Yesterday I just lost it. I didn't have anything to give. Actually this week has been a constant nightmare. Yesterday was grocery shopping day. Took his truck because he has such threatening temper tantrums when I mention "selling" it to my brother. I had decided perhaps I shukd sell my mustang. But I hate driving the truck. It is a pain in the ass loading groceries in it. He is counterproductive at every turn. Doesn't know how to put things away and keeps moving things from wherever I put them. At the checkout he takes things off the belt as I put them on. Some tears leak out as I am trying to pay. Sweet checkout gal asks if I am ok. Well so far from ok it is not even funny but I say yes. She comes around the counter to give me a hug. Hb thinks that's really funny. We are at the commissary and tip the people who bag the groceries. He gave him $25 dollars. Fortunately we got the guy who knows us well and he comes aside with me to figure out the tip and helps me calm down. He gives me a hug too, but I think I better tell him not to do that anymore. What if hb decides to beat the shit out of him? At home he keeps getting in my way even though I have told him to go watch tv til I finish this. I have no more patience and glare at him. So he has a temper tantrum and I am once again the asshole. Well, yes,that is me today. Learn to cope. Made his lunch and went upstairs to sew some Christmas presents.
Pretty soon I keep hearing him upstairs but he doesn't come in the sewing room. I finally go to see if he has spread poop all over the house again or what. No idea what he is doing. Going through my closet. Going through his jewelry box. Has on his favorite watch. Battery died about 3 years ago. He can't read it without glasses. But whatever. He wants help figuring out his computer. I say sorry but you don't know how to use it any more. Keeps asking. I try to turn it on but he has unplugged something. I say I don't have time to figure out what's unplugged. Tell him he used to scan pictures, shop on ebay, make music and picture cds, but doesn't know how to do it any more. He says he will figure it out. Good luck buddy. I go back to sewing.
I don't even remember what happened after that. Made hamburgers for dinner. Oh, got pissed cause he kept coming in the kitchen and then fucked around with the burgers. So I just served them up and had another drink. Too many. Put on a football game and decided I coukdnt sit in the room with him and his ice cube chewing any longer. Went up to my safe room and went to sleep.
Unfortunately my girlfriend called. She is the RN with hospice experience. Somehow hb figured out how to answer the phone and figured out how to find me
I think you need more than the day and night off. It sounds like it's time to talk to your doctor, your RN friend, anyone and everyone, to help you get out of this unrelenting mess and stress. If you don't take care of yourself now, you could go under. Respite? Place him? Something to save yourself.
Yeah I know. I looked into respite and I'd have to get him into Depends first. I bought some but then he didn't have a problem for about a week. Even with Depends that won't stop him from playing with the shit and spreading it hither and yon. Went to his doctor and are trying his suggestions. Am going to call another in home care place today.
I can't figure out why I can't separate the alzheimer guy from the little bit of the guy I married that sometimes shows through. I can't seem to forgive the alzheimer guy for the day he cornered me and punched me in the face.and boobs. And when he tells.me he loves me and pats me on the head like a dog I cant seem to take that for what it is instead of just recoiling in horror. It is like a reflex like when the doctor hammers your knee. Really need to get past that. Or place him somewhere. Problem with that is I will be paying cash. He is physically in fine shape. So even though everyone says he won't last 20 more years there is no guarantee how long it might be. I don't have enough momey for 20 years. This is a community property state. So after that there wouldnt be enough to care for me. So stuck between rock.and hard place.
Sorry for cluttering up this board with this bullshit. Shouldn't have said anything. There isn't anything to say.
Does your husband take any mood stabilizing drugs like Zoloft or Celexa or anti-anxiety drugs like Ativan? If not, run it past his physician. Might be worth a try.
Also, in the case of something like the computer, answer generically, "It's broken and I can't seem to fix it. We will take it in next week." When you tell him that he can't do something anymore it probably pushes a button. Much as you want to say it (we've all been there), don't. Keep it simple and vague and impersonal.
I agree with mary75*. You need help. This is probably the worst stage of the disease.
