Hi, I have not posted here as of yet but Have been reading posts for several years. My Husband is 68. His Alzheimers seems to be progressing rapidly the last 3 to 4 months. I am his only caregiver , 24/7 for the last 4 years since he could no longer be left alone. I have tried to put him in a Adult Day facility twice.. The first time they wouldnt take him because of anger and aggression. Now that that has subsided quite a bit I thought I would try again.. Now they wont take him because he wanders and they are not a Locked facility.. neither adult day center in town is. The neurologist told me last fall that I needed to get him on a waiting list for a nursing home.. which I have done.. Of course I have no idea "when" this opening will happen. I did go through the process with medicaid to help with the financing and was approved. At that time I was told that I would be called for a "health assessment" which has not yet happened..This was back in the fist week of December. How long does it take to get this? I am so tired.. He is in stage 6, he cannot talk in a way way that makes sense, he is deaf, He is peeing everywhere but the toilet. He is having trouble walking and is starting to fall if I am not right there to help him. I got him a cane and also a push walker to help but he has no idea or the concept of how to use them and tosses them away. He has not been able to dress himself or do any of his own personal grooming for well over a year. I try to keep him busy but all he seems to want to do is tear at his clothing or take his slip on shoes on and off.. He cant even get them on and often ruins them within weeks trying to put one on over the top of the other. He does not get himself water or food..If I do not bring it to him or bring him to the table he doesnt even think about it. I am struggling to make ends meet because I cannot work. I have a son that stops by to watch him so I can quickly run and get groceries or go to the doctor myself. ( I have High blood pressure and am in Tachycardia most days) Stress related I am sure. I have not slept in our bed for over two years because of his Night terrors and striking out, and the couch is not the best place to get a good nights sleep I am sure. He takes trazadone for sleep and they gave him Lexapro recently to help with his aggression and anger. He is still on namenda but they took him off of aricept. I am feeling a bit overwhelmed.. Now his attitude and ornery is back on the "upswing" I I have just had enough... So back to my original question... How long does it take the "state" to get around to their health assessment? I cannot seem to ge a straight answer from anyone. And is there some other option that I am missing? And No-- except for the one son that stops by on his way home from work once a week or so-- I do not have any other help from family or friends, they seem to not want to be "bothered" and are "uncomfortable". His family is local.. Mine is not... I am feeling like a prisoner. Except if I was a Prisoner.. I might actually get some sleep..
I am sorry you are dealing with this. Everyone here is a great help. I am not sure about the assessment. but this is a wonderful place to find support.
Medicaid varies somewhat from state to state, but I imagine the case manager who did your application is probably overworked…in my experience as a (former) public health nurse, their caseloads could range from 300 to 700 depending on the county, and the job was pretty much un-doable. So where that leaves you is probably…if the Medicaid case manager at your Dept. of Social Services is going to schedule someone (a nurse? ) to do the assessment, I'm not surprised to hear that they are that far behind. Perhaps your doctor's office can help nudge DSS with a phone call explaining why your husband's case needs to be expedited. In my experience though, it may be folks from the Office for the Aging who are more helpful, if you can get hooked up with the right people. (Again, this varies state to state, and county to county within the state.) It may be that a social worker, coordinated through your doctor's office or through Office for the Aging (or whatever it's called in your area) can help complete the Medicaid documentation and help facilitate looking for a placement. If I were you, I would apply to more than one nursing home, and take the first available bed. You can always transfer him later. In my experience, calls to Medicaid case managers tend to not be returned, because they are just too busy. You, or whoever you can get to help you navigate "the system", will probably have better luck talking to a Medicaid supervisor.
If you don't mind, could you tell us what state, or even what county of the state you are in? We might be able to direct you a little better. Another thought: If you can get your doctor to admit your husband to the hospital, it would be a lot easier to place him directly from there. Just be very firm in refusing to take him back home--let them place him in the first available nursing home bed, and then transfer him later, as I said above. It sounds like you are getting pretty close to a crisis situation, if you're not there already. It's not going to do anybody any good if you keel over before your husband does.
I would talk with your DH's PCP, see if their office can help. Tell them he is now a fall risk and is injuring himself. My DH fell once in the bedroom and pulled a big box tv down on himself. It can happen so fast. Also at this point for us we called in Hospice and DH was approved. That may be another route you could take.
Cranky pants, Elizabeth* gives you good advice. Do you belong to a church or synagogue where members may be willing to volunteer to run errands, sit with your husband while you go out for a few hours? The pastor or rabbi may have connections in your community who can help with expediting the medical assessment. Just a thought.
Another resource is to call the local hospital and ask to speak with the social worker. They may be able to help you.
