Hi paj and jazzy, I too have considered bringing him home but like all of you when I look back and see how things were when he was here to bring him home would be a big mistake for me. He is much further along in his decline and it would mean more work for me even if I had someone coming in all the time. I have found that the longer he is in the better I am accepting it and altho I do still have guilt it is nothing like it was. Jazzy as for your loneliness yes it can be profound but once one makes friends with it it is not so bad. At least that has been my experience. I try to socialize at least once a day with someone who has a normal brain. It does not have to be a long or deep conversation just someone who has a normal brain. Also talking about something other than the disease is also helpful. I too try to take him out but I think those days are coming to an end as on thanksgiving at my sons house he fell after missing a step and fortunately nothing was broken. He could not focus on anything and just wandered around trying to find me. Today when I went he had absolutely no memory of the holiday, going to my son's house, etc. hugs to all
paj, I guess that was what I was getting at - Is it possible for you to help Bill to socialize with some of the other residents, if only for part of each visit? Since it was hard for him to socialize when he was fully competent, it must be that much harder for him now.
A far as your letting go, that's easier to do when things are going well. Although we can all make suggestions (and as you can see, I like to do that!), you are the one who knows your husband and who can make the decisions about what's best for him. I hope you will find something that works because neither of you deserves to be so unhappy.
CO2, I can envision your day at your son's house. Our last Thanksgiving with family was in 2012. Since that day until last Thursday, we have not spent even one holiday with other people. Our recent Thanksgiving dinner in LTC went very well and my husband enjoyed it, but he had forgotten the whole thing by the time I left later that afternoon.
paj, a few people have brought their spouses back home but when they were in the final stages of the disease and mostly bedridden with hospice care at home. After all the challenging behavior was gone.
My husband "eloped" from an ALF after 12 days (he was quite young, 58, and in a locked dementia unit with residents much further along). So after 4 months in 2 psychiatric hospitals, I decided to bring him home with in-home care. I wanted to break the inevitable cycle of psych hospital, facility, escape from facility or behavior problems, psych hospital....you get the picture. He was just too young, healthy and strong with agitation/aggression and honestly there was no facility capable of handling him.
It's coming up on 6 years at home and he still has challenging behaviors but overall has done well at home. I'm lucky, he has a LTC policy with helps defray a portion of the cost for in home care.
paj, until LFL wrote her comment, I forgot that there is a book by a woman who took her husband out of LTC and brought him home. It is called, "Slow Dancing with a Stranger," by Meryl Comer. Like LFL's husband, Meryl Comer's husband had behavior issues that were not addressed by the LTC facility. Maybe Ms. Comer's experience will help you decide what to do.
Although I have not read her book and question if I will since "We Are Not Ourselves" was such an emotional experience for me, the name Meryl Comer sounded familiar. I did a nyt.com search. She wrote a letter to the editor published on December 24, 2010. More recently a review of her book was published on September 01, 2014. The book sounds intense and there is a link to read a section of it.
I think all the time about bringing my husband home. I know I can't handle it, and I also know that he is, in many ways, getting better care at the memory care center than I could ever give him at home, even if I had full-time help. It doesn't help my heart, though, which is insisting daily that I must bring him home. I can't imagine ever letting go emotionally, I don't think that can happen until he's actually dead.
I started my husband on Hospice so he can get a higher level of care without me hiring one-on-one caregivers which was a disaster. There are residents who have been on Hospice for over 2 years, they just have to be evaluated every 6 months to continue. The thing I am having a very hard time with is that they are truly an end-of-life program. They have taken him off of cholesterol-lowering and osteoporosis drugs. Which makes sense, why should he continue them after all. But to me it sounds like I am truly giving up on his life. For so many, many years our lives have centered around his surgeries, his doctor appointments, his medications. How sad and strange it is to be
Ooops, I hit enter accidentally. I was saying how sad and strange it is to be NOT thinking in that direction. It's brought on a new level of grieving for me, and I was already over-the-top emotional! Hospice immediately got him a much nicer wheelchair with a high back, and a better bed than he had before, so there are already benefits for his comfort. I am glad of that, although I still feel as though this mourning will never end. The only time I feel alive is when I'm at the memory care center with him. My therapist said that's normal, and I shouldn't try to rush anything.
