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  1.  
    LFL,

    sh*eesh*

    I have a "laundry" list (!) from rehab too. I'm sorry you are having a bad day. Some of those memories simmer for me as well. What you went through- I want to deck 'em. I know my inspirational book tells me that is a counterproductive and energy depleting thought- but I still want to.
  2.  
    What is really scary is how poor the care must be for patients who don't have anyone to come in and advocate for them. There must be a lot of lonely, sick, demented or fragile people falling between the cracks. DH is very agitated and won't eat. He is insisting that I take him home. The Hospice SW, the Rehab. SW and I are trying to coordinate a discharge for May 9, with durable medical equipment in place, and Hospice coming out on May 10 to do the admission paperwork. This is nerve wracking. (Just coincidentally, the Hospice SW told me that when her elderly mother was in a Rehab., the aides sent her poop-filled clothing home in plastic bags without so much as rinsing them in the hopper.)
    • CommentAuthorAliM
    • CommentTimeMay 5th 2014
     
    Elizabeth, So sorry you are having this difficulty with the clueless establishment. I went to visit my DH in the NH on one occasion and he was soggy wet from his waist to his socks and shoes. I had a check in hand for 5K plus for a monthly payment. When I ask a CNA if someone could change him when they had time she said I just changed him 15 minutes ago. My guess is he had not been changed since getting up that morning. I calmly said that he must have had a lot to drink at lunch. The care has since improved somewhat but not a lot. I suppose the only way to get excellent care would be to be wealthy enough to pay a private caregiver 24/7 but that is not to be for me. I hope the hospice arrangement works out well for you. Sending a big (((hug))) your way.
    • CommentAuthorLFL
    • CommentTimeMay 6th 2014
     
    abby*, too funny (laundry list!)

    elizabeth, I guess it happens more often than we know. Pretty disgusting. And at least around here the "rehab" places are mostly nursing homes, so I'm sure that's how residents/families are treated who live there. And yes, those who do not have an advocate don't get good care. I can't tell you how many smelly, dirty & wet pullups I saw/smelled while Rich was in the dementia unit. And they want to put everyone in pull-ups so it's less work for them. Rich was still continent then and I refused to have him in pullups. and they hated me for it because I could tell how many accidents he was having because of the number of pants and underwear i brought home to wash each day. They couldn't hide the fact that they we're taking him to the bathroom every 2 hours as agreed upon.

    Hang in there - you'll get through this. Sending hugs your way and hoping the Hospice arrangements works well for both of you.
    • CommentAuthordivvi*
    • CommentTimeMay 6th 2014
     
    when my DH goes into respite at a local nursing facility they do send his clothing back in good shape. no poop on it and I know he does dirty them. I ask them to store the clothing in garbage bag and send upon his return. so far so good. I think asking things up front when discussing care giving is a must. I always speak to the nurse for him personally and say I hope to 'learn from their expertise' and new ideas. I think everyone wants to be appreciated for what they do. a little praise (even if not always deserved) goes a long way and I notice that they tend to be more helpful and nicer. we know the saying you get more with sugar. when it comes to our spouses care a bit of fiblits to keep everyone happier helps at least for me to get a tad better input and care while hes in the facility. of course, telling the truth I doubt any outside caregiver would know more about our spouses than we do! but we do what is best for them while depending on outsiders.
    divvi
  3.  
    Yes, divvi, I feel that it's crucial to be nice to the staff--and I always am. I would never vent to the staff the way I vent in this forum. When I advocate for DH, it is always tactfully and with a lot of appreciation expressed for what the staff members are doing for people. DH's aide was very nice tonight, and I was nice to him, too. When I stopped by at 8:30 pm and found DH in a dirty shirt, dirty slacks, unshaven, and with his incontinent brief soaked with urine, I called the aide, but started the PM care myself. When the aide came in a little later, we worked together to get DH cleaned up and into bed for the night. I had already shaved him and toileted him; later I helped him with oral care. The aide was sweet, and said I could just let him know anytime, and he would help DH. I tactfully maintained the polite fiction that that was true.
  4.  
    DH is admitted to Hospice, and we are bringing him out of the Rehab. and back home in the morning. Today the durable medical equipment was delivered, and we have made a couple minor adjustments in the bedroom and the bathroom to accommodate the hospital bed and tub bench. We also have the oxygen ready to go, a transfer wheelchair, and a boatload of wipes, incontinent briefs, bed pads, and gloves, all provided by Hospice. The equipment is nice--not a bunch of junk. DH continues to be very agitated in the Rehab., and the care continues to be poor--he is always disheveled and soiled-- although since the ambulance picks him up at 9am, it won't be an issue for much longer. I'm concerned about how swollen his legs are, and how weak and ditsy he is. You simply cannot turn your back on him. He fell twice in the Rehab this evening, even with the wheelchair alarms. The Hospice social worker came to the house for around an hour and a half this afternoon, talked to me at length, and filled out a bunch of paperwork. It was a nice conversation--she obviously "gets" Alzheimers. The nurse will come tomorrow. The social worker says that it might be useful to register him with the VA (he is a WW II vet),even though it will be a royal pain to get him up to the closest VA hospital. The VA has contracts with home care agencies, and the SW says we should be able to get extra aide hours paid for by the VA. I will definitely follow up on that. Tonight I am going to sit in a hot bath--it will be my last good soak for awhile--and just vegetate and read my library book. I have the "White Noise" app on my iPhone, and I've found that if I play the crashing ocean waves all night it really helps me relax. My morning alarm on the clock is called Rainforest--like a lot of tweeting birds. Anything to relax and get the worry and stress off. Yes, I'm getting desperate. Thank you all so much--I could not do this without you.
    • CommentAuthorAliM
    • CommentTimeMay 9th 2014
     