Also if all the "free" services don't work, three's always hiring a geriatric care manager ( an RN or social worker typically) who for a fee can help you. You need to be clear about the service you want and will pay for and understand how the care manager estimates how long it will take to help you. I say this because their fees run from $110-$125 per hour sometimes higher and you want to make sure you don't run up a large bill. Ask if he/she charges for travel time and if so what is the rate.
I have no experience with medicaid but knowing how over burdened the system is it could take a long time without some nudging on your part.
Thank you all for your advice. I have a call into the elder services.. this is my 3rd call to them. I get transferred and left to "leave a message" which as of yet has not been answered or replied to. Hiring someone private pay is out of the question.. there are months I can barely buy groceries.. I have used our savings taking care of him and we are living on his meager SS check of $875.. I have a Doctors appt today for myself for my blood pressure and I will ask her today what she would suggest I do... We are not church members LFL.. If I do not get help in the next few days I will call the social worker at the hospital. I am limited on Nursing homes because of the extent of his wanderings.. I am on the list for both that have a Locking facility and have been since November.
How old are you, if you don't mind telling us? It sounds like you yourself are at high risk due to health, safety, and financial issues. Make sure you let the doctor know this, loud and clear. Let's hope she or her office people can help you with referrals, but if not, try some of the other suggestions posted above. Perhaps calling your local Alzheimers Association would be a way to get "hooked up" with the system. You definitely need some help…some "effective interventions"…sorry for the jargon. You are in crisis, and like most people who post here, have done a fabulous job on your own…I can't believe you've been dealing with this for so long by yourself…and have probably waited longer than you should have to look for some assistance. (Yes, sadly most of us have had similar experiences in terms of friends/family. They tend to fade away. And the lack of sleep sounds all-too-familiar, too.)
I am 53.. The first three years of taking care of him were not to bad.. Stressful yes, but I managed. I was able to work from home and make some money.. Now I cant leave him for a nano second if he is awake. He eats Things he shouldnt, Klennex, paper, lint, TP etc.. If he has to go to the bathroom he will stand up and take "it" out and walk around till he finds a spot to pee.. He has even peed in his dinner plate when I turned my back to get a glass of water.. I take him to the bathroom every hour.. even standing if front of the toilet he will try to turn and pee somewhere else. This disease is so hard to understand. I have tried the clothing that zips up the back but that causes a HUGE anger problem and he usually ends up tearing them. I have had him tested several times for UTI's . . Normally the Issue with wanting to pee every five minutes happens during his "sundowning" in the evenings. . Like he needs something to do.. Yet if you give him something to do or try to keep him occupied he wants no part of it. He is in depends but rarely has soiled them., just everything else in the house.. I clean and sanitise until I am sure the vinegar and pinesol scent will be permanently etched in my nose.. preferabe to urine thou! Last night his jibberish speak was so strange he sounded like he was from another planet.. I did a lot of nodding and agreeing and saying--"Thats Nice"... :) When I finally got him to bed he was up 6 times... Obviously 200MG of Trazadone is not helping much.
CrankyPants, I really have no advice to offer. I haven't been where you are - yet! Just want to let you know your "name" made me smile. Very unique... :)
It sounds like the plan needs to be to get him the care he needs, (i.e. nursing home), without impoverishing you. Are you seeking community spouse Medicaid? The one where he gets the care and you get the money, up to a certain amount. If you are placing him and planning to go to work, tread carefully regarding how much money you can make. Keep us updated--I am getting more worried about you with every post you write.
I am pulling my hair out by the roots. No human being should have to endure this from another - whether they are your spouse or not. Shame, shame on the social service people, the medical people and all levels of government that should have taken immediate action on this.
Try calling the Domestic Violence center in your area. You are enduring the worst possible domestic violence I could imagine.
I do intend to go back to work, at least when I am not "stuck" here. . I managed a retail store until he started wandering and getting lost and causing damage to our home with his "home improvements" when no one was supervising. He was calling me every 5 minutes at work and If I didnt answer he would "go looking" for me. He was reported lost twice. I hired a Companion at that time but his behavior was just to much for them to handle. That was when I tried the adult day center and they also refused for the aggression. I turned in notice at my work and have been with him since.. that was in 2010. I used my savings and retirement to take care of him and also getting the last of the mortgage paid off so I didnt have that hanging over my head. I do qualify for Community Spouse when the time comes. Last night he refused to take his meds.. I tried several times over 45 minutes..I finally crushed them and put them in a cup of pudding but he only ate half and I couldnt coax him into taking another bite.. This morning he took his Namenda just fine and I also got through his shower with a minimal battle. Some days are tolerable. Some I just want to sit down and bawl my eyes out. My Nice tank has run plum out.. all I have left is tolerance and that is running on empty.. Dont get me wrong-- I Love my husband .. I just dont see him very often. He has been replaced by a pod person from another planet and I dont like that guy much.. I know its the disease. He would be mortified to know that he is like this now. I am just at my wits end and running out of steam. Today My son will be coming into town so I can go to my Drs Appt. I am going to get a long overdue haircut when I am done there.. Maybe that will make me feel better.
