Having read all the info on this site, it finally occurred to me that I needed to at least call hospce,. I had dr appt for me and asked about hospice. He immediately jumped on this and said he would contact one (that was yesterday, thursday(). They called thursday PM and made appt to see me (and spouse)this PM. They came out, RN said he definitely would qualify. (I think he is early stage 6) By 5 o'clock I had a man out here with a wheel chair, bedside commode (which converts to over the commode side rails), walker, oxygen and shower chair. Technically, husband does not need this stuff right this minute, but should it be needed it will be available. I will also be getting (probabloy Monday a box of meds, including haladol, jic), I have a 24 hour contact number. As I go thru this process I will keep posting on this discussion. I felt really good when RN left, like I had a real friend and advocate. She was surprized at what all I knew (which I let her know was attributable to this web site, and she took down the web address and said she would definitely look at it. I will keep everyone posted.
The Queen I am so glad you called. They are one business that doesn't drag their feet. The aide for bathing, changing the bed, etc. is really helpfull. I had her 5 days a week for my Mom.
Well its been 10 days now since we went with hospice. The nurse (my case manager) comes by at least once a week tocheck his vitals and to see if I need anything. The social worker and the chaplain have both been for a visit. I now have a ton of equipment should I need it, with the promise of anything else Ishould need later. Also an "emergency" packet of meds such as halodol and morphine, anti nauseau stuff etc. I feel like I am in good hands. There is a 24 hour a day number if I need assistance. Makes me feel not so stranded. I will keep posting to this as new info comes up
Queen, Since I am new here, I don't know how far along your Dh is, but just wanted to say. My FIL was in hospice and I can't say enough for their kindness, support, understanding. They are a amazing bunch of people. I actually think the process that the family went thru with them during the end of my FIL life truly eased the loss. They were wonderful with my Dh who had just been diagnosed 3 weeks prior to his dad passing from Alzheimer's. They watched my Dh for any signs of him having issues. Their gentleness with my FIL and the family certainly eased my Dh's concerns about his own issues. They were truly a blessing. I wish you the best, I know this time is hard, but hopefully you will have the same experience as we did. Rk
I said I would keep everyone updated on my experiences. I think my husband is stAGE 6. I am not having to deal with incontinence yet and he canstill shuffle around. He is losing weight. Memory is really going rapidly now. Has trouble remembering who are kids are (we have 6 living, one deceased) and the g'children are really a mystery. Very old family friend came to visit this past two weeks and he never did figure out who she was. Speech is very difficult to figure out as he "word salads" a good bit of the time.
However my case manageris here every week right now. Keeps telling me whatever I need to call. So far I am managing, but don't know how much further I can go. Have been shaving him since Xmas, but have now had to take over the showers too. Have to assist with dressing as he often does not know what garment goes where and what to take off, etc etc. Also he peed all over the floor last nite (I discovered it this morning so I have no idea, maybe could not find the bathroom, who knows). I may have to ask for some more assistance soon. I will keep everyone posted. patricia
Patricia, thanks for keeping us posted. Lynn is also in stage 6, but isn't on hospice. His case managers and nurses were very impressed with his speech and his walking considering the stage he is in. I try to think on that, instead of the other things he is so obviously declining in. I thank you for sharing with us, we will all be or have been- where everyone on this board is now. Is what I love so much about Joan's place. Real people, sharing their life experiences.
Bathing Lynn still remains my biggest problem. He absolutely hates it. Throws tantrums much like a child would. Never thought I would have to bribe my 2 shower a day husband to get him to bathe *sigh I am so glad you have help. If it gets to be too much, don't hesitate to ask for more. Best wishes to you ~Nikki
We went thru the no bathing stage, drove me right up a wall. He was a real clothes horse and very careful of his personal hygiene pre AD. Then he got better about the bathing, but "shy". He is now not doing a real good job; wonder if he was even using soap, shampoo. Made up my mind this am that either he let me help, or hospice could handle. He was a complete pussy cat, thank god. But even tho he is down to 119 it is still a hard job for me - I stand 5' and weigh 92#. If I remember right you and your Lynn are May-December in a very serious way. My spouse and I are also May-December, but I guess we are real pikers as there is only 16 years difference, lol patricia PS Whatever would we do without this site, lose our minds too I suspect.