Thank you all for listening and understanding, especially since no one else gets it.
Again today I'm wondering if I did the right thing by placing him. I got the early morning phone call - he fell again last night. They found him propped upright at the foot of his bed. No broken bones this time, just a laceration across his nose. The nurse said he was very confused yesterday and yelling and shouting and crying at the same time after I left. Would he be doing that at home? Is it his inevitable decline, or is it because he's there? I wish God would send me a flaming arrow with a letter attached telling me whether I did the right thing, and telling me what I should do now. Once again I'm paralyzed. Where are those much touted "executive functions" we are all supposed to have until dementia sets in? Mine are apparently curled up in a fetal position howling somewhere. Joni
Oh my gosh Joni. How many times have I asked or begged for the same thing. Give me a signal! "Please let me know if I've made the right decision?" No answer through a lightening bolt yet. Guess I'm trying to transfer my responsibility to a higher power who'll give me all the answers I want to hear and relieve me of decision making.
And, the mourning. Had to stay home today for A/C heating folks to do semi-annual checkup on unit. Intended to do many things I've neglected but instead have reverted to my old habit...sitting in recliner, watching bad TV, eating the wrong foods and feeling sorry for myself and Bill.
As far as withholding certain meds, medical procedures, I've only dealt with that once. One of the docs wanted to do an arteriogram. Absolutely not! He's 87 years old and an arteriogram is not going to benefit him at all. Just increase risks.
Myrtle, honestly I've tried. Tried getting him into the dining room with other residents. He'll only go if I'm with him. Tried Bingo but since he's not as far advanced as other residents, he became frustrated with their inability to follow the game. He will not join the other residents in their "gathering" room. Will not allow other residents into his room. Won't read. Although I take him the daily newspaper, magazines that he used to enjoy. Thought of electronic games but afraid they'll only frustrate him. I've thought and thought and he seems determined to live this thing out alone or with me by his side.
The aides are really good about bringing simple games around to all residents. He'll participate as long as I'm there or if it's an aide that he particularly likes.
It's as though he's decided that if he can't come home, he'll just sit in his room and give up.
Myrtle, I do appreciate your feedback. You're honest and helpful.
Have made a note of the two books and will look them up through my Amazon account.
Again, thanks for all feedback.
And, yes, I know in my hearts of hearts that I can't bring him home. He's also 100% dependent on oxygen and that's another scary aspect for me.
We would all love clear messages from above about what is best to do. Is this problem temporary? Is this symptom progression or a side effect of the meds? Is he better or worse being moved to an ALF.
No simple answers but a few things to keep in mind.
1. It is likely that you moved your spouse to LTC facility because s/he is getting worse. Chances are they will continue to decline.
2. There is an adjustment period, they are likely to do worse after a move but then see some bounce back after they adjust to the change.
3. Some places are better than others. Sometimes a place might be good but not suitable. Or a place might suck. Or a place might be able to provide better care than you.
4. Sometimes we make it difficult or our spouse to adjust. If we want our spouse to learn to rely on the staff we have to back away and not be there. Or refuse to be a go between between them and the staff. Or not visit every day. This is the most difficult item. After 5 months in an ALF where I can visit only once a week (around a 1.5 hr drive and I work) my wife is suddenly reverting to habits from the previous ALF (i.e. trying to rely on me more). So there isn't any magic solution to ALF adjustment.
And I understand the bingo. My wife is frustrated today because she seems to be the only resident capable of doing jigsaw puzzles.
