DH gets up between about 2-3 am goes on porch to smoke (trying to quit so some of time now just goes out there). Then back in to get coffee and back out. Eats between 4-6, feeds cats at 5 and potties dog, back to bed by 6am aftr taking morning meds. Changes clothes on shower day, unless an accident. No teeth to brush, doesn't brush hair, has or is growing a beard. Sleeps until 10:30-1; up for meds and back to bed. Up around 3:30-4 for more coffee and time on the porch. Feeds cats at 5. Takes meds between 4-6. May eat anywhere between 5-8. Up and down between bedroom and porch like a yo-yo between 6-8 or 9, then back to bed until between 11-12. Porch is enclosed, but not heated. He has a room air conditioner as well.
He is able to be up when necessary or when he wants to--like Wed. to go to the store to watch the people and drink coffee. Getting his shower the day before is a condition of that trip.
We also go to the store on Sunday mornings, for his coffee and people watching. I use that trip to shop for the things I can't really have someone else get.
TV is seldom on right no, because even wit an amplifier for me, I need it on at least a setting of 7, and it disturbs the sleep of the hearing impaired man. I read or come here instead.,

Weejun.....This is exactly what was needed. I seem to "vent" about my days sometimes in order to get feedback on what is "normal" and to be expected. If I didn't interferre with John's personal schedule, he would sleep all day long. He gets up to take bathroom breaks....lately he hasn't had incontinence issues (I beleive he's had a UTI and had been given an antibiotic). He has no sense of personal hygiene. If he comes downstairs (with my help), he'll sit or lie on the couch. Sometimes remembers he needs to shave. LOOKS at the television but can't tell you what he's watching. Will not read any longer (don't know if he can and if so, certainly know he can't retain the words). Hunger? Sometimes he knows he needs to eat, sometimes insists he's already eaten. When he does want to eat, he WILL eat whatever I give him and sometimes quite a lot! If I didn't give him his medication, he wouldn't take it. When I give it to him he nearly always insists that he doesn't need it and is beligerant. Seems to be in constant pain (denies it to health professionals). Has no stamina. Is bent at a 45 degree angle and uses his walker at all times except up and down stairs, of course. Doesn't initiate conversation and when he does talk, he usually speaks with his eyes closed, like he's talking in his sleep. No "deep" or meaningful conversations here. He's cold all the time and always has to be wrapped up in a quilt. Long visits with anyone wear him out completely. Even the act of bathing, when I'm finally able to talk him into letting me do it, is exhausting. I have to MAKE him get up to accomplish any of the necessary things we need to do. Dr. or dentist visits, grocery shopping, etc. Sometimes this errupts into conflict....RARELY any cooperation about this or hygeine. Like Imor mentioned, his nose constantly runs clear.....probably reaction to medication, I'm figuring. He's forgotten his (extreme) love of Scotch and will sometimes share a glass of wine with me.

This is probably going to be longish, but thorough, in hopes that it may provide some insights and help for others following in our footsteps later. I’ll probably have to break it up into sections, so please bear with me.

Our day typically begins around 5 or 6 a.m. with the first of maybe a dozen assisted potty runs before the day is over. For this first potty call we use the bedside commode, as we may also have done for a previous potty call during the night, depending on what time I put her to bed. She has to be helped in sitting up and swinging her legs over the side of the bed, and then helped to stand and shuffle a couple of steps over to grasp a grab bar that I’ve mounted on the wall beside the bed. With her clinging onto the bar, I pull the back of her nightie up and sort of drape it over her shoulders, pull down her Depends – noting whether they need changing or not (they do about half the time), move the bedside potty up behind her and help get her positioned on it, and then tell her she can start peeing. I hand her the roll of tissue, and after she’s wiped she grasps the grab bar again (at my suggestion) and stands so I can pull up her Depends, pull down her nightie, move the potty chair back a foot or two and have her sit back down on it again and let go of the bar, and then assist her in standing and moving back over to the bed, where I pull the cover back over her and give her a kiss on the cheek – maybe going back to bed myself, or maybe going ahead and getting up – depending on the time.