Well, you are in the right place here with us. So many of the folks here are still fighting in the trenches--or still trying to survive after the death of a spouse. They (like me) can tell similar stories, and I am sure you will get good advice here that you won't hear anywhere else. Most people don't "get it", as you may have noticed.
Thank you all for your support... I did go to the Doctor today.. Mainly for my Blood Pressure RX renewal and check.. While there, the Doctor talked to me for quite awhile about my well being and said I am most definitely experiencing "caregiver syndrome" and fatigue. She prescribed Celexa and I will be going back in for another appt in a month so she can make sure all is going well. She also made a few phone calls to the Dept of Social services and found out that the "assessment" typically happens about 3 months after the approval for medicaid.. I have made it the last 2 months. Now that I have an idea of how much longer I have to wait I am sure I can make it another month.. That not Knowing what was going on was weighing heavy on me for some reason. I can now start preparing myself mentally ( as much as one can) for His assessment and placement.. I really hate this disease and what it has done to our lives. Each and every one of us deserve better!
So sorry this is the most support you got from your doctor. Typical Medical Moron - give you a pill rather than be proactive on removing the cause of your stress. It would have been much more humane and helpful if she would have admitted your husband to the hospital for assessment, if Elizabeth is correct that you could refuse to bring him back home and let them press the system to get him into a facility.
Wishes for strength and your health to hold up while the Morons jack around admitting your husband to a facility where he obviously should be.
As long as Caregivers are willing to tolerate this treatment from medical providers, social workers and government agencies, there will continue to be two lives destroyed by this disease. TOTAL NATIONAL DISGRACE.
Cranky Pants, it seems to me that your doctor's treatment was kind, thorough and helpful. You say she spent a lot of time with you, checked you out and gave you medications for your blood pressure and also for what she perceived as fatigue and caretaker stress. In addition, she made phone calls and got you information that would lessen your stress. And she wants to check up on you in a month. That's all helpful. Your husband will be assessed soon and then the next steps can be taken. Once he is placed, you and your doctor can re-evaluate your own situation. You can make the it through the next month, as you say. Do whatever you can to keep your equilibrium. We're all rooting for you.
HiCrankyPants, Good for your doctor! A lot of doctors would not have made those calls. If your husband has not been assessed and scheduled for placement by your next appointment, I hope she will make another call. I know what you mean about preparing yourself mentally for your husband’s leaving home. I thought I could go through that day alone but when the time came, I asked someone to go with me and that helped enormously. Maybe your son could take a day off from work and go with you when you husband is admitted.
Hi InJail, Unless CrankyPants’ doctor was also her husband’s doctor, I don’t think she would be allowed to admit him to the hospital. However, I completely agree with you about the services available. They differ according to which state, county, and city you live in. I guess this is the price we in the U.S. pay for the system of federalism, in which powers are divided among the national, state, and local governments.
For people with dementia, there is really no system at all - just a hodgepodge of programs. Since this is not likely to change, I think it would be helpful if there were a nationwide informational program, including one-on-one advising, that would explain which options are available to each of us and help us navigate through this chaotic landscape. This would be very costly and Congress would be unlikely to appropriate funds, so I think a private organization would have to do it. As a caregiver, I would rather donate to such a program that to one aimed at finding a cure for Alzheimer’s and similar dementias.
How much help is the Alzheimers Association? I never used them or contacted them, but I've had patients whose families got some good information, support, and advice from them.
Although I live in Canada, I had the same experience as Redbud. The most help I got was from those on this site, and that includes legal problems, too (thanks, Divi and others who'd been through similar circumstances, or just used plain common sense).
elizabeth, In my experience, the Alz. Assn. was of little use. The social worker who I met with gave me good advice but it was very general and not specific to my situation. Later, I realized that since every person's position is so different, that was the best she could do. I had to hire a lawyer and a geriatric care manager and also did days of research on my own. The Alz. Assn. seems to be spread too thin. They sponsor fundraisers for a cure, run local support groups, run basic educational sessions ("What are the warning signs of Alzheimer's?"), sponsor online forums, etc. Frankly, I would not trust the Alz. Assn. as a central resource for caregiver guidance because it already serves too many masters.
