we have had a terrible time here. my dh has been getting so much worse and having seizures,constant pacing,not sleeping,which means no sleep for me as well, and falling so much and i just can't get him up by myself,unless he can help me,which is not often. his neuro decided to put him in the hospital to run some tests,try to get his medications on track,and hopefully i could get some rest. well,things don't go as planned. dh was schedueled to go in hospital the next day,ice storm hit and we had no electricity or water. our son came and the roads were clear,so i got him to the hospital okay. thank goodness they had electricity. they tried MRI and then CAT scan. there was no way to sedate him. it just didn't do what it was supposed to do.it was supposed to calm him down and make him relaxed and sleepy to do the tests and it did the opposite. it was terrible. the dr could not believe it. of course there was no way we would do general anesesia. the MRI and CAT scan were not done but was able to do EEG. of course he had no seisures while the test was going so that showed nothing but slowing of the brain. dh is 53 and has EOAD stage 7 and dr now says he has parkinsons also. this has been a terrible experience. i worried about what to do. he was so bad,now much worse. i just can't lift and pull on him,he pulls against me. there is no help for us. hospice transitions says it's to early for them to help,hospice says it's to early for them to help,insurance won't pay for nursing home,respise,or alzheimers center. all money we receive goes out on bills. social worker at the hospital tried to help with anything she could,but there is nothing. we have fell through,not just a crack in the system,but a big hole. if he needed some type of rehab therapy,then the insurance would pay for it,but that is not the case. alzheimer's patients,especially the younger ones,are all but forgotten. HOW IRONIC! the forgetting disease is forgotten,left out in the cold. my dh has worked hard all his life,more than most,as he was begging me to help him the other night,he said,"I've paid my dues,please help me". if anybody has paid his dues in this life it is him,and we can not get any help. i don't know what i am going to do. if it were'nt for my grandchildren,sometimes i think i will just lay down beside him and die too. i know that may sound crazy,but i bet each one of you have probably had that thought cross your mind some time during this endless,dark,relentless,degrading,body snatching,brain robbing,family destroying,heartbreaking,backbreaking,horrorfying journey. our children are helping as much as they can,but they have jobs,homes and children to care for. i feel like i am coming to the end of my limits. the only thing sustaining me is my faith in gods' mercy. jav
{{{{{{ jav }}}}}} I am so sorry. I know there are no magic words that will make it better. I am glad you have your faith because I know for many of us that is what sustains us.
Just know that we are here for you to vent whenever you want to.
jav - What you post sounds very similar to what happened to my DH. I don't know why you wouldn't be able to get help from Hospice. With the Parkinson's my husband also had Lewy Bodies, which I didn't know until the results of the autopsy. I don't know if there is anything else you can do to try to get Hospice. I had just about given up when a home health nurse was willing to advocate for us and we were approved. I just don't understand why they wait so long. I our case my husband only lived one week after the first Hospice nurse arrived. Is it possible for you to request a Hospice evaluation? Do you have any family members who can make calls for you? It just sounds so awful that you are being treated this way.
hospice transitions came to our home an talked to us. dh was not quiet as bad 3weeks ago,even though he was bad,you know how it is,it is like a light switch being turned off,one day they can do something and the next day they can't. it's terrible. transitions said they could not help until he only has 12 months life expectency and hospice will not help until 6 months left.my dh is young,so even though he is and will have a terrible quality of life,as long as he is still breathing,and his dr expects him to live 12 to 24 months,we can't get any help. i am thinking of calling the local tv station ,if i thought it would do any good. i don't want pity for us,we need help. home health care called while we were in the hospital and were supposed to come today,we never heard from them. when they do come,i have to prove our income all goes for bills. and yes this is awful. my neice is a social worker and she works in a nursing home,and she is just beside herself because she can't find any help for us. something has got to be done. i feel we live in a country that should help take care of their own. my dh served as a firefighter for 20 years and this is how we are treated. i am very upset and the more i think about it the more upset i get. there has to be a way to make people stand up and pay attention,after all they could be next. jav
jav, I am so sorry, and I have no ideas to offer other than keep on them about hospice. I can't understand why they haven't stepped in. I would think it's time for them to at least help out. Again that could be because of his age. I so agree with you about the younger ones getting lost in the hole. My Dh is 54 and in stage 5 so we aren't where you are. But I doubt things will change much before we get there. It makes me crazy that they have no idea where to even start with the younger ones. Their just left hanging even more so than older AD patients. Dh's Nero was very concerned because he knows that everyone struggles with the diagnosis, but there are NO services even in place for the younger set much less their caregivers.
