Welcome Duane, we are glad to have you with us, not glad for the reason you are here but still glad we can offer our help for you and yours for us.
To those of you who are wondering about VA nursing home. To be eligible for care in the VA nursing home you first must be enrolled in VA care, second the folks who are placed due to a service connected condition or are 70% service connected disabled are first on the list, the next folks who are eligible are picked by resource and space. So don't count on the VA nursing home totally, it is hard to get into.
Pat JB, If you go here you might find what you need to know. http://tricare.mil/mybenefit/sitemap.jsp My DH was on Tricare for Life before me but we paid monthly for me to have Tricare. I forget what the level was called because they had different payments for different levels. If you already know all this I apologize.
Jane is right about the VA NH qualifications. My DH retired from the Army in 1975 and never went to claim a disability. Well I went and put in to see if we could get at least 10%, I knew that was possible since he busted his ankle on a jump and it is amounted on screws. To make the story short, He got the 10% and I imidiatley enrolled him into the VA system. After he was seen by a VA doctor I ask if we would qualify for respite care. I filled out some paperwork and I have someone come to the house for 4 hours a week. This is better than nothing. I would have to place him on a waithing list for a NH, which I will not do, since the nearest one is 3 hrs drive from here.
Just to add to jane and jean’s comments…you can find all this information on the VA website http://www1.va.gov/health/index.asp If you don't see what you are looking for, you can also use the search option. Medicare also has tools on their site that helps you pick what medigap/drug plans would work best for you.
The best thing I ever did and would recommend to anyone involved in the VA- is to call the toll free number , they in turn will hook you up with your local State Veterans’ Council - who will help you through the process and even help fill out all the paperwork! They have been wonderful to us. They are also wonderful about answering any questions you may have. Hope this helps, Nikki
PatB--It looks like Jean21 has answered your questions. I also went to the Tricare website and found that there are tricare plans that can be purchased and was wondering if you have checked into that. I was also wondering why your DH would have to wait two years after getting Medicare to be eligible for TFL. Maybe I was reading it wrong.
Admin-- Due to my earlier trolling I have already pulled and printed out the "understanding the Dementia Experience". I also printed out extras for family members. What an eye opener. AND THANK YOU FOR THIS SITE..
Being in Oregon, you all get up too early for me. Duane
Duane, My DH is a "grey area retiree". He served his 20 years in the reserves, but isn't eligible for retirement benefits (income, Tricare) until age 60, so he get Medicare (because of Soc Sec Disability status) before he is eligible for Tricare. Thanks for the responses.
PatB--I finally found it where your DH is not eligible until age 60. It is beyond me why one entity of the US Govt can put you on Medicare 7 years prior to normal retirement but another entity of the same Govt cannot do the same for Tricare. UNBELIEVABLE!!! He earned it he should be able to draw on it...
Nikki - Yeh the other nite you were posting after midnight here and you were posting again when I got up the next morning. Don't let exhaustion get you down!!
PatB Just thinking that maybe you should write your Congressman. Your Senators also. H--- Write em all!!
Short Story--When we were trying to get my DW on disability, DW was talking to one of the workers on the phone she got a little snippity with DW concerning scams and whotnot. I got on the phone and got her name and promptly sent a letter to my two Senators and my Congressman. I got a letter back from all of them and shortly after that was informed that she qaulified for SSD. I don't know if it helped her qualify or not but I do know they read my letter.
Duane, good for you! More people need to express themselves as you do. My dad was the same way, and I learned from him. I recently had to call the VA commissioner when I felt Lynn wasn't getting the care he should. Amazing isn't it? How fast the action is when you contact the "right" people.
I thought that was funny .... " Nikki - Yeh the other nite you were posting after midnight here and you were posting again when I got up the next morning. Don't let exhaustion get you down!!" Are you trying to tell me I talk too much??? LOL *wink
Nikki -- Of course I'm not saying you talk too much. I really enjoy talking to you. I just don't want you to fall over because of sleep deprivation. Then who wud I talk to? (grin)
I know that people joke about it all the time. You know, the "call your congressman if you don't like it" bit. I have seen it work a couple of time. In this case the law might have to be changed and a little tough to pull off but then again, a letter here and there would at least make the law makers aware of what the hell is going on. I had never really thought about it previous to this. I can understand that on a normal retirement from Reserves, you should have to wait until year 60 but my gosh, He did his time and now he is on disability. Doesn't make much sense to me.