    Elizabeth it appears you are doing everything you can possibly do to take care of your DH. Hospice and the equipment they provide will help you with the physical part of care. Every hospice worker I have met are compassionate and understanding. You should be able to have hospice volunteers visit him just to give you a break. One hour of time for ourselves when caregiving can seem like a vacation. I hope you enjoyed your soak and reading your book. Stay strong and just roll with one day at a time. With Rehab care not being up to par I hope that having him home will give you more peace of mind. Hang it there, Elizabeth, we understand and we care.
    • CommentAuthorCharlotte
    • CommentTimeMay 9th 2014
     
    elizabeth - you can register online for the VA. You will have to send in his DD214 also. That will get you started. He will probably need to be assigned a primary which you will have to see at least once every two years to stay eligible. Where he is on hospice they might be able to make some concessions which you can find out. The following page might give you the info you need to get started.

    https://www.ebenefits.va.gov/ebenefits-portal/ebenefits.portal?_nfpb=true&_nfxr=false&_pageLabel=IamaVeteran

    this link is for extend care and assisted living (links on left side)

    http://www.index.va.gov/search/va/va_search.jsp?NQ=URL%3Ahttp%3A%2F%2Fwww.benefits.va.gov%2Fbenefits%2F&QT=apply+for+medical+care&submit.x=0&submit.y=0&submit=Search
  5.  
    Thanks, Charlotte. I will follow up. The nurse who came yesterday to open the case said that in her experience, around here, (northeastern Ohio), people who have never used the VA system do not get as much help as those who have always used it. (DH is 89, a WW II vet, but has always used his NYPD health insurance combined with his Medicare). She is giving me the home health aide, or "bath aide" as she calls it, for 1 hour, 5 days a week, and will possibly be able to get the aide here at least sometimes on weekends. (One aide covers three countys on the weekends, so is spread pretty thin.) We decided that DH will have a shower once a week, and sponge baths the rest of the time, which was actually what I was doing before this big downturn. The transfers are really, really difficult, and he is totally non-ambulatory now, so everything is wheelchair. Even the little transfer W/C barely makes it through the bathroom door, but it does make it, Thank God. We had the usual poop issues (sigh--yes, I'm whining--I hate poop smeared all over the place), and the barely eating and drinking issues--probably 16 oz. fluid in 24 hrs.. He has slept for most of the past 24 hrs.--conked out in the ambulance, and then slept for 12 hours or so on his sofa--I got him into the hospital bed at 9:30, and other than having to take him into the bathroom for number 1 at 6:30 am, he has been sound asleep for another 12 hours. He does look so comfortable, and so much cleaner and better-maintained than he was in the Rehab. We have the oxygen if needed, but so far there are no signs of respiratory distress. I have the main bathroom set up as "his" bathroom--it looks like a Rehab. bathroom, lol. Myself and everybody else will use the basement bathroom--a little unglamorous, but clean and totally functional. I couldn't sleep last night because I was so afraid of him waking up, but the hospital bed lowers down very low to the floor, and I did hear him the minute he woke up, so I'm hopeful that we can avoid harmful falls. Anyway, in terms of that one golden aide hour, the grocery, post office, bank, and public library are all close enough that I can get one or two errands done each day--I'm a little worried about the grocery shopping, because I'll have to use the most expensive grocery (sigh), but I guess I'll just chalk it up as a health care expense. I usually get my hair cut at the beauty school which is just a minute away, but sometimes the students are very slow. I'm thinking about trying to cut my hair myself, or possibly run out to a guys barber shop--my hair is very short and doesn't have the color in anymore--no time for that stuff these days--but we'll see. OK, thanks for listening--TMI I suppose--but there is just no one to talk to.
    • CommentAuthorMoon*
    • CommentTimeMay 11th 2014
     