Yes we are may-december in a serious way LOL. I am 41, Lynn is 76, so 35 years between us. We have been together 23 years. No one thought we would make it....... just goes to prove love can truly conquer all. Well almost all, can't beat AD can it, *sigh. Lynn is down to 115, it is so hard to see isn't it? My heart just breaks for you. I am so glad he was easy to handle today. Whew! Lynn has in home care through medicaid, they have offered to send in help to bathe him etc, but I don't feel we are there yet. But, when he is less resistant I won't hesitate to bring them in! Anything to keep them home longer. Take care of yourself ((patricia)) ~Nikki
I have been reading, but not posting. So here goes
It has been a very bad 3 weels/ He went into a big slide. The shadowing got to be non-stop, prior to this if I was in the 4 rooms adjacent to the family room that was OK, it was only if I ventured where he could not see/hear me that he would come looking, but all of a sudden it was a case of I could not turn around without virtually tripping over him. If I sat in the room where he was he was just up and down constantly like the energizer bunny. We tried changes in medication. He is off the aricept and namenda. We took him off the ativan and zeprexia and put him on halodol. He had a bout of constipation, had one evening if he had been a teenage girl I would have called him a drama queen. Up, down, moan groan. Put him back to bed too many times to countl Four hours, 2 tylonal, dose of halodol, milk of magnesia, and something else to settle his stomach I finally had him asleep. Of course the next day I joined the poop patrol, but at least he was not constipated anymore. He has not been real steady on his feet in a long time, but not we had a serious downward turn in his ability. Plus he is shaking (almost like a palsy). Next to go was his appetite. I think tonite was the best I have gotten him to eat and it was not a great deal. He also managed to feed himself tonite Past 3 days I have been feeding him in an attempt to get something in him. I took him off all meds 3 days ago to see if it would help. I am wondering if he might be real sensitive to the halodol. His RN has been on vac this week and altho they (hospice) sent someone out they were not familiar with him. Oh yeah, we also had a UT last week which was treated is antibiotics and the RN thought some of what I was seeing might be caused by that. This week we have also had peeing issues, but today was much better. Again I am wondering if the halodol might be the culprit. I have now asked for someone to bathe him as he has and still is too unsteady for me to attempt it. I know he will raise sand, but he really needs cleaned up. Side note: I had been telling the one dau who lives closest (40 miles) that things were not going well, but her whole reaction was along the lines of out of sight out of mind. Took him to her place yesterday for thanksgiving dinner and she got a reality check, not that I think it will make much difference except one of the other girls is due in here for a quick visit next weekend - for a baby shower for the one here and Istrongly suspect they will try to gang up and bully me again. They want me to move to AL with him - not a prayer ladies (and gentlemen) I am not ready for him to go to NH and I am not under any current circumstances going to AL. OK this turned into half info half vent. Sorry about that, but it really has been a hellish 3 weeks and I am tired and cranky.
Joan - you might want to combine this with the other "hospice" thread as we are getting good info together. The hospice people have been really trying to help.
The Queen, just do a google search for Haldol and you will find plenty of information. Everything I have ever heard was never to give Haldol to a demented patient.
The black box warning is here. Frankly if the drug was working, and the patient is on hospice, I'd ignore the black box warning, but you ought to at least read it.
http://www.rxlist.com/haldol-drug.htm
This is the regular side effects which is what you were thinking about:
Recent studies have shown that neuroleptic (antipsychotic) drugs are associated with a slightly increased risk of death in older adults with dementia. The FDA has labeled the drugs with a "black box" warning about this risk and a reminder that they are not approved to treat dementia symptoms. That does not mean that they CANNOT be used, or even that they should not. It just means that their use should be carefully considered. They are commonly prescribed to treat AD patients for problems such as hallucinations, delusions, aggression, hostility and uncooperativeness, since there really is nothing else that can treat these symptoms, which can make life miserable for the ADLO and for everyone around him/her.