How about your own doctor? He is there to take care of you. A Social worker? Do you have a Deparament of Veteran's Affairs in the USA? Aren't you both veterans? An elder lawyer? As far as money goes, you are going to cost the State more if you end up injured, ill, or mentally damaged. There has to be an answer.
Several folks on this site have had their loved ones in VA homes and it sounded like they got excellent care. mary 75*, that was a good idea, since bhv and husband were in the service.
bhv - I so can identify with you. Must be the time of year making it double bad to try coping. Like you I don't want to copy anymore. I want it to be over - now, not 10 years down the road.
His truck - try disabling it someway he can't fix it. Flatten all the tires. Pull the distributor cap. Same with his computer - if he broke it then don't even try to help him with it.
I also know about the fear of being hit. Having been a victim of physical abuse I am so glad hb is not abusive in the way. If he was, he would be out the door so fast. Being hit is hard to get past even when you are out of it. It is called PTSD which I think they are now call PTSS (syndrome instead of disease).
Even if he smears the poop, leave him in depends. Don't make regular underwear available at all no matter what.
In Washington if you have to use Medicaid they put a lean on the property to be paid when the house is sold. Others here have dealt with how much Medicaid will leave you to live on after placement. Are you retired military?
Have you contacted palliative care through the VA? MY husband is with them is and they pay for his day care. They will also supposedly be there to help when it comes time to place. Also, I am glad he has no desire to have any money in his pocket. He never really has. I am fortunately I can do the grocery shopping while he is at day care. He has gotten to where instead of bagging the groceries he wants to just put them back in the cart. (I shop where I have to bag them myself)
Maybe you need to sell the house now instead of in the future and move closer to where he could at least attend a day care.
Whatever though, remember we are here for you to vent, so vent away.
bhv, You can't keep going on like this. At some point, you are going to crash and he will end up in a nursing home because you can't care for him.
You badly need an aide to keep him busy so you can take a break. On another thread, I think I posed the web page for the VA's Home and Community Based Services. They can connect you with a home care agency and will pay for an aide for a certain number of days. I can only speculate that your own exhaustion is the reason you are glaring at him, telling him you want to get rid of his truck, and reminding him of all the things he can't do now that he used to be able to do. Surely, you know that doing these things just antagonizes him. If you are too tired to manage him, it makes getting help all the more important.
Also, you really need to get his diarrhea under control so you can him into daycare. (The VA will pay for 2 days per week, I think.) I forget if you said in your previous posts whether you had taken him to a doctor for this. My husband had unexplained diarrhea for a couple of months and the gastroenterologist said I could give him as many as 8 Immodium tablets a day. I didn't have to give him near that many and after a couple of weeks the diarrhea went away. Another think that sometimes helps to break the cycle of diarrhea and dehydration is to give him some Pedialite or Gatorade. A nurse gave me that tip a long time ago and it worked.
P.S. bhv, I just went out to do some errands and while I was driving home, I was thinking that it was nice to finally be able to take on some interesting projects around the house. Then I realized that the lack of fun things to look forward to was one of the things I hated most about the Alz experience. It sounds as if your whole life is drudgery, which is true for so many Alz spouses. But your situation is extreme. You really need some R&R. I hope you can figure out to take advantage of some of the VA benefits.
All good thoughts. I have a bunch of info about VA benefits. For now I have too much money. And I have a lawyer who is expert at VA benefits so we will work on that when the time comes. But that is also fine because I can afford to pay for things. The stumbling block has been I just dont know how I want to handle it. There is day care nearby, but I dont see him liking it there. He doesnt think anything is wrong with him. So I had decided to hire in home care. Am thinking of starting with one day a week for something like 5-6 hours. I could take some day trips.
Got ready to call.and then the pooping got terribly worse. I was under the impression that home care wouldn't want to deal with that. But my friend, Cindy, says if they won't, just find another company. So I was going to call another company today. Lost my nerve again. Monday it is on the to do list again. Doctor gave suggestions and it has only been a few days but we only had one poopy incident. Maybe on the right track.again.
