Thanks all for your support. Some good news now. The VA head social worker called me this afternoon and said they were going to get me help. They have a contract with the visiting nurses which is also connected to the hospice service I am getting. Within hours, a person from the Visiting Nurses Assoc. called and said they would be here tomorrow to evaluate my dh and I will get 3 hours on Monday and Friday. Free. Wow...that sounds super and I won't have to run around like a chicken with its head cut off trying to get everything done on Wed. when the cleaning lady watches him..which I never could get evey thing done. The person that comes will shave him and fix his breakfast and change the bed or whatever I need to have her do for him.
great news Judith, gosh, now I feel a bit guilty whining about my VA respite only being 10 hours a week.
I am thinking on changing it up a bit...I always go to town and that takes 3 and half hours out. I may go hang out at the house next door that I manage, then go to our local beach, do some stuff closer to home.
Not much shopping out here, but I could do a bit at the grocery.
I really hope this lightens it up a bit for you JudithKB!!!!!
On being cold - that has been discussed in other threads too. My husband is not as far along but we go out dressed like this: me in shorts and blouse, husband in long pants, shirt and sweatshirt. He will change to shorts if it is in the 80. Today the AC was running and he stayed in his shorts. You never know which days he will be cold or hot.
On the other had, my manager who just turned 50 and is a 'bean pole' always is wearing long pants and warm top while the rest of us 'mature' women with ample insulation sweat away cause she won't turn the A/C below 73! Got ta love it!
I don't know if my husband is cold or if it is an obsessive behavior (he has FTD) but he insists on wearing some type of jacket no matter what the temperature is. If I try to keep him from wearing one he will go through the closets looking for something that in his mind is a jacket. He's come out wearing my clothes and a suit coat among other things. I found some tee shirt weight hoodies at Old Navy and those are what he wears. It was 100 degrees here in Chicago today and he had on his hoodie.
I am facing declines in my DH too, not of the anxiety variety but of the sleep sleep and nap nap nap sort of thing..no conversation really at all, meals..eh...why bother....he is more into grazing and snacking through the day which is ok with me as at least he is getting something in him...
I am so sick of this and suffer fools not at all so I think it is time to get my coffee mug out that says " I am out of estrogen and I've got a gun"..i.dspo0000000000Z!~ AND THAT LAST BIT IS THE SIGNATURE OF MY KITTEN..XENA THE WARRIOR PRINCESS AKA ZIPPIE...
Judith, good news is always encouraging. Even though hospice was a part of our lives for only a short time, and I know it was much shorter than for many, they were wonderful.
Sending you best wishes for those hours of respite.
The hospice nurse was here today and the social worker. The nurse was shocked also at the difference in my dh. She thinks he might need oxygen even though he isn't having a difficult time breathing. But, she said that his whatever they call it when they test you with that finger thing showed his oxygen to be low. She didn't understand why that is happening...so they might be ordering the oxygen for him.
Also, the Visiting Nurse was here to go over what the VA will pay for home care for my dh. I am entitled to 24 hours a week. Right now, I told her I just wanted 4 hours on Monday and Friday mornings. But, I may increase that after I feel more comfortable leaving my dh with them. He has slept most of the day today and even slept while hospice was here.
Thanks blue. You work for hospice don't you? And/or you know lots about it. The hospice people used my dh's heart condition as the reason for an evaluation and they told me they had to do it that way because he wouldn't qualify for hospice evaluation if they used his AD condition. They said the person has to be bedridden to have hospice for AD if they wanted Medicare to pay for it. I did some research and I don't believe that is correct. Everyone has been really super, but I have to say, I don't think they know alot about AD.
Of course, my major concern right now is his loss of weight 8 lbs. in 6 weeks...and his normal weight is 142 and it is 10 lbs since the first of the year. He is now 132 lbs. Isn't the weight loss usually a sign to be concerned that this might be the beginning of the end...so to speak. With the other things that have worsened, like his speech and I can hardly understand a word he says...makes me think...this is the beginning of the end.
This is part of my next hospice seminar- "When Communication is Difficult: Reaching the Cognitively Impaired Patient"
For hospice volunteers as well as staff, the communication essential to making a connection can seem difficult, if not impossible, when the patient has a dementia disease. This session will provide skills to communicate differently when there is dementia – to be with patients in the moment, to use past memories to spark new conversation and to understand even when conversation is no longer possible. Sara Wright, MSN, CRNP, received her nursing diploma from Memorial Hospital School of Nursing in Philadelphia. She earned her BSN from Wesley College and her MSN from the University of Pennsylvania School of Nursing. She is a gerontologic nurse practitioner with certification from the American Nurses Credentialing Center.