    Elizabeth,

    Glad you have your husband home. It sounds as if you really have your hands full.
    I hope you are able to get more than 5 hours of aid a week. Take care.
    • CommentAuthormarg75
    • CommentTimeMay 11th 2014
     
    Elizabeth,
    What you are doing for your husband is awesome. He must have been quite a husband, and he certainly has quite a wife! I read all your posts, and can offer nothing but empathy and a deep respect for you. Wishing you strength in the coming months.
    • CommentAuthorFiona68
    • CommentTimeMay 12th 2014
     
    Elizabeth, no such thing as TMI at this site. We are here for you to vent to whenever you want. I'm so happy you have your husband back home and that he is comfortable. This isn't going to be easy, but I'm sending good thoughts your way that things go well and that you continue to sleep better at night.
  6.  
    Thanks, everyone. I've found that the toileting (every hour or two) is going better if I help him onto the bedside commode for urinating…putting it in the den during the day, and our bedroom during the night; so it is right there close to him. It is easier to dump the pot than to struggle with getting the transfer W/C into the bathroom. I always ask him, "Number 1 or Number 2?" when he asks to go to the bathroom, and I only take him into the bathroom if it's Number 2. I showered him yesterday morning, and the transfer tub seat combined with the handheld shower really works well. The aide situation is this: There are four aides available, and apparently you don't have one specific aide. And there is no set schedule--you just expect an aide when you see her. So the one hour per day might be any aide at any time. After years of working in home care, I think this is insane, but hey, at this point I'll take anything. I have my errands on a list in the car, along with everything I need to carry out the errands, so am ready to jump the minute someone shows up. Yesterday I grocery-shopped, and just barely made it back on time…, even with being super-organized and going to the closest, most expensive (sigh) store. And of course, since the aides apparently come in the afternoon, all his morning care, and breakfast and maybe lunch will already be done when they get here. I have to be here at 2:30 to get my six-year-old granddaughter off the school bus, so that my slow me down if the aide comes around that time. My GD was sniffly last night--if she had to stay home from school today, I asked my daughter if she or my son-in-law could take her instead of me having her all day, as I thought it would be too much for me with DH. My daughter got very angry with me--was really hurtful--didn't see why I couldn't just take care of the little girl and DH both. So I feel bad about that--SIL "gets it" more than DD. He called me to say he is off work the rest of the week, and will take over any childcare needed, including coming over and getting GD off the school bus. (He is an attorney--had a trial this week, but it got cancelled.) Overnight with DH last night was eventful. He only toileted twice, but was agitated most of the night, calling out every hour or so that he wanted to go home, that I should not leave him, that he wanted me right there beside him in the hospital bed, not over in the queen-size. I am beat, but it is a beautiful morning--May in the woods is so pretty, birds singing, flowers blooming--and the coffee is strong and plentiful. Thanks again, everyone. The kind words and good advice mean sooooooo much.
  7.  
    oops….it should read " so that may slow me down"
    • CommentAuthorMoon*
    • CommentTimeMay 13th 2014
     