PatB -- You and Nikki have already done a pretty good job on that one.
Duane, LOL I appreciate your concern and your humor. Cracked me up (grin)
No, sometimes the laws do NOT make sense. Of course we are dealing with the gov, so that may go hand in hand lol I think the people that joke about it, are the ones who have never had difficulties in their life. I know I take my "job" as a citizen very seriously. And my job as a care giver even more so.
If I may, I would like to share a little story…. My little niece who now lives with me, (with her mom and brother) has type 1/ juvenile diabetes. She is a real trooper about it! Since she was 5 she has had to have at least 7 shots a day and her finger pricked for glucose checks at least every two hours. She decided on her own, at 5 mind you, that she wanted to sell her toys to raise money for research. She then wanted to do all the fund raisers, walks etc. She then wanted to write her senator and congressmen
At age 7, they invited her to speak at the Capitol!! When asked how she manages to live with her disability, be so strong , hold a positive attitude and fight to find a cure…. She said my auntie Nikki taught me that a disability can be a gift. She has been disabled since before I was born, but you would never know it, she never feels sorry for herself. God chose me to make a difference, I can’t let Him down. I wont deny I cried with pride. One person can make a difference.
Mary-- As a matter of fact I had a really long answer to you from your first post to me and due to getting timed out I was trying the paste and cut method. It was working on my other posts but I guess this particular post was so long that I still got timed out. I have learned that whenever I post now I re-sign in just to make sure that it doesn't get lost. Now I have to go back and do it again. I didn't do that at the time because I was so pooped from the original post that got lost. Is all this clear to you?? I don't know if it makes sense to not.
Nikki -- That's a really cute story. It makes you think about what courage is all about. If you want to know what courage is, look to the little people. A story like that can bring a tear to my eye also.
I just type as fast as I can here, then try to proof it if I think I have time. If I don't, then I proof it after I hit the "add your comments" button, and then I can hit the "edit" word above my post if I need to correct anything.
We have some absolutely great people here! I've learned so much since my husband was diagnosed February 2007. I knew he had it a year earlier, but it took me a year to convince his doctor to test him and confirm what I knew! My DH was great at pretending to be normal! However, he has gone downhill rapidly. The Razadyne and Namenda aren't slowing his descent very much, if at all. So I came here and met this wonderful group who welcomed me with open arms.
Mary-- I was a radio operator in the Navy and for 23 years did all my work on typewriters and teletype machines so my typing pretty good. The problem was that on communication typewrites are all capitols. No lower case and teletype machines was different also. Anyway typing on a laptop with smaller keyboards and upper and lower case is sometimes quite challenging to me. I think at times it has to do with my mental dexterity also. You might have said previously, but if you did, it has slipped my mind. How old is your DH? I am trying to get it straight about the age and how fast the mind deteriates. I understand the younger you are the faster it works.
Mary-- I haven't found out anything about in-home care yet but hope to get some kind of information this Wednesday evening. There is a support group avail on the 4 Wed of each month so I thought that I would attend this week and see if they have any information available. Have you had a chance to get someone to come in on the afternoons for you. I also understand that it has to someone that they really like. If they don't like the person It can create a lot of problems. I also have a daughter, by my first marriage, that lives up in Ontario Canada. I would like to get a couple of weeks off this summer to see her. She has a daughter that was in a very horrific auto accident 4 years ago and wound up with brain damage. I went up to Winnipeg two years ago to see her while she was in the hospital and would like to make the trip again this summer. Anyway, I am going to have to figure out how to arrange some in-home care for that period of time. I hope that my rambling doesn't bother you. DW is in the kitchen right now moving plates from cupboard to cupboard. She has a plate of brownies on the counter that she laid out and poured Hershy's chocolate over them. That wasn't too bad but when I looked a little closer there was also pieces of roast beef that was left over from supper last nite. So now we have brownies and roast beef covered with chocolate. Yummie. I will let her do what she feels that she has to do and then tonight when she goes to sleep I'll go out and clean up the kitchen and try to put things where they belong again. Normally, it's the other way around isn't it? Hope we don't get kicked off the forum for not keeping to the point and taking up everyone's time with things that are not pertinent to the forum. I should say that I hope I don’t get kicked off Duane
Watch out Duane-I'm really the web site police in disguise. Another option while you are away might be respite care in a dementia facility. They are usually reasonably priced in the hope that you will consider them later on. By the way-what's wrong with chocolate on roast beef-two of my favorite things.