As far as the feelings your having, please understand you will survive this journey. I am one of those that feels I am part of my Dh's journey for some unknown reason. And I try to remember I am not given more than I can handle. I guess I just feel I can let this journey take me down as well. But that won't help Dh or anyone else. I just keep plugging away. I know your having a hard day, but I have faith that you will make it thru this, cause obviously your a very strong women just to even get to this point in the journey. Hugs Rk
Ok, this is a do as I say, not as I do, suggestion. Can you possibly get a little time away, just for you? Maybe with a good friend. Even just a day at a park will help you to feel like a small part of life is normal.
jav - I can't understand why hospice won't take your dh either. I think they would in our area. Did you go through your Doctor?? Of course I am from a rural area and hospice may operate differently here. I will be praying for you and your dh.
I am so sorry to read of such difficult circumstances you are dealing with. I am appauled that your husbands situation does not meet hospice criteria yet. I guess I don't understand. I thought hospice helps even prior to that "six month life expectancy" where Alzheimer's/Dementias are concerned. It truly is sad when people "fall through the cracks" or into "deep holes." My thoughts and prayers are with you and your DH.
Oh, I remember hearing this......."Failure to Thrive" seems to be the buzz word to getting hospice involved. Is your DH having nutrition issues? Weight loss? I hear if you can get a health professional to include failure to thrive with at least one or two other criteria such as swallow issues, or non ambulatory, or skin issues, that many a hospice will change their minds. However, I am not sure how it works with a loved one so young, and if Medicare/medicaid has anything to do with this. You can call multiple hospices and request they do their own assessments. Someone might just have the right answer for you.
Are you able to get your husband on SS Disability? I know this takes some time to accomplish but it would open up the both the Medicare and Medicaid avenues to you. Contact the Hospices directly, there are some special rules in place for individuals with AD.
If you haven't aready done so, please call your local or area Alzheimer's Association, they can help with advice and give you access to another social worker who could become your husband's advocate.
Hang in there, you are not traveling this road alone.
jimmy, if her Alzheimer's Ass is anything like the one in my area. It's worthless for people our ages! Sorry to say it, but that's been my experiences. They offer no suggestion, advice, help. They just looked at me like OH MY! Again, another hole for us. Rk
I suppose the expertise of the Alzheimer's Assoc. may vary from locale to locale, it all depends on the committment level of the people who are staffing the chapter. Our local chapter here has been a great help and offers a wide range of help from some very competent people.
You know jimmy, I hope your right on it being a local thing. I suspect not though as I have heard a other comments from caregivers of the younger set. Just as I have said several times Dh's nero told me day one, you won't have many resources if any at all, cause they are not prepared for EOA. Not that they have answers for Alzheimer's at any age, but early onset is such a new thing. I can't imagine how the few first caregivers managed. Honestly! Had to be terrifying! And the even younger ones who have little kids. God Bless them!
Marsh you may be right. I will just have to put my thinking cap on and get to writing a letter. hmmmm, where to start... LOL I guess, just getting them to understand that the look they give us upon meeting us is not very assureing.
jav - hugs to you. There are some excellent suggestions above. One of the things I have found in going through this awful disease is that many of the people you end up dealing with have tunnel vision and can only see and do things one way. My way of battling this is to ask lots and lots of questions where I ask for help in understanding the rules that the other person or organization is working with. Usually once they are in the mode of "helping", it is often easier to find loopholes and gaps that can be used to get what is really needed for my husband.
jav, different hospice organizations have different criteria ... although it sounds as if the person you spoke with doesn't know much.
Is there more than one hospice where you live? Find as many hospice organizations in your area as you can. Call the social worker and/or the discharge planners at the hospitals in your vicinity, and ask them the name(s) and phone number(s) of the hospice(s) they refer to. Also, look in the yellow pages and see if you can find any others.
Then call each hospice yourself. Do NOT speak to the intake coordinator; instead, ask to speak to the RN supervisor. Generally speaking, the RN supervisor will know more than the intake coordinator (unless, of course, the intake coordinator is bluedaze.) Ask him/her whether you have to have a doctor's referral, what assistance they can offer you, and whether or not they can accept your husband as a patient.