Yeah I know all the things I said push his buttons, but I was beyond caring. Surprisingly when he started coming toward me, he.saw the look on my face and he backed down. Now I am not saying anything at all.
I remembered this afternoon something Lindylou told me several months ago. She went through the typical day at assisted living and explained all the roles of all the different people. So last night I chose to be the night security guard. No matter how many times he came down telling me he needed me to come upstairs with him. I just kept saying no. And then slept in my safe room. He was just fine and happy as a clam again this morning. Today I choose to be the weekend substitute cook - not the gourmet chef LOL.
I spent the last three afternoons in my sewing room making mugrugs for Cindy and my niece. They came out soooooo cute!. I don't normally do Christmas presents any more so this is different. I think I will package them up and do Christmas cards.this weekend. Its been a little.easier the last couple days since he has been willing to watch the channer with Gunsmoke, Bonanza, and the Rifleman. So I don't have to keep running down to chang the channels.
I just realized it has been kind of a full moon. I quit tracking that. Besides the holiday season, mayybe the moon did me in again.
Charlotte I had a dream you moved your motor home to my back field. We put the guys in front of the tv and we went out to walk the dog and play with the kitten. Then we played in my sewing room and embroidered curtains for your motor home and my kitchen. We embroidered "I hate alzheimers disease" followed by a lightning bolt in a beautiful italic style font running continuously across the hemline. Alas, we are on septic system so that wouldn't work very well for very long.
In fact, as soon as I finish the Christmas cards I am going to make those curtains for the kitchen. I am sick and tired of the stupid miniblinds.
I question whether your lawyer understands which VA benefits are at issue here. I'm not talking about custodial care in a VA hospital or about aid and attendance. When we used the daycare and home health aide benefits, I was still earning $ from my work (although barely), my husband had his military pension and his SS, and we both had savings. That did not disqualify us: it only meant that we had to pay a copay. (As I remember, it was $15 per day of day care.) Call the VA and ask about this.
Half the women I know predict that their husbands will refuse to go to day care. Mine was a tough sell and I was ready to call it quits, but after about 3 weeks, he gave in and even got to like it. Since the place he went had a contract with the VA, there were more men there than at other places and he made friends with some of them. It saved my life to have hours by myself several days a week. I think Charlotte will tell you the same.
Another thought is to investigate the PACE program. Lindylou used that . I think it allows the community spouse to keep her assets, but I'm not sure.
Sorry to keep harping on this subject. I'll shut up now!
We have the PACE program here but from what I see it is for people who would need nursing home level.care and we are not there yet. I will look for VA.daycare.and home health aide info. I had only heard.about the aid and attendance. Thanks.
I contacted the VA through the Geriatric Evaluation and Management. Hospice and Palliative Care manages the day care. I like that they visit every three months to check the place out and talk with the veteran.
Your idea/dream sounds great! My hb is a social person so gets along with just about anyone.
If you have a wash out for the sewer then no problem. When we parked at my sister's it worked out great. When she did the addition the sewer wash out was right by where we parked so we just put our sewer hose in there. (she was on septic). I do want to go somewhere warm, somewhere different but my hb keeps me from going. Plus, after surgery on my left shoulder I overused my right arm and it is still hurting. X-rays do not indicate a tear but calcium deposit on the top that I guess leads to this pain. the first cortisone shot the end of August did not help. I am waiting until the first of the year to go back. Now that I am on Medicare I have to pay the $186 deductible first.
bhv, I think all the advice regarding military benefits would be good to check out, and may be the way to go.
But also, do not rule out PACE: At least in this neck of the woods, the "skilled nursing facility" ADLs (Activities of Daily Living) are less demanding for the PACE program. And it sounds to me that your husband's ADL level may well make him eligible. According to what I understand from you, he is incontinent, cannot clean himself, cannot provide meals for himself, cannot take his own meds without supervision, and really needs supervision in nearly all areas of his life. And you cannot provide for all his needs without help. If you apply, you can find out if he meets the qualifications and make a judgment from there.
