It just occurred to me that because of all the guilt and hesitation on many caregivers' parts about placement, it would be really helpful if clinicians had a uniform way of evaluating patients that need to be placed. Similar to the good (or bad) ol' MMSE, it could be a point system in which behaviors, physical needs, concurrent illnesses, caregiver issues, are all given a point value and when they add up to a certain number--bingo--time for placement.
We all read over and over about caregivers pushing themselves beyond the limits of sanity, ruining their own heath, because they resist placing their LO's. In my own case, our neuro was gently pushing me to try a respite stay, but out of fear of Steve's behaviors, I didn't listen. However, if the neuro had been able to say--Steve's score on the Placement Scale is 20, a 22 means he should be placed permanently, I would have sat up and paid attention!
I don't think we caregivers are always the best judge of when placement should take place. We are too involved--emotionally--to be rational. Perhaps that's why too many say they waited too long--we're not getting enough help from the medical professionals in making this decision.
MarylynMD- There is a very scientific way of evaluating a patient for placement, and although quite involved, it is suprising that they do not use it more often. The decision is very simple in nature, and it is quite easy to master, but I am surprised that no one uses it. In a brief synopsis of how the process occurs, here is a condensed version of it. a. go to the bank and get a roll of quarters. Open the roll, and select the shinest one. b. Take that quarter, place it in your right hand. Flip the quarter, and catch it with the same right hand. c. Take the quarter and flip it onto your wrist. If it is heads, definite placement, Tails means no placement yet. d. You can take this test over and over, and when the time is right, you will know for sure. This is foolproof, and works in all cases.
marilyninMD, I'm sure our LO's are perfectly fine with too emotionally involved us making the decision. Money grubbing strangers looking to feed the economy might not be the beest decision makers. Phranque, have you seen my two-tailed quarter?
In my case, my wife's Family physician and psychiatrist recommended me prepare for placement both for her best care and my own health (which I refused to see as an issue). It took nearly a year to prepare and become knowlegeable about Memory Care options, affordability and quality of care...and to MarilyninMD's point, all done w/o any scale for measurement. Even if a spouse does not forsee admitting their LO to a Memory Care facility, it would be time well spent to evaluate all options as early as possible. Just by being well informed, one can then make the best choices in the future. Be assured there will be those that will support those that disagree w/whatever path you choose to follow.
I agree that it would be helpful if we could always say—okay, right here, right now, this is the point where placement is necessary. Right now my husband is "nursing home eligible", meaning that he is already certified by our council on aging, which is the agency in this area that coordinates care, and which works with nursing homes to see if people need nursing home care. Because of this certification, we finally got some in-home assistance. If and when a permanent change needs to happen, all the paperwork is already done.
So even though my husband is eligible for nursing home admission, he's still at home. But now people who know me are starting to tell me that I'm not really seeing how close I am to the edge. I'm finally starting to take notice of what they are saying. But I keep putting off this final move out of our home. For anybody else, moving my husband to a nursing home would be a practical matter. To me, it's a matter of the heart. That's why I keep putting it off. But I can see very clearly that placement isn't very far off.
The problem with an evaluation of the AD person it has its ups and downs, because there can be many different reasons that have little to do with the condition of the AD person. It could a financial decision, a decision based on children at home and/or the welfare of the caregiver.
Almost two years ago my dh's Neuro said I had about two years and then he probably would need placement. Well I am coming upon that two years and his new Neuro told me just a couple of weeks ago that I should be looking. Therefore, for me, I have had two medical opinions that support placement. This will help me make this decision and I do feel the time is nearing and I think I maybe looking at later this year.
I wonder if that would really help with the guilt? I had three doctors, his case worker, social services and his family telling me I should place Lynn. I didn't and held on until it became a choice of him or me. At 41 my neuro said if I had another TIA, it could kill me. It took that and my family crying and begging me not to let this disease kill me to make me finally decide to place him.
And still, I thought the guilt would eat me alive. When he looked me in the eyes and said he would never forgive me.... another peace of my heart took a fatal blow. Even though it turned out far better than I ever dare dream it would, three years later and I still regret that I couldn't keep him home.