Some Hospices are non-profit, some not for profit and others are for profit. The difference is how they can bill for service. Believe me-while they can be wonderful they are not all goody-two-shoes. Bill's Hospice bills Medicare over $4000/month. In addition they put all "emergency" equipment in right away even if it isn't needed. Of source they bill for that, too. If you don't have a payer source it will make a huge difference. That $4000 had nothing to do with what I am paying to the facility.
Another thing, when seeking help. Get them into 'helping' frame of mind, then when they say things like" There is a program for in-home help, he qualifies for, but there's a spouse in the house so he can't have it." Respond with REALITY--picture this spouse balancing on her crutches and braces, holding onto a grab bar while helping him shower. He has in-home help. Just an example of getting them out of their "formula thinking mode" and into being of real help.
jav, you sure did a good job of describing this disease... "this endless, dark, relentless, degrading, body snatching, brain robbing, family destroying, heartbreaking, back breaking, horrifying journey." I think we would all say "amen" to that. I thought Hospice always entered the picture in stage 7. Please keep trying with them.
Oh my, it's just not fair. Grrrrr. I hope some answers come your way. Stage 7.....difficult to understand why hospice won't help. So sorry to hear of your extreme circumstances.
dh does not qualify for ss disability,because he worked for the state of ky. as a firefighter for 20 yrs before he retired. they do not pay into social security they pay into retirement. i checked into that twice,hoping i was wrong and something would go our way. hospice in the state of ky says the have to go by medicares rules and regulations,even though we do not have medicare,it still goes for everyone. dh can still walk,he falls alot,has to be held up and guided alot,but hey why does that matter,he is still ambulatory. i have to crush his meds and give to him in apple sauce,and feed him,but hey why does that matter,he can still swallow. i have to shower him,shave him,change him,clean him up,guide him to the commode and force his knees to bend and push him with all my power on to the commode to use it,as often as we can,but hey,why does that matter,he is young and strong and still ambulatory. i have to keep pushing and pulling on him for 1 to 2 hours at night to try to keep him in bed. as soon as i get him to lay down,he pops right back up, this goes on and on and on,me trying to keep him in bed and pushing,pulling,lifting him as much as i can,until i juts can't do it any more for the night. tonight by the time i started counting it was 15 times, my back and neck are killing me + i am afraid i am going to hurt him,because of the way i have to get him in bed sometimes. i finally gave up tonight and he is on the floor in our bedroom. i put a pillow under his head and covered him up and that is all i can do. he deserves better,but it's the best i can do. one of his eyes is slightly dilated more that the other,he leans to one side most of the time [i think this is possibly a sign of stroke] and complaines of pain,but i don't know what to do. he's not going back to the hospital,that's for sure,unless they can actually do something to help him. he takes sleeping meds,but he fights against everything that is given to him. believe it or not,last night was the best night of sleep he has had in some time,and i am exhausted. home health called today,and said they couldn't help either. dh retirement is $3000 per month,even though it all goes on bills,that doesn't matter,it's what you recieve that they go by. hospices are different from state to state. oh, and he still is eating good,no sores,he can speak,although alot is "word salad". i am just really fed up with how our "well oiled" system runs. GOD,PLEASE HELP US! someone,somewhere,please,please,by the grace of god,i beg,i plead, help! jav
jav-I am so sorry for all you are going through. There really is no reason why your husband can't just sleep on the floor. With a pillow and blanket he should be just fine. Don't wreck your back.
I agree with bluedaze. When my Mom was a patient in rehab they had her in a hospital bed that they could lower to the floor at night and I think that is the best thing to do when you can't keep them in bed. During my Mom's final 3 months, I had to tie her in, pin her clothes, put socks on her hands, put a mesh safety jacket on her (one or more). She was 93 but weighted 85 and had a colostomy and a determination to get out of the bed and remove her colostomy bag. If her bed would have lowered to the floor it would have been a big help to me.
Jav, I wondered about your taking him to the hospice people and let them see for themselves! How outrageous that they won't help you!!! Bluedaze, great advice!
jav - I just posted, but my connection is so bad I was thrown off - darn. Here it goes again - your situation so reminds me of how it was with Hank, except that eventually I did get help. Have you any clergy who you could contact? How about your elected officials - maybe family or friends would contact for you. In the past I have been flabergasted at how contacting them can help since they want our votes. Email the White House! You mentioned notifying the local TV stations - anything, maybe some of your family or friends would try this for you. I wish I was closer - I'd definitely help you out. Take care and love to you...