As with any type of med, the exact antipsychotic that will work best can differ from patient to patient. Choices include the newer "atypical" meds such as Abilify, Zyprexa, Seroquel, Risperdal, and Geodon, among others. Sometimes an anticonvulsant/mood stabilizer such as Depakote is prescribed instead, for hostility or aggression.
I have been seeing more and more of a trend toward using the "atypical" meds for long-term treatment rather than Haldol, which is an older, "first generation" antipsychotic. Recent publications say Haldol is now "rarely used in treating the psychosis of AD as first-line therapy." Haldol is best used for acute situations needing immediate control.
It is also important that someone who is experienced in treating psychoses be involved in choosing the medicine to be used, and the appropriate dose. This is one of those times when a neuro or perhaps even a psychiatrist might be better than a PCP.
NOTE, please, that patients with Lewy body dementia are usually very sensitive to antipsychotics and should NOT be given any. And it can sometimes be difficult to distinguish AD from Lewy body.
I know I can always get good info here. I am going to put him back on ativan for the weekend and hospice can give me their input on Monday. Had a really bad nite, he kept getting up and then could not figure out how to get back in bed. Sometimes he would let me help other times he preferred to just stand over me and pull covers off until I would insist he stop. He wandered. Back in and fuss at me some more. Try to get him back in bed. If I succeeded it was only good for an hour and we were up again. I am exhausted!
I feel your pain. Our nights are pretty much the same. I would give a million dollars for one night of solid sleep but I guess that is not to be. I have no advice to give. We just have to hang in there and do the best we can do.
I just have not had the energy to post, but will give it a try tonite. We finally have him sleeping thru the nite again. There have been lots of issues, UTI, meds, falls, etc etc He can no longer eat solids, so is on liquids and baby food, but he can handle a cup or glass to drink (could not do that last week() He is incontinent on and off (and I am now officially on poop patrol). Took us going thru 3 aids before anyone could bath him without a physical fight. I now have a man who is about 6'6 and probably goes 250. Nicest guy in the world and Glenn apparently does not dare try to fight him off (lol). I am now getting some sleep and that is helping. They are trying to find someone for respite so that I can get out and get some necessary chores done, including my own flu shot. I can't say nuff nice things about hospice. The RN's were here everyday for 4 days, including both sat and sun.
Frand - if you read this post, where can I get a copy of the little booklet you mentioned called "gone from my sight"?
I am standing upon the seashore. A ship, at my side, spreads her white sails to the moving breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until, at length, she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then, someone at my side says, "There, she is gone"
Gone where?
Gone from my sight. That is all. She is just as large in mast, hull and spar as she was when she left my side. And, she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me -- not in her. And, just at the moment when someone says, "There, she is gone," there are other eyes watching her coming, and other voices ready to take up the glad shout, "Here she comes!"
And that is dying...
Death comes in its own time, in its own way. Death is as unique as the individual experiencing it.
The past 30 days have beenb terrible. The downhill spiral husband is on is unbelieveable. He is now totally dependent. We are having a terrible time keeping him down and getting him to sleep at nite. Yesterday he stood for 6 straight hours (the 2 previous hours had been a steady chore of me getting him turned around and sat down only to have himimmediately stand up and go back to a piece of furniture to hang on to and then just stand. Nites he is just up prowling and picking at absolutely everything he comes in contact with. I had pad safety pinned down on the bed and he managed to bend the pins to the point they all opened and he had it off and wadded up., In the morning the bed looks like someone fought a war - but he hasnot slept - and of course that means I am not getting much rest either. Feeding him is a problem as he does not seem to realize that I am trying to get food in his mouth. Sometimes I can't get him to even open his mouth. This disease is absoolutely horrible and the next person that tells me aricept would make him better will be personally quartered and boiledd in oil by me. To add insult to injury I had a visit from adult protective services. I wonder what busy body decided I was not doing a good job. Called by hospice case Manager.RN and she came over and talked to this person. I was balistic and still have not settled down. Have nuff to deal with without unwarranted= nonsense., That is exactly what my case worker told her too. I am venting., If anyone can spare me a prayer tonite I need it patricia
We had a 80+ yr old woman in our neighborhood with AD. She was still walking but totally dependent for most of her care. She quit eating and passed away. She had a husband and mentally challenged son at home with her. Now, I ask you, really, don't you think she knew what she was doing?