She’s usually good for about two hours before another potty call, giving me the best opportunity of the day for a shower. After showering, I feed Lucy dog and walk with her down to the gate to fetch the newspaper, and then turn on DW’s baby monitor and place it on the kitchen counter while I make breakfast – usually dry cereal with bananas and blueberries plus a glass of juice for both of us, and a cup of coffee for me and water for her. I usually go ahead and eat, placing hers back in the fridge until I get her up sometimes between 9:30 and 11:00, depending on potty calls and how she feels. She always complains of being so tired – no pain, just tired, even after 15 hours of sleep, so it’s only my initiative that finally gets her out of bed. I assist her in getting out of bed and into her wheelchair that I’ve positioned close to the bed (this transition is getting harder and harder), roll her to the door of the adjoining bathroom, and assist her in moving from the wheelchair to the toilet, where she may or may not have a BM (if not now, then later in the day). While she’s seated on the toilet I usually brush her hair, and after she’s finished help her in standing and washing her hands – I have to turn on the water, squirt liquid soap into her hand, and show her the towel – all the while sort of supporting her so she doesn’t fall. Back into the wheelchair, where I put some manner of a light robe and slippers on her, then roll her into the breakfast room, where we go through another transition in moving her from her wheelchair into a dining chair that we’ve fitted with caster wheels to simplify sliding her up to the table. Put a bib on her, (always referring to it as an apron), place a small medicine cup containing all her breakfast pills in her hand, and suggest she go ahead and take her pills while I get her cereal and juice. She sometimes asks where her water is (it’s right there in front of her), and usually ends up leaving two or three pills in the cup, which I subsequently place in her mouth myself. She eats Fiber One with dry oat bran and Benefiber on top, and prune juice, hoping to keep her “regular”, and some days she eats it all and other days only a few bites and adamantly refuses to eat any more, insisting that she’s already done that. The signal that she’s “done” and not going to eat any more is when she begins swishing water noisily in her mouth and then probing the far recesses of her mouth with a forefinger. All this with her eyes closed most of the time.

After breakfast I assist her in getting up from the table and shuffling the few steps over to her recliner, prop her feet up and lean her back, maybe covering her legs with a light throw, and hand her a tooth pick – which she seems to enjoy using. After ten or fifteen minutes she’ll insist I come and take the tooth pick, and then maybe she’ll doze for an hour or so until needing another trip to the potty.

She can still read words, but certainly wouldn’t be able to read a letter or magazine article and get any meaning out of it. She still remembers her social graces – recently saying, after receiving a new nightie from a great niece, “I’ll have to write her a thank you note – but I don’t have her address…” The last time she tried to sign something, I had to tell her what to write, and the scrawl was almost illegible. She struggles for words sometimes, but her vocabulary is mostly intact – even surprising me sometimes with a particularly well-chosen word. She still has a sense of humor, even laughing out loud sometimes and making silly facial antics. She knows and frequently mentions that her memory is mostly gone, but has probably forgotten the name Alzheimer’s that she used to tell people she had. And, thankfully, she never was really curious about or aware of the implications of Alzheimer’s beyond just memory problems. Always cooperative about taking whatever medicines I offer her, and, happily, no problems with anger or rages or hostility – and no need for any mood altering drugs thus far. Increasingly, she doesn’t know who I am – sometimes tending to confuse me with Reverend Jeff – the Haitian hospice chaplain who comes and sings and does bible study with her every week – that’s the big thing going on in her life right now, and she asks about him several times every day. (Last week he gave her communion and she noisily swished the communion wine for about thirty seconds, as she does all liquid – Reverend Jeff admitted that was probably a first for him… With his permission, I captured all that on video – humorous, but sad at the same time.) Like so many others have reported, my DW is able to brighten up and act gracious and almost normal (except for swishing the wine) for company, but the effort wears her out and she needs to resort to her quiet bedroom sanctuary afterwards.

So what have I left out? I’m so fortunate in having our 53-year-old unmarried mental health counselor son back here living with us and helping out for the duration – I couldn’t handle things without him! He’s probably better at “living in her reality” and cajoling her into a good humor sometimes than I, and having him here allows me the freedom to run errands or do yard work or get out socially when he’s home. He moved back in with us about ten months ago, when he realized that I was about to become overwhelmed with my DW’s rapidly deteriorating condition.

We started noticing problems about ten years ago when DW was 73 years old, consulted a neurologist and started on Aricept in 2001, official diagnosis of probable late onset AD in 2002, gave up golf in 2003 and driving in 2004 after several episodes of getting lost. Gradually gave up banking, housekeeping, cooking, hobby activities, etc. as time went on. Through most of 2007 we were still walking three miles every day, going out socially, etc. Twelve months ago she was still able to attend Sunday school and weekly bluegrass jams, with a good bit of assistance. Six months ago was the last time she left the house in the car – to get lab work done. At the recommendation of our PCP, he asked for a “hospice consult” three weeks ago and she has been under hospice care ever since – and we’ve been very happy with the whole hospice experience

It is my understanding that Hospice can provide services as long as there is continuing decline and therefor can care for Dementiapatients longer than the few weeks or months. Thjere are periodic reevaluations, but as long as the decline is at a certain level, severe, and continuing to decline, they cn beon board.