Note to all: I locked myself out of this website for a while so my name, while identifiable as me, is a little different. Computer keeps trying to make me crazy.
bhv - You might be surprised if you had your husband evaluated to see if he was eligible for services. I thought it was way too early when I called the Council on Aging to see if DH qualified for anything. (And I mean a-n-y-thing, because I was very desperate at that point.) To my surprise, he was certified as nursing home eligible.
What is the worst that could happen if you have him evaluated for services? Possibly they will say no. Or they may say that he would qualify in a few more months. But you will then have a very clear idea of what the requirements are (and maybe even what services could be coming your way) and the future won't look so hopeless. There could be some light at the end of the tunnel, instead of this pitch-black-darkness we are all so familiar with.
Well now I am glad I said something after all. Myrtle, I had missed or forgotten about the VA home care. Spent some time on the va website last night and will gather some info today and call on Monday. They are only about 45 minutes away. Gosh Lindylou, when you say it all at once it sounds awful. I never think about it all at once. To look at him he looks just peachy keen. He talks a lot and it takes a second or two to realize that not one word of that makes any sense at all. He s pretty happy now. That is taking me awhile to get used to. I keep feeling like if I don't want to take care of him why would anyone else want to?? I know I would be payng them, but nothing like what I was paid for work that was wayyyyy more fun. After all it is not too difficult to come change the tv channel and preparing food for two is just as easy as for one. So sometimes I just can't figure out why I am so miserable. Feeling better since it has been 3.5 days since poopy mess. Maybe we are on right track.
But I am going to see about home care hopefully once per week and go back to playing golf and do some sightseeing. No idea how to get him to accept someone else being here. Not even sure how I will.accept someone else being here.
yes you never know and we are often surprised how much worse off they are than we think. In the latest evaluation from the VA while visiting day care they checked this off: [X] Is dependent in three or more ADLs. I never really knew if he would be considered dependent in any ADLs or not. Now I know which will make placement easier in the future cause I think they magic number is 3 on ADLs.
Let us know what you find out. Who will you be contacting at the VA?
There is a caregiver support line they said is the place to start. I think the website is www.caregiver.va.gov.
He is a VietNam vet and already qualified for medical care. For awhile he went there for annual checkups cause we had less trouble with paying for blood work. But then a doctor decided he had high blood pressure and ordered meds for him that came in the mail.without Jim's knowledge. I refused to pay for it and they couldn't take it back. Especially since it would have been cheaper to get with Tricare. But , more than that, I was furious that a doctor would order blood pressure meds for a patient who didn't understand what it was or what any of the risks were or how to take the medicine. Apparently Jim just walked out of there in the middle of the appointment and they did no follow up. Didn't occur to them he might have dementia and not understand what they were trying to tell him! This was well before the diagnosis. So we stuck with his regular doctor - who coincidentaly was his flight surgeon when we were active duty. His blood pressure has been fine.
If you go the home care route you can let him think the person is there for you. I talked to our first in home caregiver and asked if it was OK if we told him he she there to help me clean. She said sure and we did clean. The first couple times I didn't go anywhere. Then I'd say I needed to run to the store. In a little while he was used to her being there and he just accepted it. Then I made sure I went somewhere for the 3 hours she was there. The next year I hired another person for a different day of the week. That is what saved my sanity.
To use the VA community and home care benefits, he has to be signed up for VA health benefits but he doesn't have to get his regular health care from the VA. My husband was covered by Medicare and Tricare but not by any VA health services. So when he applied for the VA-paid day care, he had to apply for the VA health benefit. He had to be examined by a VA doctor once a year, who would certify that he needed the service, but that was the only time he needed to see a VA doctor. He continued to see his regular doctors and to be covered by his regular health insurances. This is all a pain in the neck, but once it's in place, you should be all set.
