I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I would like to know if anyone feels as confused as I described in the blog?
I hear your pain and can understand alot of what you wrote about. I had the pamplet from the Az Society on caregiver burnout and out of 10 symptoms I had 10. I think when you are where you are you need to get ready for placement because I worry that if you don't this disease will claim you as one of its victims. It sure sucks.
Sometimes I think I have it hard, then I read what you face every day and yes.I can feel your pain and understand your feelings.They say,it's better to place your LO too soon than to late. I am trying to come to terms with placement. I always thought that I would place DH when it would be to his bebefit, but sometimes I think it will have to be for my benefit and my sanity.Ahard choice.
You'll need to refresh your browser. If that doesn't work, shut off the computer and turn it on again. I posted the blog at 2 PM ET, so if your computer was on before that, it will need refreshing.
Joan- I may have mentioned this once before. When I asked DH's doctor how I would know when it was time to place my Dh. He was so wise, he said basically that the disease has my hubby and nothing is going to change that, and If I were not in the picture he would be placed, and that fact alone means that it could be now, so the answer about when to place is about the caregiver not the "victim" it is when you and I decide we just can not do it anymore. That is the time to place. Hugs to you.
Wise words Sherizee. I am certainly not as deep in the trenches as you Joan, but of course placement comes up. I have people telling me the time in now! And like YOU, I see, that he has his comfort here, he is still HERE< his cats, his tv, he does not want to leave.
Now I can say, who knows later, that violence, or, when and if he totally does not know me, would be the time. At the rate things are moving, and after reading about others here, it could be sooner rather than later.
Well, as i have already posted that i placed Dh last week...I too thought it would be when he was bedridden and not know who i was...it was the most gut wrenching heartbreaking thing i ever had to do. When I got home from placement, a sense of calm and peace came over me, then the next day reality set in...that's it, no turning back now, he's not coming home. The homes chaplain rang yesterday to tell me DH is settling in well, he gets on with everyone, tries to help everyone, they love hearing his stories that he tells...so after a week I'm sad and teary, but if he's settling and happy there...i may in time settle too. I just ran out of care giving, I felt i was not giving as much as i should have been...and he deserved more care. I don't know how much longer i could have gone on...having a bed come up at a time when it did was the defining moment for me...So, I too am now thinking when the care giver is ready...sooner rather than later.
Joan, boy do I hear you and know where you are coming from. Your comments and concerns and confusion is what I go through daily when I sit out on my patio and he is doing his sleeping (avg. 18 hrs a day)...I say to myself..."Why does he need to be with me in our home when he spends 18 hours a day sleeping?" Then I answer by saying to myself..."Self, what are you complaining about as long as he is sleeping you don't have to be doing something for him." Then I continue my conversation with myself and say..."True I don't have to be doing something for him, but what kind of life is this for me...when is my turn...how much longer...I want to be free."
Joan you also have a lot more strength then I do. I cannot imagine any type of visit with friends that I would want to do enough to go through what you have to do. I just couldn't do it. And, my dh cannot carry on a conversation so for us...what would be the point? It would be too much work and effort for me and what I would get in return wouldn't be worth it. Then...I am back to the isolation I must suffer. Kudos to you. You are one strong woman. The time is coming...when I have the strenght I will make the decision....I just hope it isn't too late for me. And, I hope the rest of the spouses don't wait too long either. We just need the strength to do it.
I truly wish we could turn the focus on Placement around. Instead of seeing it as a negative, we really need to look at it as a positive. When our LOs are not safe in our care--no matter how hard we try; when their decline has reached the point where our health--physically, mentally, and/or spiritually-- is over-taxed or even in jeopardy, enlisting 3 shifts of caregivers to take over the day-to-day hands-on care is the right thing to do. We are still their Caregiver/spouse. We serve them better as their advocate and can return to more of our spousal role.
Unless you can afford private pay, it's not easy to find placement. There are waiting lists. Even if your LO's Dr. says your LO is a danger to himself...or he becomes a danger to you, there's no guarantee you'll be able to place when you finally decide. You may still be waiting long after your decision is made.
Having in-home help can help delay Placement but generally it only covers a small part of the whole day/week. When my DH was Dxd in 2006, we started with 6 hours of in-home help per week, soon upped to 8. In late 2011 it was upped finally to 16 hours per week. This was about 2 months before he went to the hospital and from there into Placement. Keep in mind, there are 168 hours in a week. DH was reverting to a 3rd shift schedule, well into Stage 6; an elopement risk; and a heavy smoker. I was operating on 4 hours sleep a night; constantly trying to stay ahead of his efforts to get cigarettes---sell things for a pittance, elope, beg from neighbors, etc. It was 9 months after placing him on waiting lists, an Altercation endangering me, and a medical crisis, before he was placed. We were blessed with an excellent NH. He was finally exactly where he needed to be and where I needed him to be. He knew where he was, he knew me, but he settled in,and made friends with staff. At first he wasn't happy about being there, but did come to understand it was necessary.
