FOR MANY YEARS I TOOK CARE OF MY HUSBAND AT HOME. I USED ALL OF MY RETIREMENT AND SAVINGS TO GET HIM HELP(HE HAD A BRAIN ANEURYSM. MULTIPLE STROKES, 7 BRAIN OPERATIONS AND 2 OTHER OPERATIONS,SEIZURES, SEVERE FRONTAL AND TEMPORAL LOBE INVOLVEMENT ,TOTAL BLADDER AND BOWEL LACK OF CONTROL AND TOTAL DEMENTIA. HE WANDERED ALL NIGHT,SEEMED TO BE ABLE TO GET OUT OF EVERY LOCK SYSTEM(HE HAS HIS PHD AND WAS EXTREMELY BRIGHT),DID 80,000 DAMAGE WITH WATER TO OUR HOUSE. I QUIT EVERYTHING TO TAKE CARE OF HIM. THE 1ST YEAR I WAS ABLE TO WORK WITH HIM AND SAW SOME IMPROVEMENT ( I HAVE SEVERAL DEGREES AND ONE IS IN WORKING WITH DISABILITIES). EVEN THEN I HAD REAL DIFFICULTY WITH HELP SHOWING UP VERY SPORADICALLY AND WHEN THEY DID MY HUSBAND WOULD DIG IN HIS HEELS AND REFUSE TO LISTEN TO THEM, WORK ON ANY THERAPY ETC. AFTER A NUMBER OF STROKES,SEIZURES.WANDERING ALL NITE OR WHEN WE WENT OUT HE DISAPPEARED, MY KIDS AND A FAMILY FRIEND WHO'S A PHYSICIAN SAT ME DOWN AND SAID IN NO UNCERTAIN TERMS HE HAD TO GO TO A NURSING HOME IMMEDIATELY. THEY ACCURATELY STATED THE LIVING SITUATION AS UNSAFE AND UNHEALTHY FOR ME. THEY STATED THEY HAD ALREADY LOST DAD AND WERE UNWILLING TO LOSE ME. I CRIED AND STATED I COULD DO A BETTER JOB THAN MOST STRANGERS AND HE WOULD BE LOST IN A NUSING HOME.THEY STATED ACCURATELY THAT MY WORLD DUE TO HIS 24 HOUR CARE HAD BRCOME DIRE TO MY HEALTH AND VERY LIFE. I NO LONGER HAD TIME OR ENERGY FOR MY FRIENDS, GRANDKIDS OR EVEN MY OWN HEALTH, IN OTHER WORDS HIS DISEASE HAD TAKEN A TOLE ON ME, THE KIDS,THE GRANDKIDS, AND OUR FRIENDS.THEY ALSO POINTED OUT THAT I WAS NOT ONLY HURTING MYSELF, I REALLY WASN'T HELPING HIM ANYMORE AS HIS DEMENTIA HAD PROGRESSED SO RAPIDLY. IT WASN'T UNTIL HE WAS IN THE NURSING HOME FOR AT LEAST A YEAR THAT MY HEALTH STARTED TO IMPROVE, MY WORLD STARTED TO LOOK BRIGHTER, AND I REALIZED HE ACTUALLY LOVED HIS NEW SURROUNDINGS AND CONSIDERED THE NURSING HOME HIS HOME. I WONDERED HOW I CAME TO BELIEVE NUSING HOMES WERE THE LAST CHOICE. I REALIZED THE ANSWER: IN MY FAMILY WE'VE INHERITED IMMUNE DISEASES(LUPUS AND SCLERODERMA),ARTHRITIS,AND HEART DISEASE, BUT ALMOST EVERYONE DIES AT OLD AGE WITH THEIR BRAINS AND BOWELS VERY INTACT. THEREFORE NO NEED FOR NURSING HOMES. I BOUGHT INTO THIS AND BELIEVED I COULD HELP MY HUSBAND EVEN THOUGH MY HEALTH WAS FALLING APART, AND MY HUSBAND WAS A DANGER TO HIMSELF AND OTHERS. I BELIEVE THERE MAY STILL BE A STIGMA TO NURSING HOMES ON VARIOUS SITES,AND WONDER IF THIS COULD BE TRUE ON THIS SITE AS WELL. ANY THOUGHTS?? LAUREL
Yes, it seems to be a stigma to place a loved one in a NH.But I don't think that way,we are not deserting them,we are giving them the best life we can. WE have to know when we can do no more,I have stated on this site that I will place DH when necessary and not feel guilty about it.I volunteered for many years at a local NH and in general most of the residents were very happy.You have done the right thing,you also have to have a life.We do not have to be martyrs just to show our love for our DH,s.