The home health aide benefit that we used provided for a certain number of visits every year, not a certain number of hours. I would have preferred more visits for fewer hours per visit, but it was not negotiable. What you are proposing (a once-a-week visit) would work well with the way the benefit is structured. I told my husband that the aides were "friends" who were coming by to visit and, in fact, their visits were like social events for my husband. They would go out with him and do errands or just do things to entertain him.
Thanks myrtle. Last night I couldn't sleep - que surprise? I took out my VA folder and found that he is in group 6 (VietNam, agent orange). And, much to my surprise, I am also eligible for VA healthcare as a spouse of a group 6 member. I went through the stuff from the VA and from the lawyer presentation at the office on aging and they do not say much about the daycare or home health care. So I am glad you ladies said it might be more to hb liking. Sounds like I will get a geriatric care manager out of the deal. I was meaning to ask how some of you got "your" social worker. So I will call tomorrow and see what I can find out. THANKS ALL
I hope others will come along to fill in about Agent Orange. There was a member here, Coco, who pretty much went through hell with her husband, but if I remember rightly, he qualified for a number of extras from the VA because of AO. I believe other site members told her about the benefits. He ended up in a VA hospital in Hawaii that was mostly men and had good care. By all means keep on this and see what other benefits your husband might be eligible for from the AO exposure.
(I keep editing, knowing that myrtle is looking over my shoulder. LOL It's late - this will have to do)
With Agent Orange my understanding is they can get 100% disability. That is one thing the social worker and I first checked on when looking for help was if he was where he possibly could be exposed. I checked the list of ships that were possible since he was off the coast of Nam and his was not included. If it had been what he is eligible through the VA would be a lot more than now. So yes, go after all you can get.
BHV, all the previous ladies seem to be giving you goog advice. I an so, so sorry for you having to go through your ordeal. As a retired Air Force Viet Nam First Sergeant, my first thought would be to grab your hubby and throw him up aginst a wall for treating a women that way. Stories like yours an Samanthas are horrible. If there is an easy way in this AD ordeal, men have it. Do not get me wrong, none is good. I can just imagine the scene at the commissary. May this VA Aid and Attendance or other provram work for you.
Charlotte, I left a message on Monday afternoon. Trash got picked up that day too. Now it is too windy to fill it again. So far, no fires in my neighborhood. I figured I would wait a bit for a call back and got busy. Reached her today. Very nice. Very helpful. He hasn't been seen since 2012 and they have a new program where they assign a PACT Patient Aligned Care Team that includes a social worker. I found some more good info on the va site concerning geriatrics/long term care, including a caregiver self-assessment to bring to the meeting with a.social.worker. so I need to call another number to get him an appointment with a primary care doctor for an exam and assigned to a PACT module. That's what I need going forward - a care team. Commissary today again. Dreading it, but I did things the way I wanted to. Drove my car. Took time for coffee. Pushed the cart when I wanted to and didn't worry if he was standing there looking into space. Didn't rush. Left the radio offin the car. Have a new purse. Christmas splurge for me ha ha. But he kept picking it up. I am trying to make him fear for his life if he touches my things ha ha. Anyway, got through most of the day relatively calmly.
Well I didn't call the va today. It will have to wait til Monday. I was struggling with what to say and how to tell hb what we were going to the doctor for. Although last time I just said his doctor suggested we see the other guy for a checkup and just took him there like it was the most normal thing in the world. Nothing is normal any more.
Then when I was just about to call he came downstairs all angry. Says he wants to take me up there to see what happened and if he catches the guy who did it he is going to beat the shit out of him. Well I go up there and immediately smell that there is no shit left to beat out of anyone. It is spread all over the bathroom and ground into the study carpet and spread on multiple pieces of clothing. Amazingly he gets in the shower by himself. But if he cleaned anything I don't know. The poop is still all over him. He is becoming used to me washing his butt. Oops I forgot to out on some ointment again. But his skin looks better. I don't understand why we had about 7 days without trouble after seeing his doctor. I learned more foods to avoid. Thought the probiotics were helping,but it is baaaack.
