I have had a very dificult week. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my miserable state of mind. I swear, if I outlive Sid and this disease, it will be a miracle.
Joan, I am so sorry. I hope you can get the meds you need to get you through this.
With all the health care changes over the past few years, all the rules and regulations are entirely different now; plus each state is different, too. There's no ONE place to go anymore - anywhere, I don't think.
I don't know what else to say - except, please, please, try to take care of yourself as best you can. We love and appreciate you here.
Joan, Ditto what Vickie wrote. Try when you do get to rest, tell yourself that you are not going to think about all this stuff until you are up from your rest. I try to do that when I get in bed at night, sometimes it works. My husband has been in an adult foster care home for two weeks now and seems to be doing ok. They take very good care of the people they have there. It is far less cost than the nursing homes in our area. I am now trying to rearrange my budget to pay for it and still be able to take care of myself. I ran into a lot of brick walls and just had to give up my hope to take care of him. Joan, get well, soon I hope.
Interesting topic...I am now on Zoloft and it works fine..I saw my neurologist about the migraines, anxiety and depression ( he is also a shrink) and though I resisted taking another SSRI, I did and am glad I did. On my visit with him this week, he made the observation that now since my DH had displayed a short bout of confusion as different from memory forgetfulness, that were he to be placed now he would have a hard time adjusting. I told the doc that he is mild, cheerful and happy in his amnesia as it were but still comments on our house, that it is paid for etc...and he would be more unhappy in a different place. He can make himself a sandwich when I tell him to do that or help clear dishes....dresses himself and other things. So I don't seen the need right now unless he had a stroke or fell and was hurt and would need care I can't provide. I was kind of surprised at that observation but didn't disagree with the doctor's view. It is always so hard to know what to do and when to do it... I have done the facility look around and have a contact should he need to be admitted. Problem for me is that most places here are no poke and that means hiring a nurse or LVN to go take glucose readings and give him his insulin if I couldn't do it,,and the fee is by the visit so that can add up too. There are just no easy answers.
joan if there is a sweet smelling flower, or a nice cedar, herbs, or anything of the plant nature that smells wonderful, please do smell it. This may sound all hippy dippy, but it could help a little. That day that you told me to put a flower behind my ear, well, I realized that I had not done that for a long time. (used to every single day) I have started doing it again since that day.
Much love to you Joan, hang on, do not get sick, and please if it gets real bad and you just feel like you could fall over, GET HELP! I am healthy and active, and I still felt like I could have croaked from all the stress.
You will make it. And after a month or two, Sid will get used to it and you will too. I remember how scary ME getting pnuemonia was, getting it bad, and for the first time in my life thought that I could die. Please take care.
Jaon, I am so sorry you're going through this awful stress. You are not alone, we're here for you. Try to take care of yourself even if it's just a ltlle bit. HUGS!
You know, with all good intent, we all say "take care to yourself" & that's a good thing. My problem is I never hear HOW I'm supposed to take care of myself! I'm doing okay so far, in pretty good physical health ( a blessing ), but how do I deal with the emotional cloud that hangs over me 24/7? I need to hear how others do it. I've been on anti-depressants for years, doing well with it. I'm now on an occasional anti-anxiety med when needed. If I go out by myself, I feel selfish & guilty. If I snap at him, I feel angry (although I'm much better on this now!). I feel a dread of future, a spark inside of me seems to have died already - and I've probably got a long way to go. I do have a faith connection, but sometimes other things just overwhelm my mind. There are just so many emotions involved in this & this is where I need the most "advice". We have a wedding reception to attend this evening & he's already grousing about it, especially when I mentioned showering! Of course he doesn't remember it from one time to the next. Here we go again! I'll go myself if need be, but I've got tummy butterflies already & it's only 11:00 AM! Joan, I consider anti-depressants a gift from God! ;)
Dear Joan, (re:medication) at my doctors suggestion I did start medication for depression, BUT first I said," I'm a strong person just help me think this through a bit I can do it without medication", he said, you, have a chemical inbalance and no matter how strong you are you can't "OUT THINK" a chemical inbalance. Dear Heart you need help now ,later you can evaluate the continuing need for medication.God be with you and Sid.