DH often asked me to promise not to place him. IalwaystoldhimI wantedhim home. I believe home was the best place for him. However, I also told him that if his condition worsened too much, or mnne did, or if something else happened, Iwould have to place him. When his condition worsened, I started asking our AreaAgency Case Mannager about considerinng placement, her rsponse was, "But, you said you weanted him home." (This is 4 years later). I had checked out a couple N H early on, but renewed my efforts, and placed him on waiting lists in Apr./May 2011. The Neuro-Psych. DR. had stated he was now a risk to himself because of behaviors. Still on waiting lists no matter what I did until I found a way to place in a Memory Care(locked)at an ALF, ev en thoughg financial suicide for me. What ultimately got him placed was a crisis. Something hap[pened to triphim off and Ihad tohave the Police takehim to the hospital. Ultimately, he ended up where I wanted him to go. I don 't fault the medical folks completely, though. The laws protecting a person's rights areextremely stringent about placement. Some of thoselaws and rules needa sane adjustment.
The time for placement is when the caregiver--not the individual w/AD-- has had enough. My children were begging, please, Mom, we don't want to lose you to the same disease. But I held on until either he was placed or I was. Listen to what people are telling you about YOUR life. Your LO will progress whether at home or in a facility, no matter who does the CGing. No matter how old you are today, you are getting older, just how long do you think you can do this? I tell myself not to do guilt--I didn't cause any of this, but the sadness was overwhelming, I will never forget. And for a long time I kept thinking I could bring him home, I'd try harder, do more--but I was completely spent. I had no more to give and my health suffered, the doc said it was not unusual for CG's like us. There is no 'time' when someone should be placed, the right 'time' is when the CG needs it.
Okay, I am a caregiver who needs it but H refuses to even consider it. It has been my right time for several months now, but I am powerless. So what hope is there for me? I find it difficult to believe I am the only one in this situation.
If only here was a test, a number...guilt will be what will hold me back from placing him. I wish it was as easy as flipping a coin. I'm very near ready..had enough. At this ttime, he is still too aware off his surroundings...his mother set him to Austrlalia as a child migrant, he was abused, has hated her all his life from then on... I would be seen to be like his mother and hate me too. We have our name down at 2 N/homes, one said to keep in touch as beds come up, and it's just a matter of when the time is right for us. The kids have said it's up to me...they understand, and they see me struggling
Of course like everyone else, I waited too long. When I finally hurt myself pulling him up, it started to sink in. I didn't know how exhausted I was until I actually got a nights sleep. I had neck surgery after he was placed. Now we are both in a good place. I have no guilt. I did what had to be done and should have done much sooner. He is very content and I am too. I see him everyday. There is no answer to when. We are all winging it. We just do what we can do until we can't do it anymore.
Abby, the time will come, as it has to many of us (most recently it was Carosi) when our spouses deterioration leads to a crisis, and they have to be placed - often after an admission to a hospital emergency dept. - whether they agree to it or not. Go to the top of this page and click on "search". Then type in "Carosi:" (but minus the quotation marks). Then click in "comments." You'll be able to follow her journey in getting her husband placed. In my case, my husband fired any help I had in the home, refused to move with me to an assisted living facility, and it was only after an emergency admission to the hospital that I was able to place him, and that was still with much opposition. If you do your research now, then when the time comes - AND IT WILL - you will be able to stick to your guns. It's a pity that in some cases it has to come to this, but it does, and you are not alone. One of the comments that many on this site make is "I'm going to put on my big girl panties." I still find that helpful, and I'll use it to bolster my courage this coming Friday when I go to court to settle some unfinished business with the estate and his children.
There is some kind of a point value assessment. Sid was first assessed by Council on Aging over the phone based upon my answers to questions about his physical and mental abilities. They put him at a 3 out of 5. The next time the case manager came to the house to assess him for Day Care. She put him at a 4 out of 5. When money is availiable through whatever agency is funding him, he will get some in-home care, and as soon as my next phone call, he will placed on the list for an ALF or nursing home. He doesn't need a facility now, but it may be 2 years before the money is available and his name comes up.
And I do agree with Betty's statement about time for placement is when the caregiver has had enough. My son, sister, and cousin, are already encouraging me to think about it "sooner rather than later", because both my son and my sister say if I don't do it "sooner", I won't have a "later". They don't want me to be dead before him.
Abby, Lynn too also refused any in home help, and flat out said he would not go to a nursing home. After all, there was "nothing wrong with him". When his case worker told me they would not subject their help to Lynn's abusive behaviors, she also told me that with "someone like Lynn, a POA would not be enough, that I would have to file for legal guardianship" Though I wasn't nearly ready to place him, she advised I do it ASAP as one never knew when a crisis could occur.
