves to eat again and eats like a little piggy :)
I pray they can get your husband on the right mix of medication to ease his anxiety and distress. It must be so difficult for you to see him struggling so. ((Hugs))
Yes Nora, I too treasure the posts from the dear friends I have made here over the years. Those of you who know me well, know that I go through stages where it is just too much for me to come here.
I care too much I think, therefore it hurts too much.
When one of our own spouse's die, it hits me hard. Then I find when they come in waves, loss after loss, I need time to recover from so much heartache.
Then on the other end of that scope is the posts about hating their spouse and wishing them dead, those post are just too harsh for my gentle heart to handle. It destroys my faith in humanity and I need to go off by myself and try to find the good in the world again.
I'm glad you keep coming back,Nikki. I sometimes wish I could hate my DH as it would mean that I could just walk away and not hurt anymore but that isn't going to happen. Right now he knows me but his empathy is gone so he can be pretty difficult especially with me. There is a lady here that has the same problem that I have with family. They come and visit with DH and take him out but never think that her or I need that kind of attention. He has lots if activity and company but we just have empty apartments and loneliness. This disease has such bad things for caregivers. This is such a lonely one.
Terry I too as sad that you have lost your mother, and things are so tough.
Nikki how splendid to see you, I miss you so and very much understand why you are absent. Oh how good it is to hear that Lynn is doing well. And I hope, that your health is manageable, if not good. We all worry about you here.
Jazzy how very true, how isolated and lonely we the caregivers are so often. If it was not for all of you here, and a very few in my life, it would just feel hopeless. And of course, my fuzzy loveable cats, my furry friends that heap their aloha all over me for free. Love to you all .
How much is the ALF supposed to do? I do all of the laundry except for sheets, I have a helper come in to check on him and assist with showering and washing his hair and I go daily and walk with him and sit at dinner for at least 60-90 minutes. That is a total of about 3 hours a day when we are relieving the staff. I clean the bathroom between their weekly cleaning and just wiped down all of the doors and hardware. At a recent "care plan" meeting I was told that DH requires too much one-on-one because he is very mobile and walks around and tries the doors. It seems like they call me (and the doctor) about everything - with the explanation that the "state requires that it be documented." Yesterday it was "he had several incidents of incontinence." OK, he wears pull-ups and is supposed to be taken to the toilet every 2 hours. He always goes for the aide and for me and incontinence IS part of the disease. What do they want me to do?? At the care meeting it seemed that the attitude was "we just don't know what to do? This is too challenging. He is too active (meaning he doesn't sit in a chair for hours on end)." They even suggested I might hire a full time aide. The doctor also questioned them on whether they were an Alzheimer's unit because they were calling about typical behavior that they should know how to manage. I think I erred in the beginning by being too nice and helpful and picking up the slack. Has anyone else had experiences like this and if so, how did you handle it?
marche, my husband is still at home, but when he was in a nh for rehab last summer our experience was similar. I hired an aide to be his companion for several hours a day to help keep him calm and compliant. The aide ended up doing a lot of personal care because the aides in the nh just figured he was being cared for and it was 1 less person they had to deal with (DH is not easy). The supervising nurse told me emphatically that the hired aide was prohibited from performing personal care due to liability reasons for the facility. But in reality the facility aides just stopped caring for him while the hired aide was there.
My advice on how to handle the situation is as follows. Read the contract you signed regarding the services the ALF is supposed to provide under the contract and highlight them so you know what is/isn't covered. Read any notes you took at the very first and/or second meeting you had with the staff when you were deciding on placing him in the ALF and see what verbal commitments they made. Review all the care plan meeting notes and highlight what they committed to regarding his care. Also document all the personal care you and the aide you hired are providing on a continual basis.
Once you have all this information I would request a meeting with the Director of Nursing, the Facility Director, the Admissions Director and the unit nursing supervisor. Review all the commitments that have been made in writing and/or verbally (having a document prepared with this information to hand out at the meeting is a good way to have a common plan to discuss and shows them you're serious). Go one by one and have them either commit that they are supposed to provide the service and if they are/aren't discuss why and what solutions there are to resolving their lack of care. I would ask the facility director the question if they are an Alzheimers unit/facility why is it the staff cannot manage him and provide the services you're paying for. Suggest that the staff needs more training if they cannot handle your husband and provide the services. I would tell them you feel it is unreasonable for them to request you hire a ft aide (what does that mean...24 hours or only during his waking hours? Because if it means 24/7 then you will need 2 aides - 1 day, 1 night who is awake all night) since you are paying the facility to provide the services.
Ask them to stop calling you unless it is an emergency or truly a situation they need you to help manage. They can document all the other issues in his chart and request copies of the daily chart every few days.