My husband is rapidly spiralling downward. He will go Monday for 5 days of respite care., I spent all day yesterday making appointments for me for next week - gyn for annual pap, Mammogram (4 months overdue and I am a 2x cancer survivor!!!).eye exam (I have cataracts that will need attending too soon). Don't know how much rest I will get, but at least I won't have these issues on my mind. He can barely walk, eating pureed food, incontinent. But damn I can't get him tosleep 8 hours. I ramble. I hope he makes it thru the holidays.
TheQueen, I hope YOU make it through the holidays! I'm very glad you set up the respite care, and that you're getting all the tests you need, but your plans don't sound terribly stress-free to me. You are going to have some "me time", aren't you?
My gosh. Where are you finding the energy? You have to be going on raw nerves. I do hope you schedule in some 'just for me time.' A massage, a facial, curling up with a cup of hot tea and a magazine....
tests are done. Don;t have results from mamo yet. Cataracts will hold for another six months with new glasses (on order). They switched his admission from "respite" to "general" to give them more time. He was supposed to come home today, but it will be Tuesday at the earliest, if at all. He is in end stage and I don't know how long he will hold ouit. They tell me he is having some heart issues (these are new and probably related to the alz). I know you will keep us in your thoughts and prayers patricia
Queen- It is good you took your husband in for respite. Evidentally he must be adjusting well and is giving you some more ME time. This gives him med changes in an enviroment with Medical assistance. We are thinking of you and hope they can make him comfortable.
Queen, my husband has had huge cataracts for years, now. The neuro who diagnosed him over three years ago was appalled when she did her exam and first saw them, and she bugged me every time I took him in to have him get an operation. He has closed-angle glaucoma, had laser iridotomy for that probably two and a half years ago. The ophthalmologist / surgeon sees him every three months for that. We were just there last week, and she asked how his vision is holding up (since the cataracts obviously haven't gotten any smaller.) I told her that the other day, my husband asked what those "little things on the floor" were. I had trouble finding what he was talking about, but finally located a half-dozen teeny-tiny ants. (We get them inside all the time in San Diego ... they are minuscule.) Plus when he watches CNN, he doesn't watch the picture, he reads the ticker-tape news running across the bottom of the screen. I know he does, because he reads it to me.
She said some people adjust very well to cataracts, and she sees no reason for him to have an operation, as long as he sees as well as he does.
Sunshyne, it sounds like you've got a doctor with some common sense. With dementia patients it makes sense to avoid operations unless they are really affecting quality of life.
We do indeed. She is also very experienced, and very kind, and veeeeeeeery beautiful. My husband is definitely sweet on her! That's another way I know his eyes are still functioning well. <grin>
Sunshyne, i know you have said your DH has had basal cell removed and suffers skin issues. my DH has had ongoing issues too in the past and always made it to the dermatologist several times/yr to have general checkup and things burned off that were suspicious. its been yrs since he has gone now, i am thinking maybe i should take him in but i know it would be hell to just get him to remove his shirt much less all clothing for a checkup. then if something needs biopsied it would cause DH undue stress (me too) and then if it did come back positive then what? continued visits for biopsies/burning? and he picks everything and infects it-i have no clue what i should do. i went to my dermatologist and she said to bring him in for a checkup if i can get him in but i know they will 'find' lots of stuff and will put him thru misery. i am at a loss on what to do at this stage...anyone out there with this issue, and if so how have you decided to handle this???? divvi