    Elizabeth,

    I marvel at your optimism. I am glad, however, that you drew the line with taking
    on more than you can handle. Trying to care for a sick child at the same time
    as caring for your husband may have been too much for you right now. Try to
    get as much rest as you can. Lots of good wishes!
  8.  
    Toileting every hour or two continues to be tiresome, and precludes me from having a Hospice volunteer or a neighbor come and sit with him. He has toileted this frequently for years (probably prostate issues, but he has always refused any intervention)--but now someone has to do the transfer. I've had no sleep for three nights--the Ativan eliminates the "take me home" agitation, but he is calling out every hour or two, "Nurse, nurse!" or "Help! Help!", and of those wake-me-ups, two or three turn out to be for toileting. Hospice is increasing the Ativan dosage and frequency, and if that doesn't work, they're going to add trazadone. I'm a little nervous about trazadone, but I guess we can try it. The nurse today said that they offer respite at other facilities than the one we just brought him out of, where the personal care was so atrocious. I hope that is true, because as exhausted as I am, I would not put him back in that facility unless I myself had some kind of emergency situation to deal with. Anyway, I'm doing most of the personal care myself in the mornings, giving him food I know he likes--he is mostly feeding himself, and is taking his pills OK without them being crushed. His hair is cut, he is shaved and teeth are brushed, deodorant is on (Old Spice), and clothes are kept clean. BM's are OK with Miralax and Senokot--and he has not been incontinent since I brought him home. I guess the clincher will be if we can get me enough sleep so I can do this. The aides give me the opportunity to do some errands, but only once was one here early enough to do the shower.
    • CommentAuthorMoon*
    • CommentTimeMay 15th 2014
     
    Elizabeth,

    My heart goes out to you. The lack of sleep is a horrible thing to endure.
    You won't be able to continue this routine indefinitely. Eventually it will hit you hard.
    Hopefully the additional meds will help keep him sleeping for a longer period.
    I wish you well.
    • CommentAuthorLFL
    • CommentTimeMay 16th 2014
     
    Elizabeth, my heart goes out to you too. As moon* says, you can't continue without sleep indefinitely. You are doing a wonderful job but you need a break to rest and recharge so you're well enough to continue caring for him.

    Trazodone has worked for many spouses on this board, so it's worth a try.

    A suggestion...can the "morning" routine be done when an aide comes (like afternoon) instead of the morning to give you a break? That might help relieve you of some of the physical caregiving. Just a thought.
  9.  
    The increased Ativan has helped; he still toilets 2 or 3 times a night, but this gives me some blocks of meaningful sleep. The aides come Mon.-Fri., but catch-as-catch-can. I know that theoretically I could leave him unwashed, unshaven, bed not made, etc., but I hate to have him sitting around for hours like that, just because the aide isn't there. This morning it was chilly, and I just gave him a sponge bath and got him up and dressed and shaved. (Usually no Sat./Sun. aide, although there is at least a possibility that there may be one sometimes.) The toileting is still the biggest nuisance. It is every hour or two, and he likes to hang off of me, and not put his weight on his own feet and legs; then he tends to lose his balance and lean backwards. I am meticulous about body mechanics and about not letting him go dead-weight on me, but I'm afraid that sooner or later he will zig when I zag, and I'll hurt my back.He is also not telling me whether he thinks he's going to have a BM or not; so twice I've put him on the pot in the den and he smelled up the den, kitchen, and dining room with BMs, instead of me taking him back into the bathroom. I think he's figured out that he doesn't like the difficulty of getting the transfer W/C through the bathroom door. I already find that by bedtime my legs are killing me, especially my knees. This is new--not something I've ever had before. I take 600 mg. of ibuprofen and try to get as much time in bed off my feet as I can--it does help.I think this pain is because all these transfers are just too much for my body. Even as skinny as he is now, he still weighs maybe 140 lbs. and is 5 inches taller than I. That 140 lbs. starts to seem very heavy after transferring it at a minimum 12 times in 24 hours. I'm not the hypochondriac type, and at 64 have really been lucky not to have the aches and pains that many do. Oh well…sigh…there's always a first time.. Next task: trying to figure out how to shop for groceries when I can't get out of the house: The family has offered to shop on weekends, and I'm using my Amazon Prime for things like paper products. We'll see if this flies.
    • CommentAuthorLFL
    • CommentTimeMay 17th 2014
     