I think a big problem is that the reality is different for each person: -- every caregiver's circumstances are different (medical background, skill in dealing with bureaucracy, at home vs. working outside the home, physical fitness, experience in caring for others, amount of help from family members, suitability of dwelling, etc.) -- every person's financial resources are different (rich, poor or in-between, LTC insurance, different sources of income [wages, pension, savings, SS], eligibility for Medicaid, VA benefits, or other state benefits, etc.) -- every state and community's resources are different (local availability of day care centers, LTC facilities, senior centers, etc.)
IMO, this non-system is hodgepodge, piecemeal, disorganized and chaotic. The fact that CrankyPants would have to post her original question (which is not unlike what many of us have posted) in such a matter is disgraceful. Not to mention that many of us are put in the demoralizing position of making numerous unreturned phone calls, being turned away from day care programs, kicked out of LTC facilities, and being forced to go hat-in-hand to various agencies. As CrankyPants said in her "thank you" note, each and every one of us deserves better. Given the political realities in the U.S., I don't think this disordered mess of delivery of services is going to change in the foreseeable future, so the best we can hope for is for someone to come up with a private system to help caregivers navigate it.
Like all organizations, each chapter of the Alzheimer's Association differs in the quality of information and advice it shares. I found my chapter to be sympathetic but basically not helpful when we were in crisis. They did not provide any information that I had already found myself...such as a list of psychiatric hospitals, ALFs. They refused to recommend any physicians and told me to call the local hospital for a list of neurologists and others who treat dementia. Same with elder care lawyers. When I asked how would I know who was good and who wasn't, they told me that I would need to decide after had spoken with and interviewed the doctors/lawyers. We were in crisis and didn't have the time to conduct interviews...my husband had been put in jail for hitting me (I called 911 fearing for my life), he had been taken to a psychiatric hospital but no one would tell me where citing HIPPA regs and the police filed a temporary restraining order on my behalf so I couldn't have contact with him for 72 hours.
The only place I've gotten sound information quickly has been here at Joan's. My chapter of the Alz Asso is useless.
Hmmmm. I was hoping that people who had used the Alzheimer Association had had better luck…but I guess not. The system is ridiculously chaotic, as others have pointed out, with it being very difficult to find someone who knows the whole system…spanning agency borders…and who can pull together a sensible plan for both the short term and the long term. (At least in the U.S. it's like that. I can't speak about Canada.) I can only echo LFL: For me also, the only place I received good information and solid, sensible recommendations in a timely manner was here at Joan's. The health care "system"…yeah, don't make me laugh…is a disgrace.
Vickie, I was being polite. I didn't express my true feelings.
There is some help out there, but it is sporadic and you have to look for it. I feel that over the years there were a few incidents which should have triggered some sort of help.
I did not have any luck with our local Alz assoc. What I did get was a Phone number.. which lead to another phone number and another and another.. After calling 9 different Numbers I ended back to being referred to the very first number I called.. It was just a "circle" of calls and Hours of phone time that got me no where. When I called the Alz Assoc back to let them know this they said.. I'm sorry.. But know that if you ever just need to talk to someone our line is open 24/7. I felt like maybe it was more of a "crisis" line then any actual useful information. It pitiful how there is such a runaround for those that need some real help. If the statistics on the amount of people who have alzheimers are correct surely something else needs to be done to help caregivers navigate and find help. I actually didnt find much help at a local support group either.. It was more like a "meet and greet" and I found most were there to socialize..which I suppose is great if you are not needing answers. I was told yesterday that If it came down to me being hospitalized the state would be forced to help my husband as he obviously cannot function on his own. Well gee... I almost want to go to the hospital...How sad is that? Thank goodness for this site and the wonderful support and advice here..I have found more help through reading posts here then anywhere else.
Is there a social worker at the facility where you have you husband on the waiting list? I got a lot of help from the staff and social worker at the nursing home where my husband was placed after being in the hospital, they essentially got him in without him ever being on waiting list. This is a county owned and operated facitlity with over 100 beds but i think (at least in MI.) that there are social workers in the larger facilities. I tried all kinds of things before that with all the frustrations that you describe. It might be worth a shot.
Circular firing squad with the Alzheimer's spouse in the middle. The only way this will ever improve is when Caregiver spouses refuse to take the beating caring for the Pod People.
I think My Doctor may have made some phone calls on my behalf.. I was called by the state twice this morning and now my Husbands assessment will be Friday Morning.. Gulp..