I think it was another thread talking about intestinal and other problems occurring after 3 years on Aricept. We are almost to 3 years. I see conflicting advice about stopping it cold turkey vs tapering off. I was going to try every other day, but now I am just going to stop giving it to him. Makes sense since he had this problem with Namenda. His doctor agreed.
I was also trying to get some info about the carpet Inordered at the end of September. The job is still not done. I am very frustrated. Thought I would hear after Thanksgiving, but no response. So, of course, I left the cell on my desk when I went upstairs to deal with the shit. ( Note, that is not a curse word when it is a literal description.) They had to reorder so the job won't be complete till January. But, that means I shoud be able to put up the Christmas tree. Hb likes that.
Sorry today was a crappy day! When I took my husband off galantamine I took the capsules and emptied half out for a week then stopped them. He did still have some withdrawals for a couple days, then was fine.
Tell him to keep him eligible for VA medical he has to see their doctor once every year and it has been 3 years so he needs to at least show up just in case you ever need them. My husband loves the VA because they are all veterans, something in common to talk about if they want to chat.
Today was good. Met his sister for lunch and she had plenty of time to chat. She is good with him. Her husband joined us for a little but too. Amazingly I got hb to poop before we left. No accidents on the road. Visiting his sister doesn't really count as help with anything important, but he seems to like it and I like talking with someone who speaks english once in awhile.
I got in touch with the VA yesterday. Very nice young man. Have appt on Dec 28. Can you believe so soon? I asked how I get a social worker and he said Just ask for what you.want and they will hook you up.
But now I am struggling with depression. Not sure what I want to ask for, but perhaps a social worker can help me with that. Hb still unaware of problems and gets violent when I suggest that all is not well here. How might he react when we meet with a social worker?.?
If I get in home care, just what will I do with myself? Why do I have to leave my home? Why do I.have to deal with.a.babysitter in my home? When we got married I told him I didn't want to be anyone's Mommy. One of the things I hated when his boys were here for summer was babysitters in my home!
I think I can stay.here first few times and see how things go.and then do some sightseeing locally. My girlfriend Patty has a "Granny Flat" and sewing studio. Her hb is having health problems. Might work for me to go over there and we can play in her sewing studio. Break for both of us but close enough if either hb has difficulty.
Am having difficulty not crying all day. Hb seems to know I am upset,but no.idea why and I can't talk about it. And it is Christmas..... I sent out Christmas cards and told some about the Alzheimer's. Got a nice phone call yesterday. A friend was "devasted"to hear this. This sort of thing is supposed to happen to anonymous others. Right? She was nice and offered to listen whenever... Maybe I shouldn't have said anything. I just can't remember who I told and who not and too tired to try to disti guish any more.
Bhv please remember that getting help in is for you, for you to have some time to rejuvenate. Take the time any time that you can get not easy at first I know and he may fight it but that is just the way it is. You need the break or you will be no good for him or for yourself.
We made the decision in the very beginning to tell the people who we were close with. I don't mean shouting it from the rooftops but most knew something was wrong just not what. Felt lets just deal with it if people disappear so be it but virtually all were there for us and continued to include us and were very supportive. I know noteveryone has had the same experience but I found that including people in what we were dealing with was the right chose for us. I feel for you very tough time.
bhv, I agree with Rona - getting help in is for you - you need respite. Yes, it might be difficult at first- he might not accept a stranger in your home. My husband was not happy with a stranger in our house & even less happy when he found out I was leaving. It took quite a few times before he "kind of" accepted it - he never really liked it too much, but I had to be firm & tell him that worker was coming whether he liked it or not. I needed that outing & was looking forward to it.
What worked for me was telling him that the "visits" were part of the program at The Memory Clinic (at the time he was taking part in a drug trial). He still wasn't too happy, but seemed to "accept" it, especially since I told him I had nothing to do with that. He would not have accepted that had he known I requested it. Then I told him I had a doctor's app't for my menopause & had to keep that app't. He would not have been happy knowing I was just "going out". He had just started not liking staying home alone, so for him staying with a stranger was a bit better than staying home alone & I didn't have to worry about him. Besides, that worker is only a stranger the first time, then it becomes a familiar face every week. I went shopping with friends or went to friends homes, also took line dancing classes. The worker who goes to your home could take him out somewhere, then you could stay home. My worker did that with him. Perhaps you can fabricate a reason for the worker to be at the house - a reason you had nothing to do with of course. As far as seeing the social worker, perhaps you can tell him your doctor set up this app't., then he can't be mad at you - he might mad at the dr,- better than being mad at you.