By all means, take someone along with you to take notes...conducting the meeting and note taking at the same time can be difficult and you want to make sure all their answers are documented. Once the meeting is finished and you've come to some agreement on what they will provide and what you will do, put the agreed upon services and who will provide them in a document, date it and send the DON, Admission Director and Facility director a copy for your husband's file.
BTW, an ALF with a memory unit accepted my DH 5 years ago, but because he was young, mobile and not too far along in his dementia, the staff couldn't handle him and in fact was afraid of him. I met with the director who admitted they weren't prepared or trained to handle a "healthy" dementia patient and told me he would provide additional training to the staff. I believe they took him because they thought they would be paid a lot of money over several years, not because they could provide the required care and supervision. They refused to take him back when he "eloped" one night.
As usual, LFL has given excellent advice, and I can't add to it. To answer your question, marche, I have had similar experiences. In my mind, I never settled it satisfactorily. The only thing I know is that my husband's doctor phoned me after DH died and thanked me for taking such good care of him while he was in the Care Facilities. "Without you going to bat for him, he would not have done so well. I wish all my patients had such an advocate."
I'm responding not with any solution but instead with a rant, or at least empathy. I have been confused within myself about posting over the last few weeks at least. Considering my * and that my husband's course was atypical sometimes I respond and then the next day read what I said and delete because it sounds to me like "ranting and raving".
I don't know how young your husband is, or what stage he is in. So, just basing on what I experienced I rant (still) in my head about the ALF experience. My husband was not yet 50 when I began my search for a facility for him. He was being discharged from rehab. He did not need memory care according to his neurologist. As LFL referenced, finding placement for someone of this age with FTD and behavioral issues was very difficult.
Other posts have recently made the point "money is not a concern" but for me it was. So, I found placement in what I would consider a middle of the road facility. A Brookdale was far nicer, far closer and preferable with acceptable rent, but the added care charges put it beyond my reach.
I didn't have a long list from which to choose but did the best I could. The pressure started almost right away. This sounds different from your situation, but for me it was to put my husband in their memory care unit. In any case, it was themed to residents at least 30 years older than my husband. Actually I found this where he was in residence as well- the tv, the music, the discussion topics, the activities: not at all what interested a 50 year old man.
It sounds like you are expected to do a lot. While I did not encounter the laundry and companionship issues, I was called constantly. As one example, he was not mobile; pulled out his catheter and they expected me to drive there, load him (!) in my smallish car and take him to an urgent care. The urgent care, as well as the facility was 45 minutes from my house and, I am not kidding, about four minutes from their location.
In any case, I did not have much wiggle room. The saving grace was Hospice. He was certified right away and it was like the pieces of a puzzle fell into place. The doc, the nurses, the social worker, took over. I don't know if this is a possibility for you....
Hospice had explained that he was certified as "failure to thrive" for an initial three months and other evaluations could happen if and when necessary. That saving grace was not just in terms of helpful people but in equipment and supplies.
Thank you, LFL and abby* for your excellent advice. DH is 63. I found out that this facility, which was highly thought of, was sold at the time DH entered and the new owners fired all of the administrators and staff who had made it a great place. When will these people learn that the best advertising comes from the families of the residents and doctors who are treating everyone (patients and family members)? I have started keeping notes - thank you for that suggestion.
You know how buzz words and phrases take on a life of their own? Well, the one I want to shoot down is "exit seeking behavior." How can they not accept that it is part of the disease and exactly why the patient is in a locked facility? It isn't like I can sit DH down and say, "Now, honey, everyone is coming unglued because you push on the doors. So, don't do that anymore. OK?" You are so right, that they only want to take care of old people who sit in a chair all day and don't require some vigilance. With three or four workers, at least, on the unit of around 24 residents, most of whom are not moving much, I would think that DH could be watched in a tag team fashion.
I am glad others know about the problem I posted about, but sad that this is a problem that even exits. I guess things don't get easier with placement; the problems are just replaced with a different set of problems. It is exhausting - no wonder so many caregivers die first.
marche, I must warn you, administrators and even the geriatric care manager I HIRED to make sure my husband gets the care he needs when in a hospital or other facility think I am TOO AGGRESSIVE and obnoxious. I tell you that because I fight hard for his care and our rights but it's not without a price. Given what we've been through in the last 5 years, I wouldn't change my behavior at all. I try to explain if everyone does the job they're supposed to and they communicate with me before there's a problem they would never have encountered the "Mama Bear".
Having said all that, I would also suggest you look up the facilities current rating on the government site which rates the nursing homes. It may be useful when you meet with them to understand the rating and deficiencies. It puts them on the defensive (but remember I am considered aggressive).
