DH has taken a turn downward. I am so worried. He is having trouble walking. He doesn't talk much. He does sleep a lot. I know his eyesight is much, much worse. This morning I was trying to help him get his shower and he said "why are you trying to hurt me?" It just devastated me. I know you have all been through far worse and I probably will on this journey but it was so pitiful...he thought I was trying to hurt him. I tried to hold it together until I could get him showered and dressed and now listening to his music, but this is heart breaking. I hate this disease. Thanks for listening. I just want the day off to cry. Why is this happening to him?
My husband had stomach pain that took us to the emergency room and a hospital stay for en endoscope and colonoscopy. Nothing was found. They called it phanthom pain from Alzheimers disease. The pain they complain about is real to them even though there is no obvious reason for it. Maybe it is time for just sponge baths. They would be less stressful to him. This disease is not fair to anyone, patient or caregiver. All we can do is listen and if they say something hurts that is being done for them, then we have to find other ways of taking care of the situation. You are doing your best for what you know.
Audrey--There is no bottom line answer to why this is happening to him. He has a disease which is causing the destruction of all the connections between his Brain and his body. Why did he develop this and not someone else? No one has answers like that--at least not at this time. It's time to let that quetion go. It just adds to the craziness of what you're dealng with. What I've observed with my DH is that as the 'wiring' gets damaged, his perceptions get scrambled--he's hot when it's 40 degrees out and cold when it's 85. He's hungry 15 mins. after eating and not hungry 10 hours later without having eaten between. And he forever is getting wrong words. You can't take what your DH said personally. He may have meant "help". Deep inside he knows who you are and what you mean to him. He knows you are taking care of him. The bottom line answer to to all this is---IT"S THE DISEASE. Be aware: these kinds of thing are at the root of its efforts to take us too. Don't let this eat you up.
Thanks, Carosi, for the good explanation: wiring damaged, perceptions scrambled. Explains much of hbs behaviors. This a.m. I washed his hair and shaved him; then he took over "final" shaving--many times blade over chin. Wondered if there'd be any skin left. Will NOT take a shower "you can't make me." So, maybe adult wipes are in order if he won't sponge w/a washcloth. Hasn't changed underwear for weeks; so I told him this a.m. to toss it in the hall because I'm going to be doing laundry. We'll see....
Zibby, Yes, right now my DH is sitting watching TV dry shaving. At times his face is so scratched up, but I can't convince him he doesn't need to shave anymore (he carries his bic razors in his pockets) Carosi, I also thank you for your good explanation. My DH is also unpredictable, & I try not to take things he says personally, but it's difficult after 41 years. I have learn3ed to keep my mouth shut & not argue when he tells me he has been here or there or done things that I know he hasn't. I just say, "Oh, really?" Audrey, we all know how you feel. We have been there & done that to some degree. Our hearts go out to you cuz WE UNDERSTAND!
I am really learning to forgive and forget when my DH says something to me that hurts. It still hurts, but I've finally learned that it IS the disease and I turn the other cheek. It has made life a little less stressful for me, but I know that something else is lurking around the corner. The good times (and this is one "good" time we're in right now) go away and something else takes it place, but for now I seem to be handling things fairly well and I'm grateful. I do think, though, that if it weren't for this website, I wouldn't be able to do as well as I am. Oh, I don't mean that things are all roses, we have our problem days, and some days I want to shut my bedroom door, climb into bed and put my head under the blankets, but the information available here from Joan and everyone else has helped me in more ways than I can say.
Audrey, what they say comes from their fears and is not directed at you really. They resist showering and bathing -- my DH who is in a facility gets "combative" (their words to me this week) and punches and yells at the caregivers when they try to bathe or shower him. They all seem to become afraid of the shower. I read somewhere that they lose their depth perception so the shower looks like a deep hole that they can fall into. Don't take it personally, my DH who was always so sweet to me once told me "I am going to get even with you for this" referring to a hospital stay. The AF is upping my DH's meds (seroquel) to keep him calm during shower time.