Oh, Joan, I'm so sorry that you have experienced all of this AND so grateful that you share these experiences with all of us. Sharing your unfortunate experiences at the hands of our bureaucracy are "wake-up" calls to each of us, alerting us of what the future holds and we better get busy right now - thank you. I just finished a 3-week class sponsored by AD Association and the presenter told us that we family caregivers provide in the neighborhood of $179B/year of services for your loved ones. Intelligent folks should realize what a gift we caregivers are to the system. Those numbers alone should light a fire under our hapless lawmakers to supply some financial aid to we caregivers without all the bureacratic horse $h!t (pardon me). After all, it's highly likely that we caregivers will end up in the bed next to our lo due to sheer exhaustion and disease brought on by the stress - now the government has two of us to care for. IDIOTS!!! I wish I could pluck you from your misery, Joan; unfortunately I cannot. I will provide the strongest medicine I have at my disposal - prayer. You are and will be in my prayers, my friend. It's never failed me.
Joan I am so sorry for all that you are dealing with. I am not taking medication right now, but I know that I would do better if I did. I call what happens that I am in a "funk". Well, that is just away around saying depressed. It comes and goes, and sometimes harder and longer to get out of. Sometimes I say I am just overwhelmed today. Another way of not admitting that I am depressed. I think of the things that I need to do "sooner than later", and I get overwhelmed. Right now I am trying to get through our daughters wedding in May and out of state. Then deciding if I should take him with me to her blessing in England. She is marrying someone from there. Not all of his family can come here. I really don't want to take him. I have family that he can stay with. Then I feel guilty and then depressed that this should be a happy time. Right now it is just overwhelming and another worry. I haven't even thought about what I will do in the future. My concerns right now do not even compare to what you are dealing with. Thank you for sharing so that we can see what we need to prepare for. You are in my thoughts and prayers, as is everyone here.
joan i hope you find the answers you need without adding to your own stress. it is such a pitfall the layers of bureaucracy we have to weed thru to get the right info. take care of joan. divvi
Thank you for your support. I have been on 50mg. of Zoloft for at least 4 years, and I know for a fact that I need more. There are some days that I can barely get out of bed to face the day. Mostly because there's always one thing after another after another that seems impossible to deal with.
Tomorrow (Monday), I have an apt. for Sid with our primary doctor. I'm going to have him assess him for NH care - we talked on the phone this week, and he agreed to do what he can to get him into a NH). He has treated the both of us since we moved here almost 7 years ago, so he knows I'm at the end of my rope, and I know he'll increase the Zoloft. He's asked me before if I thought I needed more, and up until now I have not. Now I do.
Medicaid is giving me nightmares. My Medicaid provider and their case manager are not giving me the information I need. They are stonewalling, refusing, and being downright rude. I have to find the answers myself. Like I need that stress.
And remember - I'm going through all of this IN SPITE of the fact that I did everthing "sooner rather than later". And I'm still stuck in a burearcratic quagmire.
Joan, I am wondering if Medicare would pay for NH for their coverage (is it 90 da?) and give you time to get Medicaid in place? I have heard of people getting that if dr. orders rehab or whatever for patient. Perhaps your dr. would be able to do something like that for Sid. I remember something from the medicare handbook they send out about so many days coverage but can't find book to check on that. I feel so bad for you that this is taking so long for you. It seems like if you have already qualified for some medicaid benefits that you should be able to have all benefits but that is not how governmental things work. Hope the dr helps you get through this with what ever you need.
dorielMl, I think if the patient is in the hospital for 3 days, then goes directly to the NH, Medicare pays for maybe 60 or 90 days. Not sure - and that may have changed this year. I do know it's easier to get into NH directly from the hospital - doctor's orders.