I would also take pictures of your husband, his room and the bathroom with your cell phone. I just stared doing this myself when my husband was falling while the private aide I pay for to supervise him at home was standing right there. It's good to not only have notes but pictures documenting what you're complaining about. I'll tell you, the aide we have had for 5 years is generally good but there was no excuse for him not preventing my husband from falling. When I snapped the images of my husband on the ground and his physical bruises the aide became very nervous. I want that documentation just in case I need it. A picture is worth a 1000 words...besides it can't be disputed by a he said she said argument. You will be well served taking pictures of an unclean bathroom and whatever else you fell needs attention.
I well know the phrases "exit seeking" and "elopement risk". I'm back to my original suggestions-ask them if they are truly a memory care facility, why the staff isn't trained to distract and redirect your husband. I hear it all the time that I am not employing well documented techniques in distracting and redirecting my husband and I should be employing those techniques rather than using anti-psychotic med which "could kill him". No one, not even the ALF or NH could distract and/or redirect my husband, so why do they think I can? BTW, the NH dr prescribed MORE meds to control him while he was there for 5 weeks. So much for redirection and distraction.
Sorry, I guess this turned into a rant, but hopefully I've given you a few more suggestions to help you manage your husband's care.
I placed my husband in late August. It has been a tough adjustment for myself as well as him but he had adjusted. He still knows me, is fully aware of what is happening to him, needs prompting and help with ADLs etc. Most of the conversations that he initiates are about the past and much of it I just go along with and have learned not to correct him. I visit twice a week and spend most of Saturaday afternoon with him. We usually go out to eat or do something together. I have started calling on the days I do not visit as he can still answer the phone but cannot call out. The conversations go something like this. He starts off with something like, "I have having a hard time and I need your help." He says he needs to be with me more. The issue is that when I go he does not remember that I went and is always saying "Where have you been? I need more time with you." He has visitors. My sons visit. I have a volunteer from Hospice visit, and I just recently signed up to get a member from the church to visit. I take him out once or twice a week or as often as I can. He does not participate in the activities too well but is showing some small steps in that direction. I tell him I am doing the best I can. He accepts that for the most part but constantly tells me he needs my help. It is tearing me up because on some level I know I cannot help him. I am at a loss as to what to say. Even after 5 months I something think I should have kept him home but then my brain kicks in and I know I could never do that. When I visit I know I made the right decision. I am hoping that things will settle down as I feel that after 5 months I am just beginning to figure out how to take care of myself but then am pulled back into the Alzheimer world when he says he needs my help and I am filled with guilt and a lack of knowledge of what on earth to do. The aids say he is doing well. Thanks for listening.
CO2, I found guilt and uncertainty to be the most difficult things to face, However, you know you have no other choice. Carosi 2* says to remember we didn't cause the disease. Forget the guilt. We deal with it as best we can. I know for sure I haven't said it as well as Carol has. Search her comments for the best of advice on handling guilt and uncertainty.
I can try to paraphrase my basic thoughts, Mary75* We can only do our best given the information available at the moment. Information gained later only applies once we learn of it. Guilt has no place in our Caregiving. Inherent in "guilt" is an intent to harm. We didn't give them Dementia or do anything to cause it. We do all in our power to take care of them, keep them safe, and as healthy as we can. If/when their needs exceed our ability to provide all the care they need, and we need to place them--there is no guilt attached to that either. It only makes sense to become the CEO and delegate the hands-on care to 3 shifts of trained personnel. As regards wedding vows. "In sickness and in health" does not say by myself 24/7/365. It says you promise to see the care needed is provided.
The takeaway from all of our comments is that even after placing a loved one in the best of facilities, a caregiver must always remain an advocate. Fortunately, my wife is in a lockdown dementia wing in a terrific ALF. She is happy there and I am happy with her care. But I still must continue to be observant of 'glitches' regarding her daily care ... glitches that are always quickly resolved when brought to the attention of administrators, but for some unexplained reasons continue to resurface from time to time. Aides are too often overworked and underpaid, or insufficently trained, or insufficently supervised. So, even if we place our loved ones in settings outside of our homes, we do not fully shed our roles as caregivers and advocates.
Mr. H referred us to the ALF, so after DH was there for three months, the ALF sent him a check for "referral." I didn't know about this, but no matter. Mr. H had a custody hearing and it turns out that the ALF had been subpoenaed so they sent a copy of the check to Mrs. H's attorney. On the check was my husband's name as the resident of the ALF. So my husband's name as a resident of an Alzheimer's unt has now been trotted through the courts and past all of the people involved.
We are private people and the folks who care know where he is. When I placed DH in this facility, I specifically asked them to be as sensitive to our privacy as possible. Now I am wondering if they violated HIPPA because they disclosed the diagnosis (as a resident) without written consent (when they attached his name as the resident in the "referral").
As things go, this is probably not a big deal, but it upsets me that no one thought to redact his name when sending a copy of the check. I would like to call them out on this. Any ideas on how to do this?