I do agree with Carosi, but I also see the in-home help you could be offered after the upcoming assessment as just the right compromise for you, given how you feel. It was issues of cognizance of his surroundings that changed my thoughts about placement. When he lost that cognizance, that's when I saw it as ok for me.
I think we're all confused with conflicting emotions regarding placement of a spouse in an ALF or NH, but I feel that the bottom line is the same of all of us. It is never too early and never too late for placement; the time to make that decision is a highly personal one that each of us must make for ourselves given our unique situations and personal feelings. When each of us decides that placement is best, both for our spouse and for us, that is the right time.
Well, it took me many years to finally join your blog with a need to respond. Seems I'm just about 6 months ahead of all your posts in our travels through this horrible disease. My guy is 13 years my senior, and was diagnosed in 2006, but certainly struggled with it earlier, as everyone seems to. He does not have diabetes, but does have Parkinson's, which is also physically limiting. At this point, he can walk and go to the toilet on his own, although, it isn't pretty. His ability to speak has come to a whisper, and then, only when absolutely necessary to communicate. He needs help to stand, and I have all but given up taking him anywhere, as it is such a trial, wheelchair and all. Needless to say, I feel as though I am on house arrest. I could explain further, but you have all but explained my plight. This morning I read your blog, and researched past ones, and just became emotionally whooped. I am in the situation so many are in, as we make enough income to not qualify for medicaid or assistance. Our retirement income keeps us just out of reach of any help, but have savings to last maybe 6 or 7 months. To hear everyone speak of placement or no placement is so disturbing. How is that even an option to so many of us? Our life savings up for grabs, and then the need to mortgage our homes, only to rent somewhere, and not have a penny to leave our children either. How can that be an option? Seems the only thing I can do is to see who goes first, him or me. My health is questionable at this point, and I know my children would not want me to go through what we do, but I have no choice. Just can't afford it, like so many others. Just try and last as long as it takes. I am aging faster than him now, and falling apart with loneliness and grief, as we have been married for 36 years. He is all but fog-walking, and placement would not be a problem to him. I am, however, trapped in the financial picture of total poverty or caring for him until I am unable to function, or die first. I am sharing this for all of those sharing my situation, as I am not hearing from any of you. God be with you and give you the strength you need.
Welcome to my website. If you have been reading for years, you already know about the support and information we provide, which I hope has been helpful to you.
Compounding the mental disability with physical disabilities makes it twice as hard. Right now, I am so exhausted from the physical demands, that my sorrow at the mental declines has been pushed to the back burner.
As for the financial, depending upon the State in which you live, the "our" retirement income of which you speak, may be able to exclude yours and only include "his", which may increase your eligibilty odds. Check with an Elder Law Attorney on that one.
With all of my stressing over "to place or not to place", I just found out that even with Medicaid Diversion assistance, I cannot afford an Assisted Living for Sid, because the diversion program only pays for some of the AL. Our only placement option is a nursing home, which the program pays in full. With the help I will be getting in home and the increase in Day Care that was just approved, I should be able to postpone placement for quite awhile.
How thoughtful of you to respond so quickly. Yes, I neglected to let you know that I so appreciate your blog, and all of the help and support it has given me for so long. I am sorry for that. I truly pray that you will find a way to care for Sid, and keep yourself in a place to enjoy life, and also be there for him. I will continue to check out sources, as I have, and learned that my income may not be included, but so far have met with no success. I guess this was the source of my distress and need to speak up for so many in my shoes. My best to you and the trials you both face. I know that it is such a struggle with your inner self to make decisions that will be the best for both of you. (BOTH of you). Again, thank you so.
I too go from feeling just OK to overwhelming feeling of Sadness to almost tears. Sometimes there doesn't seem to be anything particular that makes my mood change. Seems it has a mind of it's own. I care for my wife at home as well, she is suffering from vascular dementia at the age of 58, and her moods change at the drop of a hat. Happy one minute and crying the next. Psychiatrist has put us both on meds, me I guess to deal with my depressing and stress of trying to work from home and care for her to help even out her mood swings.
janny, you are facing the same challenges as many of us here are. In our state our retirement income (joint) and assets (his, mine, ours, my inheritance) disqualify him for any Medicaid assistance unless we spend down alot of our assests or put some of them in very limiting trusts (I have a physical disability) so every option available to him means we wll have to pay a lot of money out of our own pockets. I have seen an Elder Law Attorney (2 in fact) and they both had the same advice. I'll be left with the house and @ $100K in savings. Unfortunately the $100k won't be enough to maintain the house and meet my VERY modest needs. Catch 22.
By all means, see an Elder Law Attorney so he/she can help you understand your options.
emily, That is how I feel...as long as my DH is saying things like " look at what a nice house WE have." or " can you believe we paid our house off early?"..as long as he is aware of this, even if he can't recall other things, he stays home with me. I don't know how costly it might be for in home help here vs NH yet..There are various facilities here, some are home settings with just a few patients, some are larger... We see the neuro next week...I wonder what he is going to say?