My dh was opposite of many of you. He thought he had to have a shower every day - no getting around that. He progressed to the shower chair and doing his own with a hand-held shower, then I had to help him. There is a neat shower head you can buy on the Internet that has the flex hose and it sort of works like a hose nozzle you use on your outside garden hose. It has a lever you have to grip for the water to come out. This works better in late stages while they can still help. You can leave the water running and control it at the nozzle. My dh would get panic attacks when I was helping him and trying to rinse his hair. He would panic if too much water got on his face. I kept a hand towel ready and proceeded as quickly as possible with his head and dried face and hair before finishing. I can't remember the brand of the nozzle but it was purchased directly from a company and their only product.
Maggieroni, my husband is also in a nursing home and showering is the worst time for him. They can hear him hollering all down the hall . The aide is probably exhausted by the time she's finished. She said that each time she takes an article of clothing off of him, she has to calm him down Other that the showers, he's a very pleasant man.
Showering is a problem here as well. For a while, a little while, he was really surprising me and would take a shower or a bath without much prompting, but it looks like that is a thing of the past again. It wouldn't be so bad if he would change his clothes at night, but he doesn't, and that's what makes me worry. It's a good thing he has a dr's appt. tomorrow morning, he wouldn't go there without a shower!
Thanks to you all. What would I do without your help? I don't want to find out! DH has been a little better today but still a little unsteady on his feet which really bothers me. He loves to go outside and each time tells me "I really like being outside....feeding the birds." During the night, it almost seems as though he is "there." If he moves, I kiss him on his head and he laughs and sounds just like he did before. Don't think he is fully awake but just that laugh brings joy to me...along with a touch of sadness for what is no more...
if your spouse is on medicare or disabliity i bet they could get you a wheelchair and you can take him out to sit and feed the birds. i always had the transport lightweight chair for DH from mid stages to move him around even while walking. they get tired easily and its a good thing to have a chair to be able to still move about. we know how you are feeling. divvi
Great idea divvi! Thank you so much. I really believe that "we" can always count on each other to "know how we are feeling" at all times. Thank you all.
Audrey, As divvi said, if he is on Medicare, he should be eligible for a wheelchair. When my husband wasn't walking, the doctor wrote an order for a wheelchair. Medicare will pay for 13 months, after that time you will own the chair. The folks at the Medical store told me even if my husband started walking again...which he has, to still keep the chair in case it was needed at a later date.
I understand, Audrey. My life partner went through a period where she was convinced I was trying to kill her. I broke my heart, too, both because I would never hurt her and because her fear was so real to her. And she screamed so much when the facility showered her they just went to sponge baths, which were no picnic either. It's so hard when they think you are trying to hurt them, but Carosi is right, it's the disease. I had to tell myself that many times. I used to just say, "I'm sorry" and that used to calm her down. Go figure.
My dh has just come back from respite care (9 days) where the biggest problem was showering. He would sit with his hands in fists at the breakfast table afterwards, it was so stressful for him. I DID tell them (and it was written down) that at home he takes an evening bath without too much trouble, but that probably does not fit into their routine. To get him used to taking a shower I have been having a home help come in once a week. On six successive Tuesdays they sent six different women! Some were more successful than others. One of the best was finally back again this week. It was great. After she gets him into the shower I quickly lay out his clothes on the bed (if he sees them before the shower he wants to put them on right away). He looks so nice when she gets done with him.
Jeanette welcome back and glad your spouse got thru it, even if a bit unsettled. next time may be easier for him and you. hope you had a good trip. divvi
welcome back Jeanette. Showering is difficult at my house, too. DH won't accept help, and he'll go 5-6 days in the same clothes (even to bed) without a shower. I have to choose my battles, and that's one I'm not taking on right now. He's starting to have really bad anger issues, and has become physical (pushing) at times. I sleep on the couch if it gets too bad.
I'm so glad (sorry) to read others are having shower/clothing problems. My hb WON'T shower or change clothes to the bottom layer. He wears several shirts and 2 or 3 pairs of slacks and 1 set of underwear. I've been able to coerce him into letting me wash his hair and start the shaving routine (he finishes). It's almost like he doesn't know what "shave" means until I start. I'm gradually taking clothes away; he hasn't missed them--yet. I figured if he didn't have them available, he'd soon stop layering. Even wears his belt to bed. When I put clothes on the bed, he tosses them in the hamper. I count 1 blessing--he's still continent. OTOH if he weren't, maybe he'd shower and change underwear:) Not maybe, he WOULD. :)
My DH is in a nursing home. He has a fit when it's time for his weekly shower. The aide said that she gets one article of clothing off of him, then has to calm him down. This goes on with each article. She said last week she had to wait until he was asleep in bed to wash his private parts. I really feel sorry for the aides. I know he hollers and swears at them. Normally, he's very pleasant.