bluedze-- I had a little book that had information on different facilities in the area and while I was going though it I did come across a couple of dementia facilities that I was thinking about checking out. Unfortionately, the book disappeared. I wonder...but yes thanks for that. Now I know that I will give them a call. The roast beef? I guess I should have tried them. I just told her that I wasn't hungary at the moment. Duane
I think that book I am looking for is with my Grandson's books that DW is alway pulling out and looking at. The thing is she is always moving them around. Duane
LOL, you do make me smile. If you look through all the topics you will see there are a lot of threads not related to AD, but we all deal with AD, so sharing our lives, is talking about AD... how is that for a positive spin (grin)
I am very sorry to hear about your granddaughter’s accident - if you don’t mind my asking, how is she doing these days? My brother who lives in FL, his daughter was born extremely premature, 20 weeks… weighed 1 pound 2 ounces..she does have some learning disabilities and will never progress above the 6th grade level but what an angel that child is!
I too am just in the beginning stages of looking for some help with Lynn. Due to his rages and aggression I was too worried to bring anyone in. In all honesty, I was afraid I would be told I couldn’t handle him, and some state agency would get involved and try to remove him. Maybe that wouldn’t have happened, but.. Not a risk I was willing to take.
Let us know what you find out. I know when I had my first TIA in March 07, I checked myself out of the hospital as I couldn’t leave Lynn home alone. Wouldn’t you know, the hospital contacted social services. It wasn’t a bad thing though. They were very helpful in fact. It DID show me the importance of having an emergency plan in place! Sometimes, I need to learn things the hard way lol
In my area, no facility would take him in for such a short time, or for respite care. But in home nursing care is a good option. I now have an emergency plan with an in home nursing program that offers 24 hours care as well as respite care. I haven’t yet tried it but, since he has been on the Seroquel he is much easier to care for.. So one of these days I might just take a break. Best of luck, I hope your meeting goes well on Wed :) Nikki
Nikki- That was a good spin on things. You should be in politics. If and when you decide to get involved I hope you pick the RIGHT side But I will not recommend one party over another.
My Granddaughter, Tiffany, is doing rather well now. She was in the hospital in Winnipeg for over two years for rehabilitation and when I was there she couldn't talk at all. She could make sounds but that was about it. She was 16 when the accident happened, just graduating from high school. Only about two weeks left. She is at home now and I talked to her on the phone around Christmas time. She is still in a wheel chair but getting around pretty good.
I don't know how you women put up with the rages. I can sit here and reason that the AD is not who they were just a few short months or years ago, and that love conquers all, but rage is rage and violence can easily follow. I do see, though, that on the forum everyone advocates personal safety. You have to consider personal safety above all!
You probably should take a break if you can. It might keep you from falling over from sleep deprivation.
I have to say I literally did laugh out loud at your unbiased political preference. I pray I don’t have what it takes to be in politics ….eeeek But, if I ever did, I assure you I would pick the RIGHT side LOL
I am so glad to hear your Tiffany is doing so much better. Kids are amazing! Unlike adults, they seem to take what happens to them in stride and their positive attitudes leave me in awe! I do hope her progress continues. I will add her to my prayers. ~Nikki
Duane, my husband is 69. He first showed symptoms at 65, but I didn't recognize them as anything but normal forgetfulness and him starting to be impatient. He had always had so much patience and had a very laid back personality; made friends easily and children and dogs came to him. He could quiet anyone's child by just holding them. He became angry and lost his temper - something he had not done in 45 years. And then quirky behavior started: buying chocolate covered doughnuts and hiding them; buying a can of cashews and eating them in one sitting, etc. The changes in his personality progressed, as did his forgetfulness and he developed obsessive compulsive behavior: stacking the forks, spoons, lining up the knives; straightening throw pillows; picking up lint on the carpet, etc. He developed a shaking in his hands that comes and goes. What drove me to take him to the doctors for his "annual physical" was that he started sleeping in the normal position, but would turn so that his head was at the foot of the bed in his sleep, and his feet would kick me every minute or two. I got to where I would time them! Of course he was sound asleep, and when I would wake him up and ask him to turn over, he didn't know what had happened. That was when his doctor tested him for sleep apnea, and discovered that he not only had sleep apnea, but restless leg syndrome as well. It took a year from that point to get the testing for AD and it was confirmed when he was 67.