Objectives: •Utilize skills learned to communicate in ways that allow patients to feel supported and have a role in their care coordination. •Describe the need to validate patients in their reality and provide a caring environment for them patient to express themselves. •Identify ways which patients with a dementia disease may be trying to communicate pain, discomfort or other care needs, andods to address the needs in comforting manner.
Low oxidation levels will cause problems. My father often suffered hospital delirium when hospitalized and I had to bug the staff to put him on oxygen, which usually helped, but not always. Most of the hospital trips had to do with blood clots which would lower the oxygen level, and his health was such that a lowered level always affected his behavior for the worse.
I think the hospice will be ordering oxygen this week for him. Also, I think my dh is going to need a hospital bed very soon. He has a very difficult time sitting up when trying to get out of the bed. He also has to just scoot forward little bit by little bit to get to the edge of the bed to get his feet on the floor.
He is now sleeping 24 hours a day except when I wake him to get up and eat the 3 meals a day. I want him to keep eating and not lose any more weight.
This sudden decline has been a real shocker...I just sit and don't get anything done...I am in a daze... and heart broken. I knew this time was coming, but didn't know it would be so fast and there seems to be no stopping the down hill slide.
So sorry, Judith, for what you're now going through. In the last few months my DH is declining faster and faster. Today, he asked "Where do I put the bread?" I said, "In the breadbox." He asked, "Where's the breadbox?" We have a drawer under our cabinets where there is a box for bread that's been there for 25 years! He has asked where the refrigerator is and where the glasses go. Every day for as long as I can remember he has emptied the grounds from the coffeepot and cleaned out the coffeepot. He doesn't do this anymore. He always put away any dishes that were left in the drainer. All of this has happened in the past few weeks. He says he isn't hungry when it's been hours since he's eaten, same with thirst. He doesn't like anything (except for oatmeal) that's put in front of him, or if he does he eats only a small amount. He has lost 7 pounds in the last three months.
I do want to ask those of you who are getting VA help something: Can anyone who has been in the military get help from the VA? Do you have to make, or have, under a certain amount of money to be eligible? I would certainly appreciate it if someone could answer this for me.
I don't know everything about the VA benefits. But, I do believe in order to get most of their benefits one has to be retired military or have a disability that is service connnected.
My dh served in Nam and originally had 10% disability caused by an accident while in Nam. He could go to VA doctors and also he could get all his medications through the VA and this was free. The VA charges your medicare and other insurance for these services. Coco (see her posts on here) gets 10 hours a week of free time from a VA caregiving source so she can be away from home while her dh is cared for. I get 24 hours a week from the same type of service...but, I think I may get more because of my dh's service connected disability.
Now he has 70% disability for service connected illness...Expousure to Agent Orange causing heart problems. There is a big jump in what you get when your disability is over 50%. He now can go to nursing homes, VA hospital free and get most everything the VA has to offer free.
You need to see your local VSO (Veteran's Serivce Officer)...contact your VFW and they will send you in the right direction. The VSO should be able to tell you what is available depending on your dh's service record.
I suggest you do this now because the VA moves very slowly. And, be sure to take his service records with you if and when you go to see anyone concerning the benefits offered.
My dh is a Korean War era veteran. He gets his meds from the VA and also got his hearing aid from them and a cane. We live near an AF base and he gets 6 mos. checkups from the doctor there. However, my sister is also a veteran around Korea time served 8 years and when she applied they ask for financial status and she was disqualified. The financial was never asked when dh applied. So who knows what is required now?
Bev, if your DH has a military disability, JudithKB is correct. If he served during certain times, but doe not have a disability, he may still be eligible for something like Aid and Attendance. However, they are strict about income; he must be housebound, and many other things they require. I went through the whole process and he qualified for it except for the income - we were just above it! Gets nothing from VA except lab tests and doctor's appointment every six months, which I don't need, but have taken him. And he could get meds from VA, but they cost more through VA than through our RX plan. Go figure.
Bev, on the VA. And thanks to Judith for letting you know a lot already.
We qualified for basic medical as long as I do believe, he had served two years , and it may have been that it was in war time. (2 years in Vietnam).(He has no disabilities) Due to our income we are at a level where we make no co payments for Doctors visits, and prescription co pay is $8 per refill.
We also qualify for 30 days a year of respite at the VA hospital in Honolulu, and I get 10 hours a week of in home care. Took a lot of wrangling to get that. Let me know if you have any other questions on that.