I would ask the ALF how they are legally obligated to comply with subpoenas. usually legal ramnifications nullify any privacy if court docs are solicited. but you should contact them and find out why they didn't bring it to your notice. don't know if they are legally obligated to send you notice or not. I know our banks send out stuff and it always says privacy rules etc etc, but if legals are involved then they can supply specific info requested. if you got a contract signed when he went in the ALF maybe that would be addressed as far as privacy rules.
marche, how did you find the ALF, was it through a placement site such as a place for mom or an independent care manager? I learned this the hard way...many if not all ALFs and/or NH pay a referral fee, For example, when DH was in a psychiatric hosp for med adjustment, the social worker told me she couldn't help me with finding an appropriate place for him so I searched on a place for mom and contacted a local geriatric care manager as well as doing my own research. What I found out was that any place that would accept him was paying a "finders fee" to whichever agency/person who referred them to the facility. One facility that I had contacted independently told the geriatric care manager I hired later on that they would NOT pay her a "commission" because I had made the contact independently before I hired her.
It sounds like Mr. H is getting a "finders fee" for referring your husband to the ALF and based on his arrangement with the ALF he is due $$$ for placing your husband with them. This is not a HIPPA issue..it has nothing to do with your husband's medical records. It has to do with your agreement to place him in a facility that Mr. H found for you/him. At some point you agreed either verbally or in writing that Mr. H would find a place for your husband and now he is owed the finders fee and part of the recordkeeping is identifying the client he placed and for whom is entitled to payment.
Edited to say that if Mr and Mrs H are going though a legal separation/divorce, then I believe it is perfectly legal that she/her attorney discover all sources of income, including the check for whom Mr H received compensation and who the client was. I still think this was not a violation of HIPPA laws.
LFL, It is a bit convoluted but yes, Mr. H got a "Finder's Fee" which I didn't even know the ALF would do. I probably would have placed him there anyway, although since last fall corporate has let go all of the outstanding staff they had, and other have quit. Right now the place is in flux with issues constantly developing that the new staff is inexperienced in handling.
I think this "finder's fee" needs more transparency here. Do geri-psych units get "finder's fees" from ALFs and nursing homes? I know for a fact that the ALF community relations rep brings lunches in for geri-psych staffs. Why would they do this unless they want the staff to just "mention" this ALF to inquiring families? It all seems fishy to me.
You are right about the discovery of income, but I see no point in mentioning the client/patient and think that the name should have been redacted.
HIPPA is so ridiculous if you think about all of the levels of people/departments/companies that those records pass through. I was amazed at the information that was "leaked" regarding my husband's diagnosis. Whenever I confronted someone and said "where did you hear that?" the answers were always evasive.
marche, I agree that the whole business of ALFs and NHs paying a "finders fee" or whatever you'd like to call it should absolutely be more transparent. I think it borders on dishonesty. As I said above, I found out only by accident when I was trying to place my husband after the geri-psych stay.
I'm not sure who all is involved with receiving a "finders fee"...it's kind of the industry's dirty little secret. You would hope that the hospital staffs, including the social workers wouldn't be allowed to receive any such payments, but who knows? But I agree, why would the ALF community relations staff bring in lunches?
The reason a place for mom is free for people looking to place a loved one is that the ALFs and NHs pay them to be on the list of recommended places. The first geriatric care manager I hired would only try to get my husband placed in certain ALFs saying they were the only ones she felt were good. I later found out that she had a financial arrangement with only those facilities, so they were the only ones she would recommend. She never disclosed to me that she would receive any compensation for placing him in a specific facility.
I agree, HIPPA is ridiculous. I have to jump through hoops to have copies of any of my husband's medical records, yet as you say, all the administrative people in the hospitals, facilities, etc. have access to the information. BTW, it's only going to get worse with the sharing of electronic medical records...more and more people will have access, yet we will still have to go through hoops to get the same info.
I agree with divvi, check the contract you signed admitting your husband to the ALF for their privacy rules, or just ask the director for a copy.
My husband was admitted into the hospice program. They come to the ALF and add tremendously to the services he is already receiving. Plus i now do not have to pay for all his medications, none of the incontinence supplies. They immediately brought in a hospital bed, a mat for the floor which indicates whrn he gets up to help prevent falls, and a few otjer things I am too depressed to think of right now.
The main problem right now is continued agression and smearing feces on the wall. H asked to be taken to the toliet but was so confused got up in the middle of a bowel movement and well you can imagine the rest.
The dr. Increases Seroquel and Ativan but they asked for approval to crush from me because he was not taking them. But his son said they put it in apple sauce and he doesn't eat it so increasing these meds is not effective if he is not ingesting them.
I moved to California where I didn't know a soul two years ago so he could be close to his son who promised to help with caregiving. That turned into a fiasco in September when DH was at my house for 3 weeks and even begging his son to come here and return him to the ALF did no good. I feel like he and my son both see me or rather don't see me as a human being but just the "thing" that has done all the work for all theseyears so that Alzhei er's has barely even touched their lives. Yes, i am resentful as hell.