I agree with frand. Contact your local representatives and your local TV station and newspaper. I'll bet the TV station will do a story, and nothing gets the officials attention like bad publicity. Do whatever it takes.
Jav, just a thought -maybe you've checked into it. Would he qualify for medicaid? There are some good medicaid consultants in the Louisville/Lexington area. If his pension is your only income, I would think he would qualify, but, of course, don't know all your situation. I'm in the Somerset area and if there is anything I can do to help, please let me know.
i am giving an update on dh and help 'NOT'. dh has lost at least 10 lbs since we came home from the hospital. he did weight 160 and was eating everything in sight,but i hadn't weighted him while he was eating so much so i don't know how many lbs over 160 he had gained,but now he is losing weight pretty fast. i weighted him the other day and he weights 150 lbs. that's alot of weight to lose in such a short time. he still eats,but not much. he does drink more water and i have now started giving him insure,i put a scoop of ice cream in it and he likes. thursday was the worse day of my life. he slept in the bedroom floor the night before,because he would not stay in the bed. everytime i put him in the bed,he got right back up,so he got in the floor and fell asleep and i couldn't get him up. i have to just put a pillow under his head and cover him up when he gets down and can't help me get him up. i slept in the recliner in the living room,the next room,and the next morning he was face down in the carpet and was wedged against the closed bedroom door and he had his hand under the door. he sounded like he was smothering and chocking and i couldn't get the door open to get to him and couldn't make him understand to move back. i knew i had to get to him as soon as possible. i finally got the door open enough to squeeze inside. he was pitiful. i was able to get him to the closest chair and he would try to get up and fall. after a couple of times,i just couldn't get him up any more and his balance was so off i knew we would be going through this all day. he struggled and trembled and quivered in the floor most of the day. he thought up was down and he kept trying to stand on his head,his forehead and nose are a mess. i did get him to eat and drink. i did alot of praying and silent crying. he was wet all over from sweat,cold sweat,i swear i thought this is it,he's going to die here right in front of my eyes. i was just horrible. we our son came home from work,he came and we got him to the bathroom,he had not used it all day and he didn't understand and would not use a urinal. i got him washed up and changed and he rested and was able to walk and keep his balance pretty good later on that night. i didn't call the dr. what was he going to do? what good would an abulance do? the hospital does no good,that was a nightmare,so no hospital either. i know i need help,but i don't know where it is going to come from. oh and i talked to hospice transitions again and they said their dr.didn't feel like dh was ready for them yet. i got so upset. i told the lady just to tell the dr to come down and spend a day and night with us and he would change his mind,and she said,'if i had a white horse i would ride it down there to rescue you",and i told her i didn't believe in fairy tales and i had lost faith in our system. i told thanks for her time and hung up. i hope she feels really good. i could not believe she said that to me. i just can't get that out of my mind. here is a woman that works for hospiceand i felt like she was making lite of the situation. i would not have even talked to them again but the hospital called and said that hospice transitions was going to help us now. i knew it was a mix up. god help the ad victims. jav
jav, there's just got to be some help for you somewhere! Hope someone will come along who knows where. Thinking about you and praying for strength for you to get through this.
Jav, if he ever is down and can't get up again, please call 911.....I know of lots of people in your situation who have had to call them when their LO was down. The paramedics got them up with no problem. I am so sorry to hear about how much trouble you are having arranging for help. One suggestion I would have is would hospice come out to evaluate your husband and make their own observation and then report back to your doctor? That is what I did when I figured my husband would qualify.....the hospice I called did send a nurse and she took one look and said that he qualified. It would be worth a try, maybe????
Also, are there more than one hospice organization in your area? If so, call a different one.....
Jav, the next time you can't get him up off the floor by yourself, call the paramedics, and then ask THEM which hospice to call and if they will tell the hospice people what they saw when they came to help you out. The paramedics do triage for the hospitals when they bring a patient in. I think their opinion might count pretty heavily if your husband is real good at hiding how badly he is doing. They will see him at his worse when they come to help you.
