My dh is convinced we do not live in this house. He keeps asking when we are going "home". Last night he did not want to sleep here and kept asking where we were going. It is really getting to me. I finally called my son - the one who is so thoughtful - and he told his dad that we could stay here. Dh cannot find his bathroom without help. At least he still knows to go to one. He wears depends at night and this morning he told me he wasn't wearing plastic shorts today. He is roaming all day now and I don't know what to do with him. I know this is a stage and "this too will pass" only on to something worse. I'm really blue these days as the woman I thought would come twice a week is not coming back. She was here two days and then said her father was having surgery and she couldn't come the next week. I've left a message on her cell phone asking about her father and she has not returned the call. She came highly recommended but I guess she was not ready for someone with az. I thought she knew about him but I guess not. So I have no one again. I took him to day care and it was not going to be satisfactory. There were two kind women there taking care of three or four women. I left him sitting at a table in a metal folding chair and three hours later when I came back he was still in the same chair. He complained about his back hurting and I can see why it would. So that won't work out either. I have papers to fill out for VA help but I can't seem to find free time to get to that. Maybe should do that after midnight when I can't sleep. I was referred to a law firm that would speed things up for me with the VA the asking price = $700. Well, I could hire help for a long time for that price. So that's out. Just rambling on this Sat. p.m. no one in this house to talk to that makes any sense. Thanks for this place. I need help.
flo, we are all here to help you through this difficult and emotional time. The papers for the VA are important (I know you know that) and you need to make them a priority. I have no experience with the Va but it seems to me you should be able to contact the social worker assigned to your dh's case and ask for help. I believe there's a time for hiring legal help but if you haven't already filled out the paperwork, perhaps you should contact the VA social worker and see how that goes before hiring an attorney. Others with this experience will give you avice that I cannot.
I don't recall how you got the in-home assistance, but I can tell you, dh's LTC policy requires that we go through a certified home health agency and get a certified home health aide. Even though the agency has provided half a dozen aides supposedly certified with handling dementia patients, none of them knew how to deal with dh, so it's not unusual they don't have the skills.
I am willing to help you straighten things out or do research for you to make this phase easier for you. You seem overwhelmed and in need of assistance during this phase. I will send Joan my email address and ask her to send it to you so we can connect and perhaps I can help.
If all you need is to vent and blow off steam, okay. Your posts recently indicate that you are having difficulty finding resources and getting help. I will try to help you if you want but if not just say you're venting and need time to regroup.
Flo, DH does the same. Thinks we don't live here - he says this is his parents' house - and when are we leaving. He never asks to go home, though. Asks how long it will take us to get "where we're going". This has bee going on for about a month now. And, it's off and on throughout the day until he finally settles down to sleep. He did ask tonight when we were still downstairs, if this house had a bed in it. (bedrooms all upstairs). Lorazapam settles him down some - but not entirely. He's in bed now but just asked me if the car - that he says is not ours- has windows in it. My mind is tired.
So sorry you lost your help. I take DH to Alz. Center 2-3 days a week just in the mornings. Won't work for him in the afternoons - sundowning too bad. That does help me some - although not nearly enough!
Flo: I have had some experience with the VA and was able to get help through them. First you need to do a search through google and find out who the VSO (Veteran Service Officer) is in your area. These trained workers are all over the country and are ready, trained and able to set you in the right direction. They will also help you fill out the necessary paper work. I am working with one now to get the financial aid I will get now that my dh has passed on. Or, if you have a VFW in or near your area call them and ask them for help and/or the necessary phone numbers to contact the VA. Most of this info can be obtain very easily by searching on the net.
While doing that find out where your major VA facility is and there are several of those in most of the states. You need to call them as ask to speak to a social worker. Do you take your dh to a VA doctor...if so, just call their office and ask for the phone number for the VA social worker. You need to be firm and tell them you can't continue like this.
Also, who is your dh's doctor?? You need to contact him and probably get your dh on some Ativan or some medication to calm him down so you can get some rest. Ativan is a drug that will get him off the kick about the house because it probably will make him sleeply and it is to calm down them down. I could have not done without this drug for my dh....few people can do the necessary caregiving without the proper drugs.
Please don't resist the help that is available or the drugs to help ease the situation. Keep in contact with us and if you can't get the help you need....e-mail me and I will do some research for you....but, I need to know where you live etc.
One more thing flo and I don't mean to offend you at all....I only want to help you if I can. If you don't want to give your dh more drugs...maybe you might want to think about him in the "world" he is in...He surely is very confused and this must be terrible for him. It seems to be terrible for you and you are not the sick person... just try and think about him and how he probably doesn't like being confused like he is....wouldn't you want someone to help you if you were in those shoes??
PS: Don't pay money for an attorney to help you with the VA if you don't have to...the VSO people are trained to help people like us that don't know the ropes and they probably know more about filing claims then an attorney knows.
Thanks to all. LFL I did get your e-mail and thanks so much as soon as I can I'll answer you. I have re-read my post and what a whiney gal I come off as. I'm sound of mind (mostly) but my love isn't and he is the one who needs sympathy. Our son came today so I could go to church. I read a scripture I think from Isaiah which I will paraphrase - "Help me find pasture even on a barren hillside". So that's my thought for today. Thanks again and again.
Glad you got the email. I'm happy to help in any way I can, even if it's just listening. I'll leave it to you to decide if/when you need my help. Glad you had time for church today.
JudithKB - thanks for all your info. I'll call the VA social worker tomorrow. Dh does go to an AF doctor at the small AF base near where we live. The VA hospital is about 40 miles he gets his meds by mail from them. I'm going to make yet another apt. with our pcp about the meds. He is very good to council with me even though he is an internist he seems knowledgeable about the psych meds. I just have to get myself together but I know others here at Joan's know how at times it seems the sky is falling. I was just so hopeful when this woman came and I'm really disappointed that she didn't have the courtesy to return my call and say she couldn't handle the job. I've looked into an agency but the price is just more than I think we can handle just so I can have a day away. I know we will need the funds later when he is worse. thanks again.
Just wanted to add that the aide I had called today and gave reasons she had not contacted me in two weeks. Death in family and her father diagnosed with bladder cancer. She asked to come back this week after the funeral. I'm happy to have her come back and will just have to forget her not getting in touch with me sooner. Dh seems to like her and it gives me some time away. Since she does not come through an agency her price is about 1/2 what I'd pay otherwise. Thanks again to all. It does help to get input from other caregivers.
Glad things worked out for you. Just a suggestion, but you might want to also check to see what the VA has to offer you. Maybe you could get even more help through the VA and that would help you and at least you would know what is available. Later when you might need special things for your dh like a walker, grab bars for the shower and toliet areas, etc. the VA supplies those for free if you qualify.
Dh was admitted to the hospital today with pneumonia. He is too weak to stand. We spent a terrible night with EMTs coming to get him back in bed after he tried to get up and only got in the floor. They put him back in bed and he was out again before they got out of the drive. It was impossible for me to get him in bed he was raging and I couldn't do anything with or for him. He ended up sleeping on the floor. When morning finally came I called 911 again and this time took him to the ER. They did a lot of tests and determined pneumonia and he was admitted after about 6 hours in ER. One of our sons is with him now so I could come home and feed the pets and eat. Our older son will stay the night as dh will not stay in bed and needs someone there I have to get some sleep. I'm going back now to insist the nurse get in touch with our pcp and get something to calm him down. Always an adventure it seems.
So sorry for all you're going through, flo39. Something about being in the hospital seems to get them really wired. Hope the pneumonia can be treated successfully and you can get him back home soon.