One thing to definitely do: meet with staff and discuss the problems your spouse has in adjustment and ask for an action plan. This plan should include your input since it should recommend how you can help him adjust.
I completely agree with paulc, especially about the clear messages from above about what is best to do and about meeting with the staff to make an action plan.
Yes, I know I need to pull away. It's just so hard.
Bill has bounced back and forth. He's gone from belligerence, anger, threats, accusations, paranoia, etc. to a sense of calmness, acceptance, dejection, hopelessness; whatever it is. Also, his periods of lucidity throw me off balance.
It's all new to me. Trying to understand the different phases of this disease. At any rate, I have confidence that I'll eventually work through it.
One day at a time.
And, yes, today has been spent thinking of getting with staff to see if we can form some action plan.
Hi Everyone, I am in the same boat at many of you, and also find it SO difficult and so exhausting. DH had Influenza A two months ago, and it has set him back a lot.
He is so anxious, cries, yells, is afraid to be alone (panic attack?) is afraid I won’t come, etc.. He had a brief appointment with the psychiatrist (was naturally quite well behaved). They know there is a problem, but I’ve been trying to find a way to make a SIMPLE chart of the high, low times and grade 0-10 his most anxious times, happy times (singing, etc.) bedtime, etc. I was hoping to colour-code this, and put a week’s results on one page. This was with the hope of giving the psychiatrist a clearer picture and allow him to compare with the medications. I want to get some relief for him.
Has anyone tried something like this? Is it a lot of work for nothing? Would appreciate your comments. Thanks,
Yes we tried keeping a chart of Kevan's problem with being awake "he said" three or four hours a night. He made a chart and I had called the ward nurse about this but the staff had checked on him during these times and he was sleeping not awake. In my case I think I tried to manage care from afar and tended to believe him even though I know he doesn't always give me correct info. He really believes he is awake but not so. I know this is different but Kevan also will not let other residents into his room and gets frustrated with bingo as he is not as advanced as others. He believes they are sick but he isn't. He is not taking part in as many activities as he once did. At least that U.S. what he tells me. Staff tell me he is the life of the place. Go go go!!
Paj I read you thread and you sound like me. Sit watch bad TV, eat wrong food and wish I could bring him home for good, but then I bring him home for the day and I know real fast why he is there. It's me that won't get up off my butt and try to move forward. It's me that is hanging on to that wonderful life that is gone for good. I wonder if it will be easier when he is gone. That is if he goes before me and sometimes I wonder who will go first.
We have to try to stop beating ourselves up over something we can't change. It is what it is. Our hearts are breaking, our worlds turned upside down emotionally and financially. Friends and some family disappear with no thought that we need love and companionship, we need care as well as our spouses. If you have that love and care, I wonder if it is any better? I guess each one of us is different.
Right now I am there most of the day, and am more familiar with his behaviour than the staff. I can record the ups and downs (confusion, weeping, happy periods when he sings or is more communicative with me and others, periods when he ‘wants to go home’, etc.) I thought if I could chart the times and the actions concisely, it might help the doctor in prescribing the proper meds to level him out. Just wondering if others had tried something like this.
I’m very sorry to hear about all the emotional pain you are going through with Kevan. There is so much pain in all the postings, but so much great advice and support given. Take care, Jazzy.
paj, It sound like you made quite a bit of progress in that one day. Keep up the good work.
Since I work during the week, I don't have too much time for bad TV (and none for good TV!) but I really get my share of bad food. This week, I decided to make it a point to eat a salad once a day, in addition to the bad food. So I'm sitting down with my salad now, and hoping there will be something of interest on HGTV.
Myrtle, since placing him in assisted living I am eating a salad every day for lunch and feel better. When he was home I grabbed food and hardly ever sat down to eat. I believe it is a small beginning.