CrankyPants, as scary as it is, that's progress. There has at least been some action. I have not gone through this myself yet, Dan is going ever so slowly through this "thing". I will probably be caught off guard when the time hits, but I refer to this site a lot & bookmark things for future reference. Everyone's experiences, good & bad, are learning tools for the rest.
We have had no problem with our doctor, seems to be ready & willing to help out when I give the word. I hope that turns out to be true when the time comes! I don't think they are all uncaring (I suppose some are), but they are caught up in this healthcare mess just like the rest of us.
Remember not to do anything to try to make him look "good." Let the assessors see the unvarnished reality. (I don't mean you should neglect him, but don't try and polish him up for the assessors.) Others have given this advice before.
Thank You!! Sound advice. I was told she was coming early to talk to me --8:00am ... and then would assess him the first few hours after he gets up.He usually rises around 8:30 to 9:00 am depending on his wanderings the night before. Thats never a pretty picture.. :) Almost when he seems to be at his worst. ( except for the evening sundowning). ..so maybe that is a good thing.
CrankyPants, There was one member here who cleaned up and dressed her DH for an evaluation and they were turned down because he was doing to well. (Sorry I don't remember who it was). So don't tell him anyone is coming and what they may be coming for. Along with don't dress him or get him ready for the visit. They need to see what you see everyday.
Wishing you the best, keep us posted on how it goes. (((Hugs)))
It took a three day stay in the hospital and THEY discharged him to skilled nursing care. like you, I had talked to all the right people and filled out a million forms and was waiting for over a year. He started becoming delusional, declining in His physical ability and I took him to th ER as a last resort hoping they would admit him, which they did With a lot of "encouragement" from me. It took them sending to skilled care for the next step in his care. We live in Florida so don't know if that priocess only applies here. Good luck.
Cranky pants. I agree with Pavane55. My husband was just like yours last Friday when a friend who is an RN stopped by and persuaded me to bring him to hospital. I spoke with his pcp who agreed and he has bee in the psych unit at our local hospital where he has gotten worse by the day. He will be placed upon his discharge. Save yourself. It could get really bad really fast. Good luck and keep us in the loop xo Christine.
My husband was admitted to hospital 4 months ago and was discharged to a nursing home.The nnursing home beds are given to hospital patients first. The staff at hospital knew I couldn't handle him at home any longer. It really validated me that they recognized that and placement was so much easier from the hospital than it would have been from home!
The Evaluation was yesterday. The go ahead was given to find a Residential Care that specializes in Dementia rather then a nursing home. They gave me a "list" and I have started visiting several that are nearby. The one that I had originally looked into of course had no openings still so I will leave his name on the waiting list just in case he doesnt do well in the place I chose now. He could be placed as soon as next week If I find a place I like. I don't know how well this well go with his behaviors but since they all specialize in Dementia I guess they have seen it all before. The theory the social worker gave me was-- we will try the least restrictive care first and if that does not work we will try something else. Keep your fingers crossed!
Wishing the best for you and your husband, CrankyPants, in this next stage of the dementia journey. I never had to place my husband, because he developed a form of leukemia which progressed quickly and my children and I cared for him at home with Hospice Care.....In many ways this was a blessing. But I just want you to know that You are giving your DH the best care you can give, and will be a constant advocate for him. Bless you!
I also wish you the best of luck finding a place for your husband.
When I was preparing to place my (now 70 yr old) husband, about 20 months ago, I learned from this site to make sure that I had a prescription for anti-anxiety meds for him which I could give him before we left home for the facility. And to MAKE SURE the new facility has the meds ON HAND the day he arrives so that they can give him meds as needed right away. Don't stop checking with the facility until they confirm they have his correct meds on hand at the facility and are ready for his arrival. They have to call your Dr. for the prescription and our Dr. had recently changed his prescription. The facility didn't get that order, so there was a mixup. Don't let this happen, as it will cause your husband unnecessary distress.
My experience was that we went to visit the place a few days before I placed him. I told him that we were going to go have lunch with a friend of mine. All of the staff made a big fuss over him and he enjoyed lunch. On the day of placement, I drove him over there (without telling him beforehand), and when we got out of the car he said "oh, this place. I've been here before." I didn't say much (I was terrified/falling apart inside). When we entered the place the staff, again, made a big fuss over him and walked us to his room.
However, they didn't have his meds on hand, so when I called to make sure he was settling in and had his 4pm meds, they told me that they didn't have any meds for him yet. Because the facility can only give meds that they have purchased directly, I then had to get back in the car with my meds from home and bring them to the facility and give them to him myself. I wanted to make sure that meds were given on his regular schedule to keep him calm and compliant.
Again, good luck. I'll be keeping you in my thoughts.