I have made one really good friend here who is also a neighbor and i just learned she is moving out of the country. I am a very outgoing person and people assume I have a lot of friends but with ongoing Major Depressive Disorder and panic attacks that began after DH's 3 week visit in September I don't have it in me to make new friends. I desperately want to be back East with my old friends and my grandchildren I haven't seen in 2-1/2 years. dH may be in hospice but I think he will hang on for a long time even thugh he now frequrpently talks about wanting to die. I just know that I don't think I can last here another year. When i don't wake up crying I wake up shaking with anxiety. And I keep wanting to pick up the phone to call my mother who died a month ago. The two people in the world who knew me best and loved me most are gone. I lost my soul mate Bichon a year ago but still have her brother who is my reason for getting day to day right now. But still except for feeding him, walking him, and talking care of business for DH which requires my presence I spend all my time in bed. I have become truly pathetic and I just wish I could have handled all this with more grace. i did so well for so many years and still know I gave DH an wonderful Alzheimer's vacation for at least 5 years and then got him into a care facility he actually liked.
terry, I'm so sorry you are going through this major depression. Caring for and advocating for a spouse with Alzheimer's can be very overwhelming and life sucking. If you haven't done so already, perhaps you should consult with a dr. to see if there are some meds that can help you through this difficult time. And perhaps he/she could recommend someone you could talk to about how you feel? It doesn't work for all but in my darkest days I found a great person to talk to about my feelings and it did help a lot.
Thanks LFL, after all these years i feel like a guinea pig for treatment resistant depression. I am on an antidepressant and have been on more plus combinations (cocktails) since 2006 when DH's symptoms began to get me really low. dh was dx early 2007. I have an internist, a psychiatrist (PDOC), and am awaiting appointment with a new neurologist for ongoing pain and concentration/cognitive issues from head injury almost four years ago. I am between "talking therapists" and definitely it is easier knowing i have 45 minutes every week to talk without feeling guilty burdening my friends with yet another self-pitying phone call.
My son came to visit when DH went into Hospice and it was amazing to feel alive driving up the coast with him and through the redwoods and delicious fresh crab rolls and a few other good time interspersed with visits with DH. We have had our issues but this time he was great, no walking on egg shells, except during emotional talks about family. It makes such a difference being around people you care about who can actually make me feel some "desire" to do something for a change. This just reconfirmed for me that I will not survive here alone and must make it okay for me to leave. I'm not sure I even have enough energy in me to sell another house and move across country. Right now it's just the hope of leaving that is keeping me going so I'm going to hang onto that as long as I can.
I started new discussion "PLEASE HELP ME Need to talk with Someone who Understands" on the regular boards looking to get Jan K or others feeling as she did to email me. In reading her posts of June 16, 2010, and Aug 27, 2010, she was voicing my feelings almost exactly and i hadn't felt I had read those feelings expressed here before. of course, I have been gone for a couple years amd have much to catch up on. charlotte responded, for which I was grateful, but no one else. She said she thought it was because most people don't know how to search so I went back in and added instructions. i must be careful of being overly sensitive and remember too that I am in Pacific time so 3 hours later than a lot of people here.
Well this was a bad day but yesterday was very good as I worked outside for many hours. After talking to the hospice nurse this afternoon everything seemed to fall apart and I am back undwr the covers and wondering how I am going to make it intact.
My husband has been in a LTC facility for ten months after a hospital stay for passing out and falling over and over again. At first it was a great relief and he seemed to enjoy the activities and was having a good time. Since Christmas all things changed and he suddenly became agitated and hitting the caregivers. If I go and spend six or eight hours he is fine. If I leave after dinner, they are calling that he hit someone even before I get home. The doctor has prescribed atvan gel to calm him down after an incident. I am 75 and worn out. This has been going on for years, maybe 10,but really more like 15. He is in good health and pretty strong. If I were to take him home,would he hit me? He never ,ever, hit anyone in our 52 years. He was a caring,helpful person,always. I hate what this disease had done to him. I am so very worried and tired. I jump when the phone rings. Anyone?
Others will have constructive suggestions to make. But if it were me, I'd talk to his doctor about investigating possible reasons for the changes since Christmas. Maybe your husband has an infection, e.g. bladder. Or pain, e.g.tooth. If not, then I think that he might benefit from medication to control his agitation. I think the fact that you are worried, tired and jumpy would make it better for him to him stay in LTC, where there is staff 24 hours day. They are trained to handle agitated patients, for example, they can go in as a pair. No one will get hurt and normal care routines can be done with a minimum of fuss for him. If you are pleased with his care so far, you can probably count on that continuing. You, on your own, tired and concerned and trying to take care of him, would be less wise, I think.