I have found a in-house care group that is two blocks from my house. They have a form for you to fill out to try to match his personality and likes to the caregivers, so they will send someone who will come close (hopefully) to your spouse's personality. They will send a different one if the first, second, third don't work out until they get it right, but she said that most of the time, due to the form, they get it right the first time. I'll let you know how it goes.
As to chocolate syrup on brownies, add vanilla ice cream and I'll eat it! I will, however, remove the roast beef! <grin>
I'm so sorry about your granddaughter, and for it to occur at 16! Wow! Such an important stage of life. I hope you are able to visit them soon. I hope you are able to find someone to stay with your DW who will be a good companion to her. Sometimes they become friends with the companion and you don't have to feel guity when leaving them. I hope that will be the case for both of us!
By the way Nikki and Duane, I've already booked the cruise for myself - and my husband and grown daughter. She will watch him while I'm in the meetings and we'll take turns staying with him while we relax and visit with others. We're looking forward to it! I realize that some can bring their spouses and they can still stay alone, and others prefer not to bring their spouses and have a complete respite. It is less expensive for me to do it the way I've planned it. <grin> I hope most of this group can come! I'm looking forward to meeting everyone in person!
Nikki--Sorry for taking so long for the reply here. You probably noticed that I was having trouble with my computer. (grin) Thank you both, Mary also, for your concern for Tiff. Actually I have only seen her one time and that was when I drove up to Winnipeg when she was in the hospital. I have only seen my daughter 3 times in her lifetime. That’s another story. I also read you posting on the other thread and I am so sorry that you have to go through that kind of an ordeal. I hope that it doesn't upset you when I say that I just can't understand why you put yourself through all that. I understand the love you have for you DH but at this point he just isn't the same person you fell in love with. Enough said from me. We have been coping here for 3 years now and DW has never shown a hint of a rage. Since I have never been effected by rage I probably shouldn't even be making comments. I see Mary has already made arrangements for the 'caretaker cruise'. Maybe you should also. It would probably do you a world of good. IMHO.
Mary--I certainly understand about the compulsive behavior. DW would walk around with a roll of those white kitchen garbage bags tucked under her arm and everything she comes across she would put into a bag, neatly tie it shut and park it someplace. On one of her wanderings down the block she had a hand full of silverware. She sits out silverware for the company in the front room, that isn't here. She keeps putting cloths from one closet to the next. She will probably move the same cloths several times a day. What I would get upset with is when she would clean out a drawer of socks or underwear and pack them up someplace for when we went home. I would get ready to take a shower and couldn't find anything to wear. There I am, running around looking for something to put on. Disconcerting! Is that when you grin and bear it? I will have to start looking for some kind of respite care. I am looking forward to that trip to Canada, if I can make it. If not, I will have to get some kind of down time.
Hooray for you on that cruise. Try to get Nikki to go with you also. Duane
My Duane! look at you! from 'lurker' to bell of the ball, all in one day:) 77 hits to your first post...i should say you already have a fanclub! good for you, glad youre out of the closet,ha! Divvi
Duane, do you go through the white garbage bags and put things back where they belong? I guess you must, or you would be buying new undies a lot! <grin>
Sunshyne, good one!
Divvi - "out of the closet" - this group has a great sense of humor!
Duane, “ I hope that it doesn't upset you when I say that I just can't understand why you put yourself through all that.” It doesn’t upset me at all Duane, the ironic thing, is if “in his own mind” Lynn would be saying the exact same thing to me.