Jav, I am so very sorry. Sounds so very sad and challenging what you are having to endure. I don't know what your area is like, but someone told me to call Senior Services, or Agency on Aging to inquire as to whether they had a Respite Fund. I'd been told by someone in a support group that there may be a program that offers 15 hours per month respite for caregivers. I applied, they sent out a social worker..........and at the time DH was way better than he is now. Anyway, to my surprise we were accepted, and the reason I brought it up is it gets you "IN THE DOOR" to the system. Please check in to something in your area.
God Bless. Seems like you are going through such horrible trials and tribulations. My thoughts are with you.
jav - I just can't believe you are going through all of this. Really, can't someone contact your elected officials for you? This is WRONG. Also, the media would love a story like this - maybe you wouldn't, but no one should have to go through what you are. I had a very hard time convincing anyone we needed Hospice, and finally the Home Health nurse was our advocate and the doctor signed off without even coming out - just took the word of the nurse. We all love you and feel for you.
Jav - ditto - all of the above. I will give you a suggestion you might want to try. They have heavy belts at the Home Medical Supply houses and on the Internet that is a great help in helping someone up. I had 2 lengths for my Mom. I keep them handy and they help me get my 180# husband to his feet with his help. You put them around him and it helps with leverage to help him get to his hands and knees and them with the aid of a chair and the belt, to his feet. They use them in NH situations. Other uses are to belt them in a wheelchair and I also used one to restrain my mom in the bed at night. Good luck.
i need to get one of those belts imohr. thanks just in case. when DH has a severe uti and was so out of it he fell out of bed and couldnt get up =i had to let him lay there as well til morning covered with b lankets and pillow. it makes me extremely nervous if i cant get him up. so that belt is something i am going to get soon. ps if you try to get them on their knees and then hold to the seat of the chair that sometimes is easier..if they cooperate!Divvi
Jav, I talked with our State Rep and he and his staff have been great in cutting through some red tape with the VA for me. Try that and also every state has an Agency on Aging, I believe. They are there to help provide you with an eldercare atty, resources and even an advocate. The tele # for Maine is 1-800-427-7411, they may be able to direct you the agency in your state. I hope this helps. Remember to breathe. It is never easy, is it?
thank you all for your prayers and suggestions. dh does not qualify for medicaid,too much money,what a joke,his retirement barely pays all our bills. he was in the floor again this morning,soaking wet with sweat and trembling. he was on his hands and knees so i was able to get him up and to the bathroom ro a clean up and change of clothes. he is sleeping setting on the couch now.drooling. this is just so awful. i am going to borrow my daughters video camera and start doing video of parts of our days and nights,but it seems so humiliating to do such a thing and to bring the media into our private lives for everyone to see,but it seems to be the only way to bring attention to our plight,and others in our shoes who can not get help and have no where to turn. our daughter is really good with dh and she comes to stay with him so i can rest,but she has a life and a young child in school,so this has to be at certain times that she can come. all the books and information i have read say,ther is alot of help out there,excuse me,but,that's alot of BULL! only if you are almost at the poverty level,have an open wound that needs to be dressed, 65yrs of age ,6 to 12 months of life expectency,no matter what the quality of life is,as long as there is longer than 12 months,no help,hospice transitions has been here and talked to us,dh was doing better in jan,when they came,but i do not want that lady to come again,she the one who made the statement to me over the phone that if she had a white horse,she would come and rescue me. they don't get it,it's not just me,i want to give dh the quality of care he deserves and sometimes i can't,because i can't get him up out of the floor,and speaking of that,if i call 911 to help get him up i don't want him taken to the hospital,isn't that what they would want to do? no more hospitals! if dh gets on his face,he can't get up and it really scares me. he tends to do that when he is struggling and worn out. he will lay flat down and can't get his head up,or has forgotten how to turn his head. i am afraid to leave the room he is in when he is in one of his struggling modes.this honorable man desevves so much better,so much...i pray for help some way, some how, i pray that i make the right choices and that my faith will see us through this dark forbodeing journey called alzheimers. jav
jav, they wouldn't take him to the hospital unless you say so. I called 911 once when my Dad fell and I couldn't get him up. They told me I did the right thing and if he didn't need emergency care, they would send the Rescue Squad instead of the paramedics. They got him right up and were very nice. Also asked if we needed them to do anything else. There was no charge from the Rescue Squad. They do take donations and next time they came around, I was glad to give. I don't know if they have something like this everywhere but if they do, it's a Godsend.
jav, hang in there. We all do the best we can, and that is all we can do. A lot of us are in the crack too, and empathize with you. I hope you get help soon!!