I'm sure you're not causing the agitation. It's coming from inside of him. Whatever the disease process is in his brain is causing him to hit out at his caregivers. Time will take him to another stage and different symptoms, but for now, he needs help from his doctor to ease that transition. In the meantime, besides working with the doctor to get him this help, you need to take care of yourself. You are in for the long haul, and you need to survive. If it would help you, then back off from being there so much. Six to eight hours of being with my husband in the LTC facility would have been too much for me . I needed more of a break than that. I needed to exercise for my back. I needed to shop and cook good meals for myself. I needed to talk to friends and have some recreation. You notice how many times I've said "me" or "myself" or "I". Even so, it took me a long time to recover from caregiving. I'm glad he was a caring, helpful person. I think that he would want you to care and help yourself for the sake of his love he has shown you.
I agree with Mary that 8 hours visiting is too much. My husband was placed 6 months ago and at first I was visiting every day but I soon learned that it was way too much. I was told that it is actually better if you do not visit a lot at least in the beginning because otherwise they do not learn to depend on the staff. I now go 2 times per week. He wants me there more but I tell him I am doing the best I can. When you place them we are giving up the 24/7 care and that is hard I think because so much of our identity of who we are is tied up with caregiving. When we give up that role we must replace it with other things that serve to nurture us. It has been an ongoing journey for me.
maryd, I am surprised that they haven't sent your DH to a facility to adjust his medications. When my DH became abusive to the other residents after being in the Veterans Home 3 months they sent him to a psych facility to adjust his meds. He was there 2 months & I finally told the social worker at the psych facility that if he had to be medicated to the point of being pretty much “out of it” I was OK with that. I wanted him back at the Veterans home which was only 10 minutes away from my house as opposed to the psych facility which was an hour & a half away. He returned to the Veterans Home on a bunch of anti-psychotics & anti-depressants but he was calmer. He isn't on many meds now because he has declined so much in the past year. I go in about 5 times a week either at lunch time or dinner time to feed him (I wouldn't have to because the staff feeds him if I'm not there). I usually stay about an hour or two.
Once placed, has anyone ever decided to take their LO back home? My husband went from running the household and living a normal life to stage 4 AD when he had surgery for diverticulitis. I didn't know what was wrong with him and they assured me he would be "back" as soon as the medications left his system. Well, he never came back and is fully in stage 5. However, because they have reduced his anti psychotics and after a year on alzheimer drugs, he is very clear headed most of the time. He now knows where he's at and tells me all the time "get me out of this hell hole" or "this is a place you put people to die" or "you have to fight for me". He's starting to get depressed about this. His doctor told me to place him as soon as he was diagnosed, so from original hospital, to nursing home, to psychiatric unit to doctors office, where I first got AD diagnosis, he went to AL. He never came home after operation and he's so clear headed now, I wonder if he should be home. I am 70 years old and some have my own health issues like back and knee issues plus this last year has brought on several stress related illnesses to me. I think I can handle him in the state he's in now and I'm afraid I have placed him too soon. Please help me with your experienced advise. I hate him being so unhappy and he feels like hes fine and can do everything and anything at home "to help me". I am in distress over this.
I visit him evetyday and bring him home almost every day. We go out to dinner or lunch or see a movie or just hang out at home. He loves it. I love it so I am in a dilemma about bringing him home.
I have been where you are and with the same input from my husband, and I remember it as being difficult. However, in my opinion, you are both in a good place right now, in spite of his, "I am fine, can do everything and anything to help [you] at home." They really believe this, not knowing the amount of work and stress falling on the caregiver at home. I don't think you'd have same quality of relationship with him, "dinner or lunch or a movie," if he weren't in the care facility. You would be too busy and exhausted with the caregiving, laundry, shopping, cooking and cleaning. "I am 70 years old and some have my own health issues like back and knee issues plus this last year has brought on several stress related illnesses to me." I think you should use this time when he is fairly stable to take care of yourself. Would physio help your back or knee? An exercise program? Extra rest? You're like a soldier in combat, and you have to guard your own health. Unless he dies of something else, like a heart attack, his dementia will only get worse. It is a progressive diseases that ends in death. You have to be well enough to stay the whole course for him. The only thing I could say that had any hope of getting through to my husband was, "I just not up to it." Coco says to her husband (hope I'm not misquoting, check her last posting), "I'm doing the best I can." Handle his pleas as best you can. Enjoy this time with him now.
maryd, i am posting this without reading the other comments first, but wanted to respond. When you said you jump when the phone rings I totally identify. I feel like I have PTSD because several things like that overwhelm me with anxiety and fear because of all the things that have happened in the past. Since moving out here 2 years ago I only have my cell phone and I let almost all calls go to voice mail first. What i really are the text messages as I have grown to fear them because so much bad news came that way and I can see them as soon as I pick up my phone.