I guess the reason I put up with it is because I have seen first hand what a nursing home can do to some people. Now I am not saying that it is not a wonderful option for many other people. I place no judgment, I ask the same. We all know our loved ones intimately and know what is best for them. I know a nursing home would kill Lynn. If not in body, in his soul.
Plain and simple, he was not ready for nursing home care. He is aware enough that he would hate it, and frankly I am too much a coward. By that I mean, I know I could not handle it when he begged to come home. Later if he reaches the stage where he doesn’t know, is disconnected …and I can’t handle his care, then would be the only time I would consider a home. I know his heart, I know mine, it wasn’t an option.
“ I understand the love you have for you DH but at this point he just isn't the same person you fell in love with.” You are sadly correct. He hasn’t been for a very long time. One loses their spouse inch by inch , I have grieved each aspect of our love, our lives that we have lost to Alzheimer’s. He is now but a shadow of the man I married, in truth I lost “my Lynn” years ago. I am no longer a wife, I am a care giver. For now I can only care for him, love him in a different, yet just as strong.. And pray God takes him before end stage ravages his body as severely as it has his poor mind.
I couldn’t help but smile as I was reading about some of your DW antics, the love and patience you have shines through in your posts. I hope you do get to take your trip to Canada, and I will keep thinking about that cruise lol. Do try to get some you time, respite - and take care of yourself ~ Nikki
Divvi-- Thanks Divvi but it all has to do with the people that are already posting here. I didn't realize that so many nice people could be congregated in one place. As far as coming out of the closet, I have to thank the ones that pulled me out of the closet. I owe them a big debt of gratitude. And beside, I like talking to everyone. The only downside is the reason that we are here in the first place. Posting here has taken a little bit of the edge off and I really think that I needed that. The Doc was reluctant to put me on meds the last time we talked so here I am. Duane
Mary--DW will usually just sit them down someplace and walk away. After a few minutes or a couple of hours she will come back, open them up, and resort what she has already put in them. If she keeps doing that, then I am pretty safe. It's when she starts putting things in the suitcases getting ready for the big move because we 'have to go home'. That's when I start missing all the dress accessaries. Like underware and socks. I have only had to buy replacements once and that time I called my daughter and had her bring some over. Had her make a Costco trip.
Nikki, I won't get to read it until I get to work tomorrow because I sent it from work. I'll respond to it with my home e-mail address so you will have my "evening address" I can't believe I have 4 different e-mail addresses! AND, by the way, you deserve the compliment! :)
Duane, I'll bet your wife did a lot of entertaining prior to her AD onset. This is probably her way of still being needed. Just a WILD guess! At least that is what I told myself (being needed) while my DH systematically removed the wall-to-wall carpet small sections at a time until the beautiful hardwood floors were revealed. <grin> We had talked about it for a couple of years, but hadn't done it. He just took it into his mind several months ago to start (while I was at work). Even though I ended up having to redo the entire house room by room as he completed each one, I'll have to admit it was worth the trouble. However, I was worried about him lifting the furniture by himself with no one else here. I never knew if he'd be okay when I got home. We were very lucky!
I'm Sorry, but I seemed to have missed the first section of this thread...who is in Oregon? I would really be happy to have someone from this forum in my territory.
Mary-- I don't know about the being needed thing. I would suggest that maybe he just wanted to please you because you had previously talked about taking up the carpet. If he knew that you liked hardwood floors I can bet that he just wanted to make you happy. That would be my take on it anyway. You never know what they are going to remember. Have you found out anything about the in-house care group. That would take a lot of stress off of your shoulders if you know everything is ok while you are gone. I went to the Doc one day last week and left DW here at home for about an hour and while everything turned out ok that didn't stop me from worrying while I was gone. You don't realize how much stress that puts on you until your health starts going downhill. Duane
Duane, you may be right about my DH's reason for taking up the carpet. Also, it could be that he wanted to get it done while he physically could do it.
You said you went to the Doc. I hope the stress isn't effecting your health. I'm working hard to keep it from effecting mine, as are the rest of us!