    Hi Elizabeth, have you researched if your local supermarkets offer a shop online service? In my area (NJ) both shoprite and stop & shop offer online shopping and even home delivery. It became too difficult to shop with DH because he would put everything in the cart and I would have to remove it. He also ran the cart into just about anyone in his way. So, I started using their online shopping service-you order your groceries on line, they shop for you and then you pick them up at a designated time. Or you can schedule to have them delivered to your home. I was skeptical at first particularly about the shopper choosing meats and fresh produce, but generally even that has worked for us. I now shop online and pick up exclusively. shop Rite charges a $10 fee for shopping and the fifth online order they waive the $10 fee. I believe they charge $15 for home delivery in addition to the $10 shopping fee, but I always go and pick mine up. They load the car. I don't know the rates for stop & shop but their service is called pea pod.

    Also, contract your local area office on aging or your religious group...both may offer grocery shopping services by a volunteer for little or no cost. One less thing you have to worry about.
    • CommentAuthorCharlotte
    • CommentTimeMay 17th 2014
     
    elizabeth, wish we still sold air purifiers. They put ozone into the air which eliminates the odor very quickly. You know you can put bags in the pot so when he does have a BM you just pull bag out, tie up and put in garbage. The only other option seems to be diaper time. You have to do what is best for you, not him. I assume when he feels the need to urinate he refuses a urinal.

    My heart goes out to you and all that are dealing with these problems. I know one day it will be me.
    • CommentAuthorLFL
    • CommentTimeMay 17th 2014
     
    Charcoal without chemical additives (like you would use to start a a barbeque-but check to make sure there are no additives) and baking soda will help absorb the odors. either put them in the bags in the pot or in a container somewhere safe in the room or next room where he can't reach them but they will still absorb the odors. Works quite well.
  10.  
    Elizabeth, I am going through the night thing also. I have a motion detector on the dresser and the alarm under my pillow. It seems I never fall into a deep sleep because the alarm keeps going off 4 to 6 times a night. DH is having trouble getting up and down and helping him all day and all night is causing old back problems to surface. Seems I'm always trying to hold back tears and I think it's from lack of quality sleep. I have some help during the day some of the time but I'm not comfortable with having someone here at night...at least not yet. I get out to buy groceries when I have help and it's good. Sometimes when I get out, I want to shout I'm free, I'm free....for about 1 1/2 hours. A friend whose wife died with Alzheimer's said he kept reminding himself that this is temporary. Yes, but the end of temporary is death or placement. That's not something that comforts me.
    • CommentAuthorLFL
    • CommentTimeMay 17th 2014
     
    Another suggestion....I have the motion detectors but bought a video baby monitor. That way if you're not sleeping in the same room you can view your husband and see if he's getting out of the bed or just setting the motion detector off by moving a leg or an arm. Having the video monitor has been a great help...we only get up when we know for sure he's getting out of the bed. It was worth the $125 investment and we can hear him as well. Many nights he just sits up on the side of the bed (setting off the alarm) and then lies down after 15 or 20 minutes. The monitor I bought allows you to add at least 1 extra camera (which I did) so now I can see him wherever he is in the room at night.
  11.  
    The den has a door to the screened porch, so I've found that just opening the door helps a lot with odors, at least when the weather is warm enough so I can do that. I have an odor neutralizer spray, too, but I really like my lavender water--a few drops of essential oil in a spray bottle of H2O. It really helps freshen up the room without being overpowering. At night, I am sleeping in a different bed in the same room so I hear him when he starts yelling or just stirring around trying to get up. The Ativan helps settle him down a little, but I have found I just have to forget about my preferred schedule (bed at 11pm, up at 7am), and just try to sleep when he sleeps…whenever that may be. I have sprained my wrist by supporting him with my forearm instead of doing a transfer correctly…doh…I won't make that mistake again. Regarding a urinal, of course we have one, but he has never seemed to be able to use it without making a mess, so it is better to just put him on the commode. I think the problem is that the once mighty oak has become an acorn, and there just isn't enough there to get it into the urinal. Today my SIL is coming over to sit with him so I can do a "big" grocery shopping. Thanks to everyone who is reading and also responding. I am so mentally "gone" that I think I'm in another dimension. This site makes me think I might still be a person.
  12.  
    Well, so much for Hospice's "bait and switch" tactics of saying I could get five days per month of respite. When the social worker started to talk with me this morning at my kitchen table about putting some respite together, she announced that you couldn't really have that much. Like, yes, it's a benefit, but no, they can't approve it. If you use that much respite, it will look like you can't handle your loved one under a home care plan, and Hospice might not be able to carry the client. So the bottom line…you can have five days respite per cert. period, and DH's cert. period is 90 days. Be still my heart. I really am grateful for whatever they can do, but I could do without the games-playing.
  13.  
    Just curious--how much Hospice respite are people on these boards getting?
  14.  
    I was told recently that I can have 5 days per certification period which is 6 months in our case. We had to use the respite for our 1st 6 months in Feb when we were without power for several days. Now we are in the 2nd 6 months but I'm not sure I want to do it again. He really got lost in the shuffle this last time. It was a big facility and the day I was there the longest he didn't even get his lunch till 1:30 when I asked about it. His roommate had both arms in casts and no one came to feed him. I wonder if they fed Ron on the days I wasn't there. He is non verbal so would not ask for help.