Thanks, I'll talk to them.

A friend, Maureen's, mother has had Hospice care now for 18 months. Maureen said her mother is re-evaluated every six months and as Gourdchipper said, if her decline is obvious they renew. She is in a hospital bed and cannot even feed herself. The point I am trying to make is that they have not cancelled their services and no one expects them to. They've told her not to worry, they''ll be there till the end. A Godsend!! to Maureen.

My husband has been on hospice care since April of 07 with a steady decline. Some well meaning foks claim that it can't be-but it is.

How low down, StuntGirl -- I'm game!

Gourdchipper, you should ask Hospice to bathe your wife. That would be a great help for you. They came 5 days a week to give my Mom a bath and wash her hair. You can ask them that often or less as you desire. They will also brush her teeth and fix her hair and settle her back in her wheelchair and make the bed. Change it as often as you want or need it changed. Please ask them to do this for you. I posted the other day on a easy way to get them out of chairs, beds and wheelchairs/

Gourdchipper...please be careful with your back....I try to lift my mom when she cannot get up, and it nearly fractures every disk in my back...my dw is only 110 lbs, but that is heavy when it is hanging on you...I slipped once with her in the shower...thought I ruptured 25 discs in my back...If you can, try a second person....much easier..also, nurses can give you pointers on lifting or moving patients....I think you may already learned how, but be careful please.

I'm a pretty tough old bird, phranque -- what's the expression, strong back and weak mind -- or was it the other way around? Anyhow, I'll probably be opting for cataract surgery within the next month or so, in which case I'm sure I'll have to go easy on the lifting for a few days. And I'm about ripe for some hernia repair surgery too, but I'm hoping and trying to put that off until the need for lifting has passed -- whatever that means. I've had to call on our son a couple of times to help me out with awkward lifting situations, but the truth is that the old man can still out lift him!

Weejun, don't you believe most of us feel agape love for our spouses. - just as we felt toward our babies and very young children. I wrote down your quote re: "Love Is An Action Not An Emotion" and have shared it with friends. I might needlepoint the quote this winter when I pick up the needle again and frame it. So sweet.

My DH has Lewy Body Dementia, is 51, and his first symptoms appeared in the 2002-2003 time period. The doctors say that on a scale of mild-moderate-severe, my DH is on the border of moderate-severe. My DH's earliest symptoms were decision-making, problem solving, cognitive processing, and sleep problems. The example we now use to identify his early symptoms relate to his difficulty with paying the bills. By 9/08, my DH was tested by a neuropsych evaluation. The conclusion was that my DH's memory impairment and executive dysfuction should be considered quite severe and his overall cognitive impairment is moderately severe.

On a typical day, my DH sleeps until around 11 am. When he gets up, he comes downstairs and sits on the couch. Right now, he often gets himself a cup of coffee, but that is changing. When my MIL is not here, my DH will make himself a bowl of cereal and leave the bowl on the end table. He has been forgetting to drink over the last couple of months so the coffee cup he makes when he comes down stairs often sits half empty. I regularly bring him different drinks and encourage him to drink. Most of the time, I need to remind my DH to take his medicine and to remember not to chew his pain medicine. If my MIL is here, she will fix him grits or something else for breakfast. My MIL also helps to remind my DH to drink.

My DH mostly watches TV. I call it sleep watching because he sleeps as much as he watches TV, dozing on and off. It is not uncommon for my DH to moan loudly in the middle of a TV show that it looked like he was watching just moments before. It took some time, but I finally determined that he is dreaming and the moans are from things happening to him in his dreams. Sometimes, my DH will go outside in the back and sit on the porch. I have to remind my DH to take his afternoon medicine almost 100% of the time.

My son and DIL live with us, but I am now the person who does the most cooking (my DH was the primary cook). My DH helps with cooking, but hasn't cooked a meal alone in months. The last time he tried, the food was really not cooked right (think - newby cook and you have the idea). My DH tends to stop doing things when he has difficulty doing it once or twice, but he sometimes wants to help and I encourage him to do so (but watch him closely). At around 7 pm, we eat. Most of the time, my DH eats on the couch watching TV - even when everyone else is eating in the dining room.