I'm seeing my own dear husband in so many of these posts. He has slipped drastically in the past week or so. Have no idea what has cause this. He is incontinent much of the time. I think part of the problem is his eyesight and I'm not sure he is seeing. When I put his cereal in front of him he just sits until I put his hand on the spoon. Sometimes he has the spoon turned bottom up and tries to dip cereal. When he looks "at" me, his eyes are not necessarily looking in my direction. He is unable to dress himself, find different rooms in the house, I shower him without too much trouble, but it is getting harder and harder for him to grasp the concept of "stepping into the shower." He has enough Aricept to last through November and has a neuro appointment in early December. I'm seriously thinking of asking to have him taken off of Aricept. One thing he does that is very tiresome and so very sad. He gets one thing on his mind and obsesses about it. One of our neighbors came and made a remark about being tired and wished she could just "shut out the world and sleep 24 hours." DH was awake in the middle of the night saying "SHE wants to sleep" or variations of that mantra. So sad to see him agonize over things like this. I finally "called" the neighbor around 4 AM and she "said she had slept a very long time." It satisfied him for the moment but he was back on it the next morning. Otherwise, he talks seldom. He still likes to sing. This is just so very sad. I don't need 24 hours of sleep but I think if I had a quiet place I could cry for 24 hours! He is falling more often and I'm afraid he'll break a bone. Not safe to leave him in a room alone. Yesterday I really was thinking strongly about putting him in a nursing home. Then today....so very hard to make a decision.
Jackie, I'm sure it is hard to make the decision. I'm not to that point yet, but it sounds as if you may be. The standard line is that caregivers typically wait at least one year too long before placing their spouses. You have to think about your well-being as well as that of your spouse.
Thanks for your input Janet. Today has been a little better and he has laughed over some things I talked about. He did mention once the woman that needed to sleep and I assured him that she was OK now. That seemed to satisfy him. I also tell him that God is in control and takes care of everything so He doesn't want us to worry. Sometimes it works!
I'm afraid I might be on the "standard line" that you mentioned about caregivers waiting too long. Just not sure I can face that at the present time.
Thanks again Janet. To all that have made this decision, I admire you and know that it must be one of the hardest decisions you've ever made.
If you haven't asked his doctor to recommend Hospice, please do so. Find a Hospice in your area, have them come to your house to see your husband and qualify him for Hospice. Being incontinent, unable to feed himself, to walk without falling - you need help.
With my husband, I used to walk in front of him (with me walking backwards) holding his arms close to the elbows to give him balance when he walked. Another of us would fill the spoon when it was in his hand and lift it to his mouth, and once he understood by that what he was to do, he could take a few bites, and sometimes finish the bowl. It may be time to have to feed him as I do my husband.
With Hospice's wonderful help, including a CNA that comes Monday through Friday and bathes, shampoos and shaves my husband, and an agency caregiver (that I pay for while I am at work), I am able to keep my husband at home. He has a hospital bed by his recliner in what was the dining room off the den, and he can see the TV and me and anyone who comes into the house. He has premier seating! <grin>
My husband is now in stage 7e, and I am glad to give any information on what has worked for me for those who want or need to keep their spouses at home. Many can NOT keep them at home, for their own health - physically it is very demanding. My situation has been slow adjustments and finding solutions to every problem that crops up, and having the ability to work full time has kept my sanity and paid the bills.
As I said earlier, if you don't have Hospice, call his physician and the local Hospice office as soon as possible. However, if you think it is time to place him, start looking today at the available nursing homes and find the one that you are most comfortable with and see if they have a few days "trial" or "respite" program to see how it works for both of you.
Would someone be kind enough to point me to where I can read about stage 7E? I've noticed that a number of people here refer to 7C and so on and I haven't noticed a stage progression chart this detailed before.
Thanks for the website, blueblaze. I'll check it out. We've been up most of the night! Its now about 4:00AM and DH has decided he needs sleep so I think I'm heading that way also.