Laurel-there is no reason for this disease to claim two lives. Many of us have found that our loved ones actually did better in a facility. They had more mental stimulation and probably felt more comfortable with others like them. They no longer had to struggle to "fit in". As you step away a bit and are not always totally exhausted you can think more clearly and be a better advocate for your husband. There will always be those who fault you for "putting your husband away". They are the folks who never walked in your moccasins and don't worry about them.
I would say that it's not just a stigma that prevents/postpones placement, but also, the cost. In this area, a good nursing home with a dementia unit can run $9,000 a month; dementia ALF, approx. $6,000/month. For many people it's a case of limited resources; and the Medicaid spenddown process can be traumatic, to say the least. My guess is that if Medicare covered long-term care, placement would happen earlier and more often.
Funny. a few years ago when I first started reading on this site, it coincided with several people putting their spouses in homes and I thought well, I will never do THAT! But over time and going through the incontinence, etc etc, I realized that as many here have said, if you have seen one dementia patient you've seen ONE dementia patient! And what I think all of us here have recognized, as spouses we must make the wisest choices for US and ignore the family traditions, etc. I think that in many cases here the problem comes down to FINANCES. Especially with the younger spouses coming up with thousands of dollars a month to put someone in an ALF isn't easy and impoverishes not only the spouse but their children. In my case I eventually had to yield to the reality that an aide and I weren't able to handle changing a bed bound still strong man on our own.
In any event, welcome.. We do recognize and honor what you have been through. But a small comment. Your discussion would be a lot more readable, and reponses more likely, if it were not in all caps!
Laurel--I think if you hang around here enough you will see that we are in all kinds of boats. The decision over when and where to place is probably in the top 3 discussion topics...it's definitely something most of us wrestle with sooner or later. Whether or not that's the option we ultimately select varies from case to case.
From reading your opening post, it seems like making the decision to place your husband wasn't an easy one for you. What I think is that you hit that point of crisis--the point at which your family intervened on your behalf--BEFORE you joined us here, so what you're seeing is that many of our posters aren't as far along in the journey yet, so they are going through that process now, or maybe haven't gotten there yet.
Additionally, since Alz is different in every patient, some of us find there are workable means to care for our spouses at home, so there are plenty of discussions pertaining to that, as well as discussion of the emotional issues related to caring for an ill spouse in general.
What you won't find much of here (and if I'm reading you correctly, maybe this is what you're worried about,) is judgment toward people who've made the placement decision. Placement can be the best option, and it has been for many of us. We've all got to wrestle with our particular situations.
There is no stigma to nursing homes on my website. Everyone's limit of endurance is different, and everyone's financial situations are different. We support everyone's decision without judgement. If you look at the top of this page, there is a "sticky" ( topic that remains at the top) for those with spouses/partners in facilities to discuss and support one another.
Some people on this site have the financial ability to hire round the clock in home help, and are doing so. Others have decided on placement. Others are going it alone at home because they have no funds, and are on waiting lists for State aid. Most people go way beyond their capabilities before making a placement decision because they feel guilty.
Whatever the decision, there is always struggle, guilt, and second guessing involved by the spouse who placed their husband/wife, not by the members of my website.
I would like to welcome you and ask you to go to the home page - www.thealzheimerspouse.com - and do a search in the "previous blog" section on nursing homes, placement, or Assisted Living. Do the same in the search feature at the top of this page.
Also, read my most current blog on the home page - Reaching My Limit.
Please come back often and you will receive lots of support and information.