Duane, you are right about the group of people here. with a backup system like this to come to say whats on our minds, is a healthy and needed outlet for all of us who have AD caregiving on our plates. like you say just saying things is a huge relief of the burdens we carry -Your coming out and enjoying how welcoming everyone here is and eager to offer support may have an effect on the next 'lurker' out there to do the same. like martha says, 'its a good thing'.:) my best to you, divvi
Mary--Thank you for your concern with the Doc's visit. No it wasn't stress level that I was there for, however, it did come up in the conversation. I have three cousins that have been diagnosed with SMA type III and it is the hereditary type. I have been officially diagnosed with it now also. That appt with the Doc was just to inform me of it. We got on the subject of stress and depression so he put me on testosterone patches. He said that depression affects men and women different and he wanted to try these patches first. Hmmm Wonder if that has anything to do with my posting on a site where I am surrounded by females. Could be I guess. That Doc sure knows what he is doing.
Divvi-- Thank you for the encouragement. The kudos really belongs to the people who pulled me out of 'the closet' kicking and screaming. Thank you!
...spinal muscular atrophy? Oh, my. So many people here are struggling with serious health problems of their own, in addition to their spouses' illness. I hope your SMA is one of the relatively mild forms ...not that having ANY such disorder is "easy" to deal with.
Sunshyne is right on with that diagnosis and it is mild form. When I checked on the internet (when I was still making trips to the lab) I found that if it is later in life it will probably just affect the legs and feet somewhat. I have noticed the weakness in my legs for about year now but not drastically. When my Neuro ask if I wanted to make an appointment in about a year to see how it is advancing, I said "are you kidding?" "At my age and my activity at this point, I think I will be able to tell how it is advancing by how much effort it takes to get off of the couch." He seemed happy with that but said that He would put a reminder in the computer for me anyway. I guess that’s so I won't lose my turn in line huh. With DW having the problem she has, and I am not in any pain, it is really of small concern for me. I suppose it could turn into something more drastic but will cross that bridge when I get to it. Duane
Duane, I'm so sorry to hear about the SMA, and am relieved that you are not in pain! I will add you to my prayer list.
As to getting up off the couch, I have difficulty doing that myself. Of course, my couch is a low seater (but perfect and comfortable for watching TV and napping). I guess I need to buy a new one that sits higher off the floor! <grin>
Have you been able to find someone to stay with your DW so that you can go to Canada and see your daughter and granddaughter?
My daughter who lives in England and is home visiting for the summer told me yesterday that my DH hasn't tried to go outside in the afternoons at all since we came back from Houston, and she thinks it will be all right to leave him alone for a while longer. I do have an in-home service set up to come to the house when I call them.
Duane, Thanks for answering...We live in Happy Valley which is all but in Portland on the SE side. Willamette National Cemetary is just over the hill from us, if you are familiar with that spot. Sadly, we hear taps and gun salutes daily now.
Mary--My daughter (who is here in Oregon with us) are trying to figure out something with her employment where she can do some work at home for awhile cutting down on time that in-home care would be needed. The Canadian trip is not set in stone at this point. It is still kind of up in the air yet so no concrete plans have been made. I know in my heart that I should go but actually I haven't put 100% effort into the planning. I am glad that you are making good progress in your efforts in getting in-home care when you need it. Having something set up when you need it is ideal.
kathi37--Your quite welcome. You live just north of another one of my cousins in West Linn. Right off of 205 I believe. I understand what you mean about taps and saluted. I like listening to taps when ready to retire at night, however, it is very disconcerting when being played for a fallen soldier.
My father had a military service, nothing has ever moved me as much as this. I am sure nothing ever will. The final salute -The folding of the flag - The 3 volley salute -the intense respect of the honor guard. In my dreams I can still hear the bugler playing Taps. Moving beyond words….
Nikki--Yes Nikki, I agree with you and that is what is intended. Respect for the person being laid to rest. What I meant by disconcerting in my reply to kathi37 was that it is probably being played too many times because it means that another brave soldier is being laid to rest. The fact that a soldier has died is what is disconcerting. I'm sorry. I probably could have said it better. Duane
Duane, I completely understood what you meant …. Sorry if I made you think otherwise. I was just sharing my experience… if I lived within a cemetery where Taps was often played, I would have to move!! It has always been moving to me, but I was able to listen to it, but now I just can't... it breaks my heart.