Last night, at a motel, as we were leaving to go to dinner, I saw a man looking confused, standing on the edge of the lot at a very busy street. My daughter saw him too. His eyes were blank, his gait was shuffling, his fist was clenched. As in the past when we might have seen a stray pup, we stopped the car and watched him to make sure he was okay. He slowly shuffled back to the motel entrance, where we saw a woman waiting for him, so we drove off.
I had no doubt what we were seeing. as we all go through this, and earn our stars, we will recognize and have compassion and concern for others still in the journey. The recognizing of the time for placement, so personal a decision, can never be made by others. But it will come, it will come.
Mimi,I agree, as long as DH recognizes(most of the time) where he is and knows his "junk" is in "his" barn I will try to keep him home.24 hour ,in home help is quite expensive here,plus all the extras, so I will probably place him in the local NH when I can no longer handle things.Could be next month or could be a year down the line. I will take it one day at a time.The NH has asured me they will make room for it him at any time.I guess my many years of volunteering there has paid off,especially in the knowledge I gained which helps me tremendously with DH.
I always say that placement is to save the caregiver, the patient will progress whether cared for at home or in a facility. But it is such an impossible choice on so many levels for each individual family. My children kept pleading; Please, Mom, we don't want to lose you to the same disease. But I held on to the last moment, like so many, and of course it shattered my heart & I 2nd guessed myself over & over, but placement was the right decision and he adjusted. Either that or both of us would have been placed, I was that worn down. I wouldn't presume to advise anyone, there are no right-or-wrong, one-size-fits-all answers with AD. We each do the best we can with what we have and try to give strength & understanding to others. I just know that physically I could not do all that Joan does and I'm not a frail person, but I am low-energy, always have been, unlike the other women in my family who could lay out a brick patio & still turn out a 3-course meal before sundown. But I did take care of DH for ten years, so I know what it means.
In as much as you can, take care of yourself and I know from experience that is not always easy, even tho my children were available for emergencies, but they had their lives to live. FYI - From research I did in 2006, and I don't think much has changed: 15% of AD caregivers will die before their contemporaries and many will die before the patient they are caring for. Elderly caregivers with a chronic illness themselves have a 63% higher mortality rate than their non-caregiving peers. Most in-home AD caregivers are on call 24/7 with no week-ends off, no vacations, no lunch hour, and, too often, too little help. This is in violation of all labor rules.
Joan, my emotions are very similiar to yours and I am sure that when I do place him I am going to feel guilty for a while even though I know it is the best decision. My mom had to place my dad because of Lewy-Body dementia/Alzheimer's which is the same thing my husband has, anyway, the nurse at the nursing home told her that it is best that they are placed BEFORE they need to be because while they are still doing things for themselves they can get use to their surroundings better. She also said that most caregivers place their loved ones too late and it doesn't turn out as well. It still turns out of course but it isn't as well as when they place them while they are still able to understand some things.
Dear Joan, I waited too long. The police and an Alz specialist had to tell me it was time. That said, if you are thinking of placement then it is time. It is less about the patient than the caregiver. It now takes 2 people to lift my DH out of the wheelchair and into a bath/shower onto a toilet. And it is not the same two people so it's even more work when you are doing it alone or with live-in help which I had for 6 months before placement. He will adjust. He will probably be better off since all of his needs will be met 24/7 by a team and not just one exhausted caregiver. (That would be you!)
I was at my wit's end, and ready to place myself when I wrote that blog, which was Monday. On Tuesday, I got the news that Sid was approved for a 3rd day of DC. Yippeee! Then it occurred to me that I didn't have to drive him back and forth, lugging the wheelchair in and out of the car on 2 of the 3 days. Part of our service here at the Independent Villas is a bus that I have used to take my father to doctor apts. I thought - it's a service I'm paying for in my rent, so I called, and sure enough, on the 2 days that are designated for driving to apts, they will take Sid. Another yippee!
On that same day, the lady from the Medicaid Diversion program came to explain everything to me, and once the doctor signs the paper, I'll be getting help in the house, and paid respite. A third Yippeee!
My load feels lighter already. I felt it lift when C. came with the bus this morning, wheeled Sid on the lift into the bus, and drove off to DC. I had to pick Sid up this afternoon, because C. had someone else scheduled for a pick up at the same time, but starting next week - Tues. and Thurs, C. will drive him both ways. It will save wear and tear on my shoulders, lots of gas for me, and give me more time to work on my Etsy business. A fourth Yippeee!
Heartfelt thanks to those of you (you know who you are!) who offered assistance to me. It is more appreciated than you could ever imagine, but I think I'll be okay with what I am now getting. We can postpone placement now.
Joan, I am so happy that things are working out for you. You have so much on your plate that you certainly deserve to have a break. You are so fortunate that Sid likes going to DC. Now do the things that you want to do when you have time by yourself!
Joan, congratulations on the fifth anniversary of the site. I'm glad to see it and you are still going strong. I placed my wife in Dec 2007. In Dec 2011 (one day short of four years) I brought her home. She now has Hospice. Needless to say my thoughts about care facilities are different now than five years ago when I was considering placement. I'll try to organize some of my observations and post them in the near future. All that you write are emotions that I think are common to all us caregivers. Keep up the good work. Clint