I just found this site and I need it badly. My DH was diagnosed with ALZ just 5 years ago. He did fine, but this past year really went down a lot. He became unable to walk and was in a wheelchair at home, but I was having difficulty caring for him 24/7. He is 88 and I'm almost 82. One day he slid out of his recliner and I was unable to help him, so called the ambulance and took to ER. The dr. found no health problems and told me to take him home! I LOST it! Began screaming, crying and carrying on. Ended up finding a NH to take him, as they were deeply concerned about ME! This was the 1st of July. He spent 1 week there and then transferred to a NH in our state. We live on the MN/IA state line. After 2 months there he was moved to a NH in the small town near me (4 miles). He has gone down since being there and is angry with me, avoiding talking and looking at me often. Has lost interest in whatever I tell him. He does fine with the staff. I have no problem in staying out on our farm alone, but miss conversations with him the most. We used to talk together ALL the time and about any and everything. I am soooooo lonesome for him. I could write the same stories most of you have written. This is worse than cancer!
Yes Ruthel, it is worse than cancer. I totally agree. I was very lonely too in the beginning but have learned to keep busy and make friends with the loneliness. It is not so bad but in the beginning it is hard to get used to it. My suggestion it to allow your husband to have his angry feelings. You cannot control him. You can only control yourself. You may be feeling a lot of guilt but that too will get better. You have lots of understanding friends here.
Such a horrific few months since I placed my husband. I read here everyday, but can't begin to express in writing all I feel as do much has happened.
As I've said before, my DH has behavioral issues that could no longer be handled at home. He was in ALF for two months. He continued to be very agitated and at times combative . He can no longer express himself verbally and is very frustrated. He has been in a Geri psych for give weeks now. He is receiving excellent care including 24 hr one on One sides who are caring and attentive. However, he continues to decline. Still so agitated especially in the evenings. He wants to run , pushing anyone or anything out of his way. He has fallen a few times, even as he is held by caregiver.
I had a spot in a good ALF near home, but no way can he be discharged. Dr. Trying dispersal and stopping seroquel now. Nothing seems to work. Today, he wouldn't eat.
He is declining at a rapid rate. I see he has all the behaviors of stage six. In two and a half years since diagnosed in stage 4 moderate he has come to this. How can this be? Anyone else experiencing this?
I understand your pain. My DH has not had such a difficult time as you have been challenged with, but we have not had an easy road either. I have worked so hard to figure out HOW to help him, and began documenting daily, everything I can, so I could present a daily report (presented to the doctor/psych), giving a true picture (as I see it) of my DHs state of mind, etc. (I am fortunate to be able to visit daily, so I document – very briefly: what the PSW reported about the morning; my opinion on arrival; how the day went (i.e. moods, problems, etc.), afternoons, evenings until I left, etc.) It has been a lot of work, but I’m so hopeful it will, in the end, help him.
After memos to his NH doctor, to the very supportive Social Worker, etc., I requested a consultation with the psychiatrist. I prepared a ¾ page summary, giving very concisely, his background, his medical history, the problems we have now, etc., and the desperation I feel to get him some relief for his emotional pain.
We were fortunate, in that we got the appointment with the psych., some of his meds have been changed, and so far he has benefited from the changes. We have a long way to go, but it is a start. I believe my DH is in Stage 7, or very close to it … he does not remember that we have been together for 50 years, most of the time does not know I am his wife, but knows I am familiar. I am also fortunate in that I am only 10-15 minutes away by car, and spend a lot of time with him, so I can document most of what is happening.
I don’t know if this is helpful, Lorrie, but I hope things can improve for you and your husband. Just trying to help. Sincere best wishes
Thanks. Marg78 It does help to hear from you. I, too, try to keep tack of his daily behavior. However, I live about an hour and a half away. I go most days but have found the trip exhausting and take a day off about twice a week.
Everything is still so unsettled. No idea where he will go next or when he will be manageable and able to be discharged!