As far as staying home the first few times the worker goes - I was advised by the director of the Alzheimer Society, that I should not stay, especially the first few times. He needed to know right away I was not staying there - gave him a better chance to get use to the worker & much easier for me leave every time when he knew what to expect. My worker was from the Alzheimer Society & was trained & knew what to do if he was not too accepting of her presence - he certainly wasn't the first....
My husband also knew when I was upset & he was concerned for me. He'd ask me if I was upset because of him. I'd say no & he has relieved he wasn't the cause.....if he'd only knew.....
You're right - we certainly think this only happens to others....people we don't know... could not possibly be us..
Glad to hear you're getting help - you certainly need it
I put up the Christmas tree and some other stuff. He says it is pretty and I did a nice job. It was on my to do list. It's done. Yay. Oh boy, could I be any more sarcastic?
When I had the private pay aide for four hours once a week, I would do all the errands I couldn't have otherwise got out of the house to do--the grocery, bank, post office, etc. If there was any time left I would just go to the library and vegetate. Hospice only gave me an aide for one hour, five days a week. (Yeah, I know--be still my heart.) I would do a super quick dash to do fast errands, or sometimes get a walk. That last five days I didn't leave the house, but would sit on the screened porch and eat a sandwich during that hour while the aide did the bed bath. I never went through the VA for anything (he was a WWII veteran), although it was something I had researched and knew about--but it just worked out that his care went in a different direction.
In case you are interested... I went to the VA today. Beautiful new facility in Redlands, CA. Not too bad a drive. They have a.new Patient Aligned Care Team approach. We now have a team! The doctor assigned to us is so charming. I like her style so much. Wish she could be my doctor. Since it has been 3 years since the diagnosis she ordered blood work and referred us to a.neurologist. She used a SLUMS test, slightly different than the MMSE. She was really good at giving this test! He didn't get upset at all. She scored it a 1.
Our team includes a.Social Worker. He is not bad enough for Home Health Care and the Homemaker in home services program has been frozen for now. But she gave me a list of the places they recommend and contract with. And she said if I do private pay I can choose more services.
The docor will help find a.solution for the diarrhea. I stopped the Aricept a.few weeks ago. Two days ago I stopped the Flomax. He slept through the night the last two nights. That is weird.
He pooped before we left. I stopped at the Commissary for groceries on the way home. Apparently he pooped in hs pants while we were there and didn't tell me. Cleaned him up when we got home. Another episode around 4 pm. Got that cleaned up and he came in the kitchen with poop all over his foot. He is really upset at the guy who keeps putting this stuff in his pants. We had Turkey burgers last night. They haven't been a problem before. So what the heck?? I gave him some Lactaid and two Immodium before dinner. I am afraid to cook. The doctor says there is lactose in bread. I didn't think of that. We can't have any cheese. Now we should eliminate bread???
Glad you got into the VA and found help for now and in the future. As for the lactose, one of my grandson was lactose intolerant. When he visited I had some pills he took before eating that blocked the lactose so it didn't bother him. If lactose is causing some of the problem, might look for them and give him one before every meal - never know where it might be hidden.
Sounds good, bhv. I'm so sorry that the homemaker program has been suspended but glad that you have some help in managing a difficult situation.
I wonder whether this diarrhea has caused your husband to go into a state of incontinence of bowel. Maybe as an experiment, you should buy some pull-ups and see if he would wear them. It sure would make your life easier.
So glad you've found a team, bhv. Do have one question for you? Do they have contracts with day programs or day health centers that might give you a break? It seems he really ought to be eligible for that.