Yeah just get a hold of the VSO like Judith said. And Judith, oh I am so so sorry for this sudden decline, wow that was fast! I so appreciate your updates as painful as it is. All these updates, so I can watch out for any changes here too.
Sweet Coco....sometimes it just happens ...no warning, no indication. We all want to plan and be prepared, but don't count on the fast decline giving you any "heads up". Of course, I knew he was on what I thought was the typical decline in stage six...which according to some of the charts last approx. a year and half or two years...well he went into what I thought was stage 6 and out in less then 6 months. Except for incontinent...and is in some of stage seven. His speech is just gone...I mean anything that anyone could understand after about 5 or 6 words. And he has a difficult time remembering how to get around in the house....here are just a few of my new duties: Dressing him, helping him in and out of the bed, bathing him, shaving him, cutting up his food (I want to be sure he doesn't choke). Watching him while he is walking...very unsteady. I'm now taking his blood pressure 3 times a day...because he seems so weak and cold. I have switched to slip on shoes so I don't have to tie his tennies. He is so sleepy (of course he was taking long naps before,) but could stay up after eating dinner, now he gets up...eats...and says I need to get some sleep. back in bed until I wake him for the next meal. Most of the above has happened within the past week.
I don't think I could take him any place. I am not sure he can get in our SUV...I will soon find out, he has a dr. appt. tomorrow. I am going to test him to see if he can get in the car tonight. I can't lift him...that I know, maybe he could use one of my step stools.
I am hoping hospice thinks he needs a hospital bed. That would help with getting him in and out of the bed...our bed is really high.
Question of anyone that uses a hospital bed...did you have to get special sheets or can you rent them or does the rental place provide them?????
Hospice provided Claude with a hospital bed. It used single sheets. I had a set of single sheets/blanket stored away from when the kids had single beds (I never throw things away) and a friend loaned me a couple sets.
I don't know of any place that rents sheets. The medical supply place Hospice uses do not provide them.
Thanks redbud....I have lots of queen size sheets....and I will just make them smaller if need be. I had twin bed once and gave them to my daughter who gave them to someone else...maybe she still has the sheets... I hope so.....or I can just go to the goodwill store, bet they have some cheap.
I am no stranger to this but that does not mean I am any less sorry.
Althought it was in alf, hospice supplied not only a hospital bed but one that was extra long as husband was 6'2". They also supplied a special type of mattress; it had the name of a shape? Sorry I can't remember but it was something like a "spoon mattress". They supplied all bed linens and all incontinence supplies as well as a portable urinal and a portable commode. The only thing they did not supply was pillows. I could have brought them from home but alf provided them. I had also brought a big basket full of towels but they never seemed to get much use. I think alf preferred their standard isssue whites for laundry purposes.
I don't know what your prayer's are at this point but I echo them.
My husband has VA medical. Veterans only had to serve one day in a combat zone and financial to qualify for medical. I think financially it is somewhere in the $32,000 ballpark for 2. SSDI comes no where close to that.
Judith KB you sure were right on the decline not giving a "heads up" Last night Dado got up yelling really angry about something and it made my hair stand on end, very creepy. I was not scared of him, it was just the sound of his voice was like a stranger.
I just got off the phone with our wonderful VA social worker. She told me when they were out the other day, she did not want to say it in front of Dado, but, to me, to please call her if anything scary happens and don't hesitate. It is so nice to have someone BELIEVE me, besides all of you of course.
As for Dec. respite in Honolulu, it looks like , we can only get 10 days, not 20. That is ok. The way things are going, who knows by then anyway. The social worker talked to me about eventually having to place, and it sounds like she is there to help me.
No wonder I have been sad. Dear friends I just want you to know, that I am feeling just a bit lighter today, for whatever reason, I don't want to make anyone worry. Maybe my little freak out yesterday was one of those so called "purges"
I love him so, but, it is not really him anymore.
Judith also I hope you are ok, I know that is trivial in your situation but you know I care.
Right on Bluedaze....nothing is trivial for a caregiver. It is all important to all of us the changes that take place...I think that is because most of us have never had anything near this type of experience and it is just a shock to our systems to see our loved ones decline so especailly those of us that have younger spouses that should be outside cutting down trees, washing the car, driving to the store to pick up a few things for us and all they can do is sit in a chair or slowly walk from one place to another.
Last night had to take the 3 garbage cans to the curb for this morning"s pick up. I can do it, but because I am so short I can't get the right leverage on the cans and it was chore to say the least. My dh just stood there and watched me with a sad look on his face and it broke my heart. There is no way he would allow me to do this type of thing if he felt he could do it. It is him that I felt sorry for not me...I will figure out a way to do it when he isn't watching.