Believe me, that option has been explored. IF a doctor orders a hosptial stay, AND the patient stays for 3 nights, AND the doctor determines that they need "rehab", they can be transferred to a nursing home, and Medicare will pay for TWENTY days. I know all of this because that's what happened with my father. We knew he was going to the nursing home to die. He lasted 12 days. Medicare picked up the tab for the 12 days.
I am taking Sid to his primary tomorrow, but there really is nothing that requires a hospital stay, although I plan to discuss it with him.
I am exploring every single option there is because I cannot keep this up.
JOAN: Your problems with medicaid not cooperating might be solved by writing a letter to your Congressman and explain your situation. You are asking for something that you (Sid) meets the qualification required and that it is the lack of cooperation and speed that you are so upset about. Explain to the Congressman that you have this blog and have been before congress, etc. and that you feel the lack of cooperation is just uncalled for. You know how to explain it much better then I ever could in my wildest dreams. I was told by SS there is nothing the SS agents hate worse then getting a letter from a Congressman and that even though the Congressman can't change the rules...the main thing they do is speed up the results. Take care dear leader and try and get rest.
I may be way off base here, so if I am, speak up. As I understand it, Medicaid is state administered, while Medicare is national. Could it be that since so many people retire to Florida having paid state taxes while employed in another state, that Florida wants to make it difficult for retired transplants to get Medicaid because their system is over-whelmed? Please understand that I am not defending what they are doing but wondering if this is part of the problem. Sadly there is no easy fix for this.
Joan, CALL your congress critter and follow up with a letter.... I am not sure how medicaid is administered either. My best friend in IL ran into the same headaches you are now...in the end, though she was nearly broke, maybe could manage for the rest of the year, she finally decided to go on her own rather than sell off every single thing and have zero knowing medicaid would come after what is left later on...She lost her spouse in Feb. What she was able to gamble not everyone could do... I hope you get help soon and I hope your doctor will admit Sid for the 3 days so that at least you can have medicare cover some of the time you will need to pursue answers.
May this week bring some answers ...and more relief to all these huge stresses. Hope that your body, mind and soul will be refreshed in the up and coming week.
First of all, it's a good thing I checked my apt. book this morning. The doctor apt. is Wednesday, not today. So I will be sure to let you know what happens on WEDNESDAY, not today. A little stressed, am I?
Yes, the political route is on my list, but not until I get all of my ducks in a row, talk to all the right people, and get my information exactly straight.
Marche, You are probably correct in your assessment. However, I have spoken to two former Medicaid case managers and someone at the Dept. of Elder affairs. The former case managers say it is the case managers job to HELP, not stonewall, and they were horrified at what I told them.
When I told my case manager SUPERVISOR that if Sid went into a nursing home and they took all of his SS money for it, I would not be able to pay my rent, she was very nasty, and told me I would just have to "live within my means". When I told her that would mean being homeless, she repeated that I was expected to "live within my means." She NEVER told me about the spousal diversion program that diverts some or most of the SS to the spouse so that she/he won't be left homeless.Only after I pushed and pushed and pushed my case manager did she call me with a government 800# about the spousal diversion program. The rest I learned from the independent Medicaid specialist with whom I had to PAY for a consultation.
My case manager gave me a list of AL's with which they have a contract. She NEVER told me that Medicaid doesn't pay for it. That I am totally responsible for $2000-$3000 (depending upon facility) a month. They will only pay for "level of care", which can be as little as $250 a month, and caps at $1200 a month. That has nothing to do with room, board, and supplies. Common sense says that if one had $2000-$3000 a month to pay for an AL, AND had the money to also pay for one's own living accommodations, they wouldn't need Medicaid in the first place.