Laurel--I've been here a while, and even before becoming Caregiver to a Dementia spouse I ws his Caregiver because of Mental Illness. he's also lerniing disabled. It was just naturalto take careof him at home--that's how we began. (I also have my own slowly progessive disability). Iconsider theMental Breakdown the start of my Caregiving. That was March, 1988. At first it wasn't so tough, as DH was stillable to drive and do things independently. theatslowly chsanged. in Aug,-Sept. he was DXd with Vascular Dementia.The proposed plan was to send him toa NH. I toldthemi couldn'tr do his care alon anymore, but with help I could and believed the best place for him was at hoome. In 2010, I began expkloring the idea of placement. Even with help (then 11 hrs a week,eventuallybumped to 16; and 4 hrs help for myself). I puthim on the waiting liusts atthe 2 places with the serv9ices needed in Apr-May 2011. I waited. In Sept-Oct. I viogorously started searching for a way to get him in somewhere... The waiting listr hadn't moved, his condition was worsening. Just asit appeared that a solutiopnwas found--financial suicxide but I was proceeding, there was a delay. Beforethat was resolved, wse had a crisis--an Altercation, and I had the Police take him to the hospiotal for med eval. adjustment. For 2 weeks he was shifted from 1 facility or unit to another as new events occurred. Finallyhewas going to be placed in a facility too far away for me to get to, untiul an 11th hour save--the NHI wanted him to go to--1st choice--callewd with an opening--2.54 hopursbefore the transfer. He went thhere.He was admitted Jan. 30. I had saidhe belongexd at home--the best place forhim--and it ws in 2006. At that timeI had no clue whatwasin store. Th4e biggest stop in getting him place4d wasfinances. He went in underMedicaid--essentially from the community. During the 2 weeks hospitalization bvefore placement, it was discovered he has long standing CHF, previously undiagnosed. Since then further examination and treatment has found a complicating heartmurmur andAortic Stnosis. T^he CHDF can be treated with meds, but the heart murmurinvolves faulty valves, treatment for those would be repair or replacement, and treatment for the Aortic Stenosis is a heart transplant--- not options for him.
Getting to the decision washard. Making the decision not so much. Maki9ng it happen was H**l. Adjusting to it is a work in progress.
Personally, I hink many ofc us areraised to believe the marriage vows mean we have to sacrifice ourselves for our spouse. In reality youy have to look at them all together and from both of you. Love, Honor,and Cherish, in sickness and in health. Nothing there says sacrifice your health, yourself for the other. They say to do all in your power (each for the other) to see that all care is provided and accepted. There is no "Do it all yourself" clause.
If you havrn't noticed we have a Sticky now for those of us who are Spouses with partners Placed, just as we have the one for Wdows abnd Widowers. We are all on the Dementia Road; some just have to take this detour on the way.
One of the reasons it may seem to you like nursing home care is at the bottom of the list for discussion might be because once a loved one is placed the caregiver has relief from the daily problems and concerns with with their mate and don't need to ask as many questions on how to handle in-home daily living problems.
For many it is the new things that happen with your mate that is at home that seems to be the major concern for most and many want to prevent placement as long as possible and they come here to get information on care that they have never experienced. If you have problems with nursing home care there are many on here that could help you if you have any questions. Sorry, I am not one of those that have placed my dh yet but, I know I will have to face that problem sometime this year.
I placed my hb in the special unit of our local nursing home in Oct 2011. It changed our relationship: we could enjoy each other's company and he had more stimulation there than at home. (More than 1 person looked after his needs, and staff said they didn't know how I'd cared for him by myself.) It was a freeing, healing experience for me. Hope that doesn't sound too selfish. No stigma on this site re nh's that I've seen. It's another way to fulfill our caregiving role.
Briegill*, it's really good to hear from you! Thanks for the note re. capitals - I found it hard to read, and there is so much of value the posts, that I was sorry to skip through because it was difficult for me.