I can't imagine sitting with DH that long. I am not one to be trusted for advice as my life is a mess, but I can tell you that my DH hit me and he never would have done such a thing as himself.
I am getting nearly daily calls about DH's aggression and his dr has started him on Seroquel and has been increasing his dosage. Then i get calls he won't take them and they ask me for permission to crush. Then I hear he is not eating the apple sauce they pit it in. Sheezzz... You need to take care of yourself!!!! I know this because I haven't and I am paying the consequences. I think I have forgotten how. I am 62, feel 85.
Please please please take care of yourself first. Would he have wanted this for you if he was still himself?
Oh my gosh. I think i am in shock and can't stop crying. DH is in ALF memory ward and has been in hospice 2 or 3 weeks. The ALF just called and said due to his behavior issues he needs one on one care in addition to them. First the woman said she could give me the names of agencies and I could hire someone to come in for 7 hours a day as a companion and sit with him. I think in two separate shifts, 4 and 3. I told her i can't afford that as the LTC will not pay for additional outside help. She then said they could provide someone at an additional cost. In the memory ward where he is now it is a flat fee and i had to hire an independent case manager to get him into there because as I and his doctor believed they didn't want to lose the income. This person from the ALF said he could live for many years like this. I really believed he was at the end of his life
I called the hospice nurse and she confirmed that this was situation and that hospice is called for many reasons and he would be reevaluated after 3 months. She also said this could go on foryears or weeks, who knows?
I told her this was much my fault as i spent so many years catering to his every whim as i felt so bad for him. Not sure if I would do it any differently.
It's been almost 2 months since posting here. I said I was out of this late last year and time is developing that. I said I don't believe in time healing alone and it's this thread that has the bizarre documentation of my journey in the insane asylum and the voodoo psychiatry I used but can't prove or duplicate because human beings are so unique.
The key is always what we actually believe. Not what we're struggling with but what we believe about it in our core. I believed society was going to throw me in the dumpster the minute my job was done and that turned out to be correct. I had five people helping me take care of her from a geriatric specialist, through an assigned case worker, a regional respite center with a person assigned to us, and a trained support worker who came regularly. The second I placed my wife they all left on that same day and I've never seen or heard from any of them again.
I can make a strong case that caregiving is torture and contravenes the geneva convention. And what do people do when they come home on that day? We struggle through as best we can of course. We've become vets at that. Except that's so horribly wrong it's tragic.
The worst period of my life with my wife was going through her losing herself in all the hundred moments seared into my eyes and brain. The worst period of my life with me was when I came home that day after I placed her staggering through the shards of glass that used to be our lives, my life, our friends, our meaning - all this in a ridiculously clear multi red-flag state.
I had no sense of who I was in any remotely functional way the idea of which is laughable while the tragedies were lined up waiting for their turn to make me realize them.
Now readers have to park the superficiality that I'm talking about doing our duty or the thin layer of normality that is just as easy to gloss up as it is to burst in it's fragility. I'm talking about genuine feelings of the deep sort that every single breathing person experiences intensely in reality whatever charade covers them.
Unfortunately, I'm also talking about facing the truth that you need serious help and it comes in three forms: drugs, therapy, and self help. The first thing a reforming AAA member does is admit they have a problem. The first thing a person coming home from placing their spouse should do is put a sign on the fridge that you have have PTSD in very large letters. It won't do any good on the bathroom mirror because you likely won't really be looking in the mirror for some time.
I have no idea how to advise. My experience is that while it's so easy to chat or get by, the real truth is that most of the iceberg is submerged and the majority of people don't want to know that anymore than we want to think about where the steaks, chops, and roasts come from or that we pay others to kill our food so we can pretend it doesn't happen.
It's at that level. The level were reality actually resides. Far beyond most comfort zones where what comfort zone we've managed to cling to isn't the first thing we want to challenge.
But that's a trap for types like me. It's a trap because the worst thing IMO is to try our best to get through it. You should immediately diagnose the staggeringly apparent clinical conditions and put yourself to bed with gallons of chicken soup for the soul because you my poor, neglected friend are so desperately in need of some TLC that it would make Putin cry and he's cloned from a dead shark.
There are three ways to go I think: re-engage, bear up, attack the disease as what it is. Number one is not for me though I support it, number two takes too long and is random, number three worked for me. I'm not defined by a disease. The fact that it chewed me up and spit me out, utterly broke me and shredded my feelings and even my sanity for a time doesn't change what I believe.
That which doesn't kill me makes me stronger Nietzsche said. He was full of himself and hated women acting like people. It doesn't make you stronger. It makes you wiser which is what he meant to say and in this case that wisdom is that I have no defenses against life whatsoever and that the real thing to learn about what you believe is whether you want them.