Also, if he scored a 1 on his test, is incontinent daily, needs help getting cleaned up and dressed, what does it take to get him eligible for home health care? Urge you to find out and become the squeaky wheel in only the most polite way to get his (and your) needs melt. Super people we are expected to be, but gee wiz.
bhv, you are one of those "figure it out and do it" people. People on the site who had experience with the VA system suggested you look into their services and you did. Others mentioned drugs that might be causing the diarrhea, so you considered the pros and cons, and stopped them. Sometimes people write wrenching posts about their problems and get thoughtful responses from those here who have dealt with the problem. Often these questioners don't respond, drop out, or give back a "yeah, but" response.
If ever there were a case for the trial and error methodology, it is in dealing with AD. Good advice from lindyloo*: be the squeaky wheel. I agree that there seem to be a lot of ADLs that he needs help with to not qualify him for more services.
And don't beat yourself up over an occasional lack of patience. Your husband is lucky to have you trying to help him.
The social.worker gave me contact info for the day care places. I am not sure if he would qualify for that. I don't think he will accept that right now. They all.have women walking around carrying baby dolls. I hate to think what he would do with that. The social.worker said he would have to be ok with either kind of care and I just don't know about that. Things are very different with him now. I didn't know how he would react with a woman doctor, but he really responded to her in a.very comfortable way. It was nice.
None of them want to deal.with a guy who spreads poop all over the place.
She said he has to require physical.assistance, not just reminding, with 3 of 5. ADLs - dressing, feeding, toileting, bathing, transferring. He doesn't need physical assistance with these except for toileting. So there you have it. And he doesn't believe he needs asssistance with anything. There is some leeway if he is 75 or older. He is 74. Or if he ends up in the hospital several times in a year. Probably not gonna happen unless I lose it and consequently end up in jail LOL.
I took today off in every sense of the word. Didn't help him shave. Didn't turn on the tv. Didn't speak unless absolutely necessary. Took a nap after lunch. He came to "see" me after about an hour, but he left when I just stared at him. Then I put on my combat boots and worked on the hill. Ha ha I thought of you, marche, and nearly brought my new purse and pretty tennis bracelet out there too. Ha ha. Filled the trash can once again. Then cooked supper. After four poopy surprises yesterday we haven't had any today. Good thing for his survival prospects!! I am giving him Lactaid and Immodium with each meal. Perhaps that will break this ridiculous cycle.
My nurse friend Cindy says if one home care agency won't handle the incontinence then call another. Will have to start that process. But, when I was out on the hill I had another freaky thought. The social worker said he would have to be ok with someone coming in. Well what if he seems ok and I leave and the person they send is a little person with no self defense skills and what if he threatens or hurts her?? What's my liability? I have to get out my home insurance policy to check on the rules if I have someone here on a recurring basis. But how on earth to assess my liability if the home care worker is hurt by my husband. I don't think it would be smart to ask my insurance comany that question. Well now I am even more depressed.
Marche, yeah, I can't imagine not responding to the thoughtful responses from the group here. I don't have the words to express how generous I think you all are who have been through this horror story and are on the other side, yet you take the time to help little old me. That brings tears of gratitude to my eyes.
I feel so lost and alone. And I write something at the cottage at the lake asking for a story about the Man in the Moon from Wolf. And the next day there he is at the Christmas lodge, but telling about the Man in the Moon. Wolf, do you know how my heart swelled with gratitude when I saw that? Kind of like when Lindylou was working through something difficult and we didn't hear from her for a day or so. When she came back with a really thoughtful story, Wolf said he was waiting for her.... oh my, be still my heart. I love you all so much. Thank you.
Bvh, Here's a song from the late 19th - early 20th centuries. My grandmother used to sing it.
My sweetheart's the man in the moon. I'm going to marry him soon. It would fill me with bliss Just to give him one kiss But I know that a dozen I never would miss. I'll go up in a great big balloon And see my sweetheart in the moon. Then behind some dark cloud where no one is allowed I'll make love to the man in the moon.