Joan, you have all the reasons to be stress and depressed! I know that this is not much comfort, but God is allowing this to happen for a purpose. With your leadership skills and determination one day you will rise up to the occasion to use this past experience for a benefit. I have no doubt in my mind that your doors and answers will come soon for you and Sid. Please hang in there as I feel that a very special blessing is coming your way
Joan, I get what is called "Spousal Impovershment" and get to keep all of Dado's SS. Our total income is $1400.00 a month. I talked directly to the Medicaid lady and she was very helpful. Maybe you have talked directly to Medicaid and I missed it.
These case managers can be a nightmare, I am still fighting a mistake they made and are making me pay $420.00 a month, long story but I know I should post a thread here on it to help others. (This is the case manager for the Adult Foster Home)
Can you talk directly to Medicaid, and if you have sorry , I am going to re read your posts again.
edit ok I just read above that you talk to the Medicaid provider. The woman I talked to at the Medicaid office was so kind and nice and knew all the ropes and pulled for us. I think that people are right on here, you may have to go above them.
I know what you are going through and I cannot wait until it is all fixed up. God it is tough. We so need the one stop shop Aging Center that we are trying to get, that helps with all this.
Here it's called "spousal diversion". This morning I talked to a wonderful woman at the Dept. of Elder Affairs. She, too, was horrified at the treatment I have received from the Medicaid provider. She told me exactly what I have to do; how to do it; and the timeline involved. It's too complicated to explain in a post, but she made me feel better. My first step is with the doctor on Wednesday.
Bluedaze*,
Yes, I checked the Broadmoor. It may be cheaper than other AL's, but it's still AL, and I would be responsible for the room and board, which I do not have.
Joan, I am glad you FINALLY were able to talk with someone who has compassion. I can not believe the horrendous ordeal you have been going though! These people job is to HELP, the whole lot needs to be fired.
Here in my state there is a free for service that does exactly what you are looking for, it is a place to go to get all of the information needed in one place. I assumed all states had such services but perhaps different names, here it is called ServiceLink. (http://www.nh.gov/servicelink/) Through them I was able to get a case manager for Lynn and they helped me sort through what services we qualified for. They also help with the Medicaid process and helped me, free of charge fill out the paperwork. I would think the nice lady from Elder Affairs would be able to help you find such a service in your area.
I am shocked at both the case manager and the supervisor's attitude and rudeness. Makes you wonder how they ever qualified for the job in the first place!
I hope the stress lets up to a manageable level. ((hugs))
It is unfortunate that Medicaid does not pay for AL. It forces people,to end up,going to more expensive NHs which cost the govt more. I suspect the reason is multifold. NH provide more medical care. There is NO definition of assisted living. I bet if the fed govt attempted to come up,with a definition and standards the al business would be up in arms about give interference. And if Medicaid money went into AL with no definitions I bet we would see abuse, I can picture ways of gaming the system right now. But it is a same since there are people who need the help but a less expensive alternative to a NH.
I am glad you are making some progress and have support and have people in the know tell you that your case manager is awful, though I wish you had gotten on of the good ones.
Now you keep mentioning the "Medicaid provide" which confuses me. Is this person a govt employee or a contractor?
Joan I am so sorry that you had to go through all the abuse from a Medicaid supervisor. It's hard enough when you hear that you don't qualify, but there is no excuse for her being nasty to you. I'm fortunate that when it came time to place my DH in the Veterans Home I had already filled out the admission papers & they knew that we would have to apply for Medicaid. When I had to place him in a hurry because he was aggressive & combative, they placed him & guesstimated (is that a word?) what Medicaid was going to pay & they are only billing me what my portion will be once Medicaid comes through. They didn't make me wait. He was admitted the beginning of October & we are still waiting to be approved.