There are many different reasons some choose to care for a spouse at home. As difficult as that may be, some choose to do so because of the extreme cost, some are unable to find a suitable facility, some feel pressure from children and relatives to care at home and some feel the "sickness and in health, til death do us part" is the compelling reason. I'm sure there are other reasons as well. Whether you end up placing your spouse or not, now is the time to evaluate all the options for the future including medical advice, eldercare attorney and state/local government agencies. Once informed, I hope you find your eventual decision for placement works for the best. I can say that those of us that have placed our spouse in a facility have been, in general, very pleased with the outcome. Our challenges, while different than those that care at home, continue and can be as difficult. I hope you find this site helpful and welcome to our ever changing world.
laurel, as others have said there are many reasons why spouses do/do not place their LO in a facility and quite frankly everyone who has or has not agonizes over their decision-is it too soon, is it right, can I continue to do this at home, can I afford what I am choosing,etc. What is right for one family may not be right for another. Just like each person with dementia is different so are the family dynamics. I have never felt that anyone on this site has judged another member for placing a spouse in a facility, because no matter what our individual choices are we know no decisions come easily.
I admire your courage for knowing when placement was in the best interest of your spouse and YOU. Too many of us here wait entirely too long. Welcome to Joan's wonderful, supportive family.
Good observation, Charlotte. Welcome Laurel. You've made some important points. I have been aware that many people disapproved when I placed my husband in a Care Facility, and some still do. I placed him for many of the same reasons that you did. So, yes, I think there is a stigma, but I haven't noticed it on this site. Here, people have been on the firing lines and know what it's all about.
Laurel Speaking from my own experience and observations, there is no stigma here. It does exist and I have felt it, from DH's family, but then they think he's going to recoverand be able to go to an Adult Foster Home. Other than holding me responsible for his condition, they wrote me off long ago. That doesn't matter. The bottom line is that he is getting the care he requires and which I cannot do myself.
Make yourself as comfortable as youcan with hisreality. You did aqll you could yourself. You enlisted the help of a NH with its 3 shifts of workers to do the job no one person can do. You are still the Commander, but now have a small army to do the hands-on-work. Our LOs areexactly wherethey need to be.
Thank you so much for sharing your thoughts and experiences. I know that I would not have been able to endure what you went through - plus having the ugly disease takes the sweethart that you knew as a different person earlier in life.
I thought in the beginning of my husband's disease, that somehow, I would always be able to take care of him always.. That MY care would be the best for him. ME - I didn't even think about.
Recently I did get ill, had to go to the ER - I have no help and he was with me. I realized when he started to act up that there were times - more and more, and situations where I was not able to handle him. At that time, I would have put him in a very large cardboard box with a bull dog for protection as I was so sick.
The local Alzheimers Association heard my dilemma - I had called before and had not gotten help - but this time, they stepped in and put him in respite for three days so I could get in bed and get well. The place was nice, new, clean - the staff were wonderful. The bed rooms were spartan to say the least and of course he didn't like the meals. It wasn't as " nice " as I would have liked, would have wanted him in a place that more closely resembled our home.
BUT he was in a place that met and took care of his needs and the extra touches I thought of weren't needed. He sure didn't notice. I would place him as soon as I get through writing this email if I had the funds. He is very high functioning, but I used to be and am not now due to his illness. He talked and interacted with the others, had a lady that he seemed to connect to. They were so sweet - like the first day you took your child to kindergarten and was so happy and relieved when you saw that they had met a friend.
So, if there is a stigma anywhere it is because others haven't walked in our particular shoes and just don't understand. I know what is best for me and I know what is best for him - given our resources. At this point, I don't care what others think - family, friends have dissappeared - others in general. Everyone is full of advice, but offer little to nothing in way of help.
Be happy and content - as much as you can - that you are still taking the very best of care of him.
God bless you for the care you have so freely given. I hope you are able to get some peace and rest. You deserve it.
To your statement - "Laughter and happiness are always neck-to-neck for last place here. Nursing homes aren't even in the running."
We have a rough road here and are giving each other support through all the twists and turns. As I said to Laurel, there are plenty of nursing home discussions here - almost every one without judgement. And I put the one you started up as a "sticky" - a discussion topic for those with spouse in facilities to share their experiences and support one another.
As for humor, if you type in "humor" in the "search" at the top of the page - a long list of topics in which we try to put a few smiles on each other's faces, will come up.
Sorry, but I guess our senses of humor are different - I didn't find the You Tube video funny. Speaking of which, if you go to the humor discussion (Let's have some humor) that is on this page, I am putting up a link to a video that made me laugh out loud.