Hi Lorrie, we were on the same journey 6 years ago and I truly understand your frustration, pain and sense of hopelessness about your husband's situation. I know it is so difficult and exhausting to try to find something that works to calm him so he can get out of the hospital. My husband seemed to go from stage 4 thru mid stage 5 in 8 weeks. And as you know, it took 3 months in a geri-psych unit (with a one on one) until they got the right med combo. He's been home for 6 years now with a live-in aide; no ALF would take him back then because he was too strong and aggressive.
Perhaps a meeting with the doctors and other caregivers to discuss how they view your husband's progress and possible release date might be helpful for you. I know I found the status meetings helpful.
Joan has my email address if you want to contact me. I understand your journey only too well having lived it.
Hi LFL, I am seriously considering bringin my DH home from the NH.Would you mind if I contacted you aftr the first of the year for some advice?Have several questions need answering.Our children are not for th move ,but I am worn out going back and forth a couple times a day to NH.
yhounley, have you discussed your situation here before with the NH? That might be useful. My first reaction, which might not be appropriate, is that if you are going to the NH twice a day something is wrong with the NH. They should be caring for him and he should be bonding to the staff. If you don't trust the staff to care for him, I think it is the wrong NH. Or there might be other issues.
Moving him home is always an option. But there is a reason you moved him to a NH and it is important that those issues are solved.
I found when my wife was in her first ALF over time I was having to visit her more and more (this is with a full time job and a child at home). No longer the case at her current ALF. I trust the staff a lot more and I see how I made the first ALF stay less than a success (though I still think the ALF fell short of its promises).
yhouniey, of course you can contact me whenever you like, just have Joan send me your email and I will respond.
Options for my husband 6 years ago were very limited - only 1 ALF would take him and he escaped one night about 11:00 pm. That led to the 3 month psych hospital stay. I don't regret brining him home to stay those 6 years ago, but even with a full-time paid caregiver there have been challenges. Of course I doubt that they are any worse than it would be if he was in a facility. The ALF used to call me at night to drive the 40 mins to give his meds at night and the NH he was in last year for rehab called me several times at night to help calm him down. My experience has not been great with facilities. With him at home, I don't have to drive anywhere to give meds or calm him.
Thank you for your post paulc because I was about ready to chew holes in the computer screen. It is unbelievable to me that for what it costs for ALF or NH that a spouse is required to be there or assist on any regular basis. When my Mom became violent with home care helpers we found a NH in her area and that is where she spent the last 8 months of her life. My siblings and I were all located many 100's of miles away. We each visited every few months when we could get there. The NH handled all of her care and medical issues. When she became more violent, they just drugged her out on Seroquel and some other drugs.
When the time comes that my husband is too dangerous or has care needs greater than I can provide, I sure do not intend to spend that kind of money per month and live my life in the NH also. Note to self - be darn sure they understand my expectations and agree right up front.
I never go to the LTC to help care for my DH. If I wish to take him out, visit, play games or what every do. Family are not allowed in the residents dining room. I was told that is because they do not want to make anyone feel uncomfortable as this is their home. They have feeding tables for the mobile and take trays and feed the residents that are not able to make it there. If I wish to share a meal with DH we go to the Welcome room near by and they bring our choice of meal to us. I am in and out as often or as little as I want. If there is something I need to know about his care and behaviour, I get a call from the ward nurse or the Doctor. There are a few caregivers that stay all day but they do not take part in the care. They call the nurse or PSW and the need is cared for. They are very concerned about my health as they are afraid he will put me in my grave with all the things he try's to pull in me. As I said in a different thread, he told me late last week to go and make my own life and he will make his own life there. Today he decided that he never said that on Friday or I missunderstood him. He was pretty firm on what he wanted. No way for me to understand. He usually calls three or four times a day, but not this last week end. Only one call to say goodnight. He is well cared for and I have no worries but I do keep a close watch for abuse or drug changes without my knowledge.