    The NH we used before Hospice is not Medicare certified as it is a tiny 20 bed unit and it isn't worth all the hassle to get certified. I loved it there. Of course I could pay myself, but that ends up costing a lot. I know as he had 2 ten day respites last year that we paid for.
  15.  
    Thanks, Mary. We don't get a choice of what nursing home he would go into: It would be whichever one had the first available bed. I am going to be very, very wary...
    • CommentAuthormyrtle*
    • CommentTimeMay 29th 2014
     
    Hi elizabeth,

    I just saw this thread and started reading from the beginning. I was struck by how much we have in common. Older husband, younger wife, some savings and limited income.

    In our case, the VA has been very helpful. My husband never had VA benefits before but I signed him up and now he gets services under a program called “Community and Home-Based Services.” For several years, they have paid for 3 days of day care per week (plus transportation). Last year, I called them explaining that I was a cracking point and they authorized respite care in the form of 30 visits (of between 2-6 hours each) from an aide provided by an agency. The VA has contracts with many agencies.

    You might be able to get the ball rolling very quickly by finding a local adult day care center that has a contract with the VA. Since I had no idea how to find the correct person in the local VA bureaucracy, I called a bunch of adult day care facilities and when I found one that had a contract with the VA, the director gave me the name of the person at the VA who they deal with. Although you would not be doing the day care thing, the same VA person would probably be in charge of authorizing the respite care.
  16.  
    Hi, Myrtle! DH is homebound, and one thing I need to check out is whether I can somehow sign him up for VA benefits using the durable power of attorney. If not, s-i-l says maybe we could bundle him and the W/C into the car and haul him up to the VA to register him. Or just arrange for the wheelchair van and have them transport while we follow in the car. Toileting issues are going to be a huge issue during this marathon--you can't really take DH anywhere--like for a walk in the park across the road--because all he wants to do is to be taken to the toilet. I've always thought adult day care was a great idea--but DH has consistently refused to go--and now he's really not functional enough. It's a little frustrating, because a nice one very close to us does have the VA contract. You and I are probably in the same boat--need to provide for the husbands' needs while not impoverishing ourselves and ending up without enough funding for our own old age.
    • CommentAuthormyrtle*
    • CommentTimeMay 29th 2014
     
    elizabeth,

    As I remember it, it is a 2-step process.

    I don’t think you actually have to go to the VA to sign your husband up for benefits. I just sent my husband’s Separation Papers and the completed benefits form to the eligibility person at the VA. (I got HER name from the “Community and Home” benefits guy at the VA and I got HIS name from the day care center that had a contract with the VA). I also attached a copy of the power of attorney, although I don’t remember if I signed the application or if my husband signed it (with my help).

    The only thing your husband has to go to the VA for is the physical exam but that takes place after the application has been approved. A doctor has to confirm his condition before he can get certain benefits. It’s a short exam and if you bring your husband’s recent medical records (test results, etc.), they will rely on that. They also appreciate it if you bring his Health Care Proxy ) or whatever that is called where you live). Since your husband is bed-bound, why don’t you call them and ask if they can provide transportation for the physical exam?
  17.  
    Yes, I'm working on it, and also need to plug in some kind of extra aide hours--although that may come from the VA eventually. Stay tuned!