I have a friend who is clearly uncomfortable with hugs or any discussion of sex other than in structured jokes. He will never go the road I went. I'm not only comfortable with seeing little Darth Vader's helmet poking out in the shower - I named it. Buyer beware.
My goal is neither acceptance nor normality. My goal is joy as me accompanied by the truths of all the things I have been, am now, and hope to be without a single tether needed. I have earned this freedom; but, whatever - it is mine.
ps - I will never put a star or any other identifier to separate out a group ever. There will never be a * beside my name.
Well it's done. DH is now in assisted living facility. He wound up in the hospital Monday and yesterday with a bad stomach bug. He was soooo disoriented and confused from all the medications. We were preparing to move him to the ASL within the week. Yesterday morning at the hospital God laid it on my heart that it would be the easiest for all of us to take him directly to the facility from the hospital... so with a lot of help from my daughter and son-in-law the furniture got moved in and we got his room set up before our daughter brought him in. I came home so exhausted, but last night I slept a full 8 hours without waking up! Checked on DH by phone this morning. His caregiver said he was dressed and had eaten bacon, eggs and toast for breakfast. This is the man who would only eat pb&j sandwiches here. So far so good. Thanks to all of you for your encouragement.
My DH would not eat at home only out at restaurants, since he is in LTC, he eats very well. Must be the way we hold our mouths. LOL
Take lots of time for rest and things you like to do. The adjustment doesn't happen over night it takes time. I'm still working on it after seven months.
And I'm still working on it after two and a quarter years - but it does get better and has overall throughout that time although at first there's so much hitting you that it's very hard to go through.
Every little thing I've done from enjoying an ice cream to noticing the sun to enjoying a show on TV to caring about how my bathroom looks (I'm a guy) has all been like stones laid that gradually builds.
Every negative thing like being able to enjoy that show and not react to the empty chair, feeling better because of sleep and some quiet time, getting more used to the memories that flood of what I've done, of the worst moments, of seeing her moaning standing in the bathtub face to the wall completely confused (you know the ones), of the vast emptiness in the house - all gradually lose their ability to torture in the knowledge of them.
Every moment you realize some little thing is better than it was like feeling how much you miss them when enjoying that show on TV, but it's a sigh now - not a breakdown into tears.
Because the hurts and the missing of things and the memories are so strong in all losing of loved ones - it's good if we can keep in mind that this is Alzheimer's which is another word for multi year torture of the mind and soul. That's on top of what everybody else goes through.
It was tough this morning. I never know when those moments will come or what will set them off. What I've learned is they don't last and when the anger or the crying pass I so often learn something. I want to learn something to help me. I've watched people who laugh but can't remember because they're also sad. You have to want to get healthier I believe and part of that is getting that it takes time and in my case years - so what? My wife is still here and needs me to watch over her so I'm not going anywhere.
This summer I go out. I hate bucket lists but I've made one because I need one to get me focused. If that doesn't work I'm going to come up with something else. It's time to give new people a chance to disappoint me and it's time for me to go out and have contact with real human beings.
I placed my dh last October. Hardest thing I have ever had to do. I expected to have a difficult time at first but it is going on six months and things are no better. This is the first time I have ever lived alone. Went from my parents house to being married. DH and I will have been married 60 years. 3/4 of my lifetime. I have good health so far but have the fear that he will outlive me and I won't be able to care for him to the end.
I feel like I am in limbo; not married, not single, just on the road between house and ALF. He adjusted well, never asked to come home. Forgot about home right away. Am I blessed? In a way, yes. Doesn't know my name, can't carry on a conversation, does recognize me as a familiar person.
I am extremely lonely, not depressed. I know I did what had to be done both for my DH and myself.
Shirley, I know what you are going through. I placed my husband 11 months ago and am in the same pattern as you; home to ALF and back. He is also at the stage where he knows that I'm 'someone' but does not remember anything about our 23 years together and does not carry on conversations or remember anything about his life. I have no desire to do anything and, like you, I feel as if I'm living in limbo. I am lonely too but only for him. I am torn between being involved with life (which pulls me away from him) and just focusing on him, which although isolating, contains warm and wonderful memories. This probably does not help much, but just letting you know that I understand and care.
To Fiona and Shirley, Honestly what you say is exactly the way I feel. I placed my husband almost 8 months ago. Still do not feel too much like going out--just sort of plotting along visiting him and trying to take care of the house and myself. He still knows me but my son went today and he did not recognize him. There has been a decline mentally in the 8 months since I placed him. I know in my heart I made the right decision but I am still feeling so isolated from the rest of the world. I so wish I knew how long this was going to take. I guess all we can do is focus on making a life for outselves. The loneliness is very real. I belong to a couple knitting groups and that helps. Knitting has helped me cope. I find I am knitting a lot lately. It helps to know I am not alone. God Bless.