I live outside of US (in Canada) but like US, requirements and bureaucracy to qualify for nursing home care varies from province to province. I've been dealing with the system (for my parents) the past several years. Even though (or maybe because?) we have a public funded health system, the waitlists to get into assisted living or residential care (ie nursing home care or complex care) are way too long. And you can't qualify (at least in our province) to go on a waitlist until you are actually assessed for that level of care. So someone can be at home (barely managing) and going downhill healthwise and not be able to get on waitlist for assisted living until actually assessed at that level. Then wait. And wait and wait. A medical crisis doesn't speed things up much even if person ends up in hospital. The wait to go from hospital to residential care (if assessed as needed) is months long. And the person is placed wherever there is a bed. No choice and no opportunity (due to a recent change) to move to another facility. It's a case of take the placement offered wherever or go to bottom of list.
I had been in many of our local assisted living places and residential care facilities through some volunteer work so was more aware than many people of what was available and varying levels of quality of care. Even so, I wasn't prepared to discover that when one of my parents needed residential care, some of the facilities were not licensed to provide the level of care needed ie they weren't equipped to manage all stages of care. Rather eye opening.
The diversion of income (if needed) is not widely shared in our province. It is available but when some social workers couldn't answer my questions (asked on behalf of an elderly friend whose husband had AD and they were on limited income), I wondered what was going on. Eventually someone was able to explain that the spouse remaining at home would qualify to keep most of the income (to live on). But that is hard to discover bit of information.
After numerous phone calls, meetings, assessment appointments etc, my conclusion is that the criteria is changing all the time and many of the people who actually work in the system (supposedly administering the criteria) aren't up to date on the various changes which results in much frustration for those who are trying to get help for their loved ones. I would ask questions of social workers and liason staff and community case managers and they often didn't know the answers or would give me an answer that contradicted what the last person had told me. I shudder to think how any older person-----on their own without a family member to advocate for them-----ever manages to navigate "the system".
Thank goodness for the individuals who do respond to us with compassion and concern. Some stand out in my memory-----one hospital case manager (who happened to be someone my daughter had babysat for)-----she was super and offered some excellent explanations. More recently I had a social worker who expressed her own frustrations regarding the latest criteria change and offered whatever support she could to me. A very caring and very human person who balanced her professionalism with practical empathy for those on the frontlines of caregiving.
And to think this is just the beginning of a demographic that is going to be much larger within the next decade . . . what will it be like when we need these services?
Thank you, Rachelle, for saying so well what I experienced in Vancouver, Canada. It is so painful for me to revisit, even in memory, that I can't do it. Yes, thank goodness for the few who do respond with compassion and concern.
I had a long talk today with the director of Sid's Day Care. She told me that they provide services like I had been looking for - someone to navigate the system for you, and she told me of other services they provide in the home free of charge. But that's not why I'm writing this comment. I am writing because she was very familiar with the Medicaid system and was not one bit surprised at the treatment I have received. Apparently what I have been experiencing is the norm, not the exception. Talk about depressing!
Sid is at the point now that he cannot walk more than a few feet. It is getting worse by the day. When I take him to the doctor tomorrow I am seriously considering telling him that I'm not taking him home. He can figure out what to do with him. I know that sounds harsh, but the situation is desperate. This is EXACTLY what I tried to avoid by doing everything way ahead of time. Didn't do me any good. It's because it took me so long to get answers that I ended up where I am now.
If things ever get settled, and Sid gets placed, be prepared for a very long, informative blog that I hope will save others the grief, stress, and aggravation I have encountered.
Joan, I am having the same problems with medicaid and I dream about taking my H to the doctor and leaving him there for them to do something with because I can't seem to do it any other way so what are we suppose to do! I totally agree with you that it would be a miracle if I survive and live longer than he does. I just hope that doesn't happen because I want a chance to live A life. I have been taking care of him for so long that it would be totally unfair if at the end of all of it I can't have my life back.
Joan, I hope the increase in meds will help you. I remember well in 2007 when I simply could not get out of bed and what a difference Lexapro (antidepressant) made in my life. I also remember people telling me exercise would help, but who wants to exercise when you feel like that? I hope you find a swift resolution for Sid/Medicaid/placement. You have had so much on your plate. I'm sending you some hugs... and positive thoughts and energy.