I am not sure if it is the same in all states? But here in New Hampshire, if I didn't have legal guardianship, if he refused to stay in a nursing home, they could not make him stay. I couldn't believe it!! The laws need some serious adapting to diseases like Alzheimer’s. I was fearful about going for the legal guardianship, but it was a very simple process. The court appointed Lynn a lawyer to appear in court for him. Our Neurologist wrote a letter that it would be too upsetting for Lynn to appear in court, so he was spared any trauma and heartache.
Due to my financial situation all fees were waived. I was rather nervous, but there was no need to be. When the judge came in, I went to stand up and he said "sit, sit." He then came and sat down right at the table with me!! He then said how very sorry he was to hear my husband had Alzheimer's disease and asked how he could help. Blew me away!! Lynn's attorney was the same one who had drawn up our original POA, he did meet with Lynn before the hearing. He told the court the decline in Lynn was substantial and that he needed total care, was unable to make any rational decision and was a danger to himself and others. That was all it took.
When the time came, I could place Lynn.. whether he wanted it or not. Trust me, he didn't! The day of placement was horrendous! I wrote about it here on Joan's. Depending on the facility, even with guardianship, they will not keep someone who is out of control. If I hadn't been able to stay there and help him settle down and transition, they would have had to place him in the hospital for "medication adjustments" I am glad it didn't come to that. It was worth it to me to stay there with him for most of the day and night. Some can't do that, so the hospital is their only option.
My point in sharing all of this is….Abby... if you are ready, if you NEED to place him. You can, whether he wants to or not. It will be hard, no doubt. But not as hard as you breaking physically and emotionally. Betty is correct , the "right time" is simply when you have done all you can for as long as you can. Don't let this disease claim you too ((Abby)).
I've (during the last 8 months) consulted two lawyers about my situation. They gave me such different takes and one has referred to me to a guardianship specialist. I am requested to be guardian in the dpoa and in the medical care proxy. I am caught by your statement that you were told, "a poa is not enough". Why is this? Is it a state thing or something in anticipation of the challenges that might be brought by the "patient" (for lack of a better word)?
H cannot possibly appear in court as he would say everything is fine. Truthfully, in his assessment with the care manager I've hired he actually said in response to her direct question, "no, no one has poa".
I will meet with N next week and guardianship specialist soon thereafter; although I have been told by another lawyer who is a friend and not someone professionally involved in this that the dpoa should be enough. But this is not her field and she has been very careful to say it is only an opinion, and not expert advice.
mary75*,
Thank you for your advice. Yes, I have followed Carol's story. Your situation sounds so much like mine. Yes, I have visisted four places; two seem great- one a bit not so much and another a bit too much. These are not snake pits; especially the two I favor are nicer than our house! Wishing you the best with the court. Thanks to posters like you I do not feel alone here!
Abby, I really don't remember all the specifics, but I do remember his lawyer telling me that with any disease that alters the mind, yet they are still able to communicate and refuse care, it is best to have legal guardianship. I do not believe it is just New Hampshire, but all states. Don't quote me on that though....
Here are some threads on guardianship from this site… you should read through them, maybe they will help you? There are also many stories on here about all of us having to place our loved ones... they could help too.
I know some people have been fine with just the POA, but many of us were told it would not be enough. I am betting we are the ones who had combative spouses who would refuse to stay. The nursing home did request a copy of the court order, so I was very glad I had it!! Always better to have our ducks in a row.
Joan--It sounds like Florida provides much more support for caregivers. In Maryland, there was no assessment of any type available and no case manager. The only funds available were $300/year from the county and about $600/year from the State. Obviously, that doesn't go too far. I had to make all the decisions re starting daycare, bringing help into the home and placement in an ALF without any concrete evaluations from anyone. The only "scientific" data I had was the MMSE score--and I think we all agree that's not worth too much.
I checked with our health insurance provider as well regarding case management, but it's not covered until the patient has been certified for hospice.
In all my wanderings through the maze gaining authority too Care for DH, aDPOA is for and up[ to including everything financial for him. I also was his Patient Advocate(Medical POA,if you will). Legal Guardianship provideesbroader authority over him. It can but doesn't always include authority over the financial situation(Conservatorship). I hold both Legal Guardianship and DPOA for DH. Even so he can, and has refused some hings in the NH--PT being one, socializing another. Aswith e verything else withthese Diseases, things will likely change.