I do get ticked at some of the PSW's as they can get testy with the residents. No need for that. They can get another job if they can't handle it.
Have I thought about bringing home? Yes I have but after him being here for one day I sure realize why he went there and back he goes. He is happy to go "home"
Myrtle, maybe I haven't made that much progress after all.
Again, I'm considering bringing Bill home.
He is so much calmer and aware but looks so sad and lost. No more anger, threats, hallucinations. I know.....it can all return in an instant. Maybe some med changes have helped. He's probably in the mid-stage of the disease.
Friends and family (except for my daughter and she's unsure) are totally against my bringing him home. My daughter knows how I've struggled with this for five months. She says, "You are not going to be satisfied that you've done all you can do until you bring him home and try. Make a list of the pros and cons. Over the days, look at your list, add or take away but above all, be honest with yourself about why you can't let this idea go."
I won't try it without hiring in-home care.
If it doesn't work out, I can always go through the worry and horror of placing him again.
Paj, I honestly have thought about bringing him home but that was in the first 6 months or so. Of course I am not faced with anger, hallucinations or psych wards and I know my situation could all change. He is very compliant so I know for now I am blessed. Like jazzy I feel he is well taken care of. There are a couple good aids that I check with and they will fill me in. The nurse calls me on everything and I know if I brought him home it would be the biggest mistake I could make. As I look back and see how far I have come I would certainly hate to peddle backwards again. A hospice social worker sees him every 3 months and calls me with her assessment. If I have any concerns or notice any change in the norm I can call the hospice nurse practitioner who will come out and see him. Here in ohio we have the hospice navigator program which provides a weekly visit from a volunteer and the above stated services. Like jazzy I never go there to help care for,him. That is why I placed him to free me from the 24/7 care taking. I visit 2x a week which is about what I can manage. You may want to ask yourself what you will be accomplishing by bringing him back home and more importantly how will this affect your health.
Hi paj, I'm so sorry that this has been such a rough time for you and Bill. I agree with most of what your daughter has to say. The only advice I question is that you should bring Bill home because until you’ve done that, you are not going to be satisfied that you've done all you can do. That does not seem like a good reason for disrupting him.
Here is what I suggest, based on the “Myrtle Model of Decision-Making.” 1. Before addressing pros and cons, get more information. Find out exactly how many people you would have to hire, exactly how much you would have to pay them per month, exactly what jobs you would have to perform yourself and for how many hours, how Bill would get doctor's care, and also what resources you could draw on if Bill had serious behavioral or medical issues. Also, is there a way to find out if he would be happier at home -- Do you dare bring him home for a "test visit"? 2. Now that you have this information, write down the pros and cons, being very specific. 3. When looking at the pros and cons, try to disregard any non-essential data that is flying around in your head, such as feelings of guilt, shame, or fear. Those feelings interfere with rational thought processes. 4. Talk to a few people whose judgment you trust AND who have some knowledge of or experience about the subject. Your daughter would be one of them. Also, consider hiring a geriatric care manager. (Both LFL and I have used them.) Such a person might be able to help you cut through a lot of non-essential stuff. 5. Imagine what the best-case scenario would be if you moved Bill back home and consider whether that would be worth the move. Then consider the worst-case scenario and figure out how you would deal with it. I have no idea what the best decision would be for you and Bill but I have faith that you can make that decision if you are able to think clearly about the problem. Our intellect is one of the most important things we can offer to our spouses, who have lost so much of theirs.
Great advice, myrtle. I do think speaking with a impartial person such as a geriatric care manager would be helpful for those considering bringing their spouses back home. Having a spouse with dementia and behaviors is very challenging.
Really, I have consider most of the points you mentioned; however, I'm not aware of a geriatric care manager in this area. That's something I'll check out. Maybe they're called by some other name here...Area Agency on Aging?
I also need to check into getting an appointment for him with one of docs that saw him in the psych ward at the beginning. The NH does not have a psych. on staff.
May have mentioned this before, but we live in a small rural area (closest large city is 75,000) and this area, as far as I've been able to determine doesn't offer a lot of options.
I rely a lot on my "36 Hour Day" book re. ALZ.
I know I need to pull away. He often mentions how well he likes the staff and how nice they treat him so that's comforting to hear.
He's not too fond of the more intrusive residents.
I realize that at any moment he may return to the same combative, angry person he was three months ago. That's one of my biggest concerns plus his oxygen dependency is very scary to me.
At the pace the VA works, I don't expect any quick answers from them so probably have plenty of time to work through this...again!
I'm so frustrated with myself because one day I have no doubt that I'll bring him home. The next day, it's "no I won't". It's driving me nuts!
He seems so lost, depressed (he's on anti-depressants). It's as if he's given up on life or any hope.
paj, The professional association for geriatric care managers is the National Association of Geriatric Care Managers. www.caremanager.org. I think you can put your location in and find out if there is someone near you.
Based on the comments on this site, it's clear that people who live in sparsely populated areas have challenges that folks in more densely populated areas do not have. It's easy for those of us who live closer to urban centers to give advice, but it's kind of useless unless you have access to the services we are talking about. Hang in there!
Welcome to this site. I'm sure you'll be hearing from Joan, who is the founder of the site. The others who post here so helpful and considerate, too. They know what we are going through.
I can certainly understand why you are lonely, with your husband angry about his situation and you being out on the farm thinking about him. My husband and I used to talk about anything and everything, too. Now when he talks, he usually does not make much sense. He is also in long term care but at least he is not angry. I think that CO2 gave wise advice when she said to let your husband have his angry feelings. But I sure hope he gives up on them sometime soon.
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
I highly recommend reading the blogs I have written since placing my husband in August, 2013. You can find them by clicking the "previous blog" section on the home page - www.thealzheimerspouse.com, and then clicking 2013 - August- December, and then 2014. This has been the most difficult life event I have ever faced, and that includes the death of my mother from lung cancer when I was 22 years old. There are days when I don't think I will ever get through this, but with the help of a good counselor and my wonderful website members, I am still trudging on. Please know that you are not alone in your feelings and difficulties.
Here are a few links to some of the blogs I referenced:
Thank you Joan and others for welcoming me to this site. I worry now that we are coming to the end of his life. Since last Friday, he has not eaten much whatsoever. The dr. prescribed Remuren (?) along with the Megastrole, which he as taken for over 3 years, but it is not helping. And he seems to be sleeping more. They say he still seems healthy and no pain or fever. Don't know why he has quit eating, as he has been doing well up to now. He has lost weight, down to 121#. Normally he weighed 165 or 70, but went down to 140 for a long time and was 130 when he went to the NH.
I have complete faith in God and have been doing a lot of "crying out to the Lord", along with praying for strength in the time ahead. I haven't contacted my sons about his condition (they both drive truck) and I can't talk without crying and don't want them upset out on the highways. Our 3rd son is crippled and lives in WI and can't drive, so don't want him upset either, until I have answers. Dec. is when DH and I both lost our Dads, not the season I want to go through again!
Have gone through loss of all parents and many friends, but a DH's probable loss is like being cut in half!
Hi ruthel, It sounds like right now, you are not just feeling lonely in general, but you really need someone to talk to about your specific concerns with. I understand that you don't want to upset your sons while they are on the road. But they need to know about their father and also need to know that there is something they can to do help you -- they can listen. Would it be possible to email your sons and tell them that there is no emergency but you just need someone to talk to and share your worries with? You could include some of the details that you wrote here - the weight loss, etc. That way, when you talk to them on the phone later, you wouldn't have to explain all that.
I know this must be so hard. I'll be thinking about you and your husband.
Thank you Myrtle. Today I was very blue and teary-eyed. Five days of fog and gray didn't help! But in the afternoon #3 son came in. When I started to tell him about his Dad not eating I completely fell apart crying and sobbing. I think it scared him! But later I calmed down and he went up to visit him. It was close to supper time and he said he was going to tell his Dad to eat. Maybe it will work! I hope so. He'll be home to go to their Christmas Party on Sunday, too. Maybe that will be a good day for all of us! #2 son is out in Calif. again, but his brother will be talking to him today, I'm sure. I don't use the phone unless an emergency. I have a serious telephone phobia and get very nervous using it! Crazy, isn't it?
I'm so glad you were able to talk to your son about this. It's probably a good thing that you broke down because it made him realize how much your husband's decline is upsetting you. I am just repeating what so many have said on this site but this is probably the hardest thing we will ever do. I hope you have a nice day on Sunday and that the sun comes out to lift your spirits a little.
Well, the signs for which I've asked have been received (bring him home or leave him at NH).
Never contacted the care manager because the next day or so, Bill moved into the delusional/paranoid stages again. He's telling about events that he absolutely believes are true but have no basis in fact. It's so sad to look deep into his eyes and try to understand where he is. I sit, nod and make appropriate comments because as we all know, nothing but frustration/anger come from trying to correct their thinking.
Maybe I finally understand. It will only get worse as the months and years go by.
Guess I had my own delusions.
Ruthel, to some degree, we're the same. It's hard for me to unburden to my children and friends because everyone seems to have so many problems of their own. That's the wonderful thing about this site. If we can't bring ourselves to talk to others, at least we can express our feelings to other people on this site who know exactly what we're going through.
As far as eating, some days Bill's appetite is good. Other days, I can barely coax him to eat more than a few bites. He's gone from 170 (before NH) to 154. Lack of activity is probably a factor. Since he's oxygen dependent, much activity is nearly impossible.
Thanks to everyone for feedback, comments and support.
Paj, you hang in there. I know it is not easy and know you are not alone as you make these difficult decisions. I spent Friday morning in the ER after he fell. Had a bad bruise on his forehead. Of course no one saw him fall and he cannot remember. I am having the hospice nurse practitioner come out this week and check him out as I could not get him into the primary care. The last time she saw him was a few weeks ago she told me he is a very sick man. I wonder exactly what are the criteria for getting accepted into hospice. He is still walking but is now a huge fall risk due to his very poor eyesight. She told me that a cane or walker will not work with him because he will not remember how to use it. I just feel like he is a walking time bomb for something really bad to happen. My neighbors husband was accepted into hospice and he is still walking and goes to daycare. But he is much older. I have him enrolled in the hospice Navigator Program. I am not sure everyone offers it but it gets you in the system and the only criteria is they have a terminal illness. They offer haircuts, a volunteer who visits weekly and a social worker and nurse practitioner if you want them to come and see them. They bill Medicare for the practitioner visits. Everything else is free. God bless.
When my DH was home and I had to help him or clean him up, he always said he was sorry he made this work for me and thanked me for being so good to him. But recently, in the NH, he has always looked so angry at me and turns his head away and won't look or barely talk to me. If I just try to pull his shirt straight, or help to put on his shoes or anything like that he hollers and cusses at me and I have to call an aide to do whatever. And he smiles and talks to them. He was still ok with me until just the past couple of months when we moved him to this NH in our local town. I was so pleased he would be close by, instead of a longer trip all the time. Now I wished we hadn't moved him! Did the move disturbed him that much or is it just another step down in his dementia. He doesn't seem to realize he is in the NH in our town, so I don't think that is the problem. I almost hate to go see him, when he looks at me almost with hate in his eyes. He used to always be happy and I just don't know how to cope with him now. When our sons come on Christmas Day to visit, I'm sure he will talk with them, but I will be ignored. I can't stop crying as it hurts me so much. I could handle it if he was like this to others, but it is only me!