Around 9:30 pm, I give my DH his evening medicine with water. Around 10:30 pm, my DH walks (slowly) up the stairs. I handle getting his oxygen generator and VPAP ready for him to go to bed, place his mask on his face, get him centered on the bed, put on his sleep music on his IPOD, cover his head, and tuck him in. I rotate praying with him, reading a simple card and note from me, talking to him about the positive things that happened that day, or listening to his concerns and helping him find peace.

Most of you are probably wondering about the whole toileting and bathing aspects since I haven't mentioned it. Well, my DH is currently still managing to handle going to the restroom alone (only sometimes forgetting where it is). I personally think the fact that the LBD seems to be slowing down his digestive and urinary processes makes it easier because he doesn't go very often. He never had daily BMs (like most of us) and had a large bladder capacity. Now, with Dulcolax/Senekot-S, he has a daily BM on most days. When the Uroxitral stopped working alone (it's a medicine for enlarged prostrate), they added Flomax (he was retaining too many fluids and was bloating terribly). With both medicines, my DH seems to be ok. Of course, he has admitted that he sometimes starts to urinate before he gets to the bathroom. I bought him dark underwear so that it doesn't show if he has a small accident. I did notice that he changed pants yesterday for apparently no reason so ... maybe things are going south in that area.

On a good day, my DH will bowl on the Wii for a little while, shoot a game of pool, or go on a walk. As with all of the dementias, my DH will perk up when others come around and engage in lucid discussions and, also like others, he then goes for days sleeping more and being less interactive. On occasion, my DH surprises all of us with his insight and clarity. Then the fog returns.

My DH had experienced visual and auditory hallucinations that we were able to manage and eliminate with medication. We gradually reduced the medicine as low as possible to help him be as clear as possible while not hearing voices or seeing things. We got him down to .5 mg of Risperdal and 300 mg of Seroquel. Last night when I was putting him to bed, my DH told me he has been hearing voices and seeing things again. This means we will have to increase the Risperdal and/or Seroquel, which will make him more foggy, less interactive, and more sleepy.

I almost feel bad telling you about our typical day because my Dh is not nearly as dependent as so many of you. However, here goes: We usually are awake around 6 a.m. Coffee is made the night before and it's done just a little after 6. Sometimes DH goes down and gets the pot and 2 cups and brings it back up; or I do - whoever gets up first. We spend the next hour drinking coffee in bed, talking, sometimes watching the news, etc. He always wants to know "what's on the docket for today". I shower and get dressed while he is still in bed; then he gets up, showers, shaves, gets dressed. If we are going out anywhere, I lay out his clothes and he gets dressed. I eat breakfast while he is getting dressed. he comes down with our dog, Millie, and takes her out for a walk. When returns, he fixes his own breakfast (unless I'm cooking a big breakfast - not often). After breakfast, he does crossword puzzles - at least 3. I do whatever - during that time (am usually on this board!) Then we go out - somewhere, anywhere - he loves to go to Lowes and they all know him now, so I don't worry about him getting lost. He can't use his cell phone anymore, so I have to watch him in the stores. But I just sort of follow him at a distance. If anyone needs to know where anything is at Lowes, just ask me! Then we will stop somewhere for lunch, or come home for lunch. He then takes the dog out for another walk. Then settles in his chair with his laptop and plays his golf game until around 3-3:30. He never naps. So, from about 1-3:30 - I'm on my own. Today, I went to get my hair done. I can leave him for 2-3 hours with no problem. He can still dial the land line phone and will also answer it, but can't remember who called. He then will watch NCIS from 4-5. We have a glass of wine around 5:30 and I fix dinner. Eat around 6:30. Then he watches TV downstairs until around 8- 8:30; then comes upstairs to the bedroom. Gets ready for bed, and watches more TV until around 9-9:30 - then goes to sleep. Sleeps very well, up maybe 1-2 times for bathroom trip. So.....that's our very boring day! Of course, in-between all this - I do have to answer the same question 10 times in 5 minutes; or he has lost something that we have to go looking for. But, generally speaking, he does very well and most people would never know anything is wrong. Only when we are away from home in a different environment does he get very agitated and upset. So......no more trips for us. As long as he is home, no stress on him, he does fine - and as a result I am doing fine. He is 86, I am 69 and no, I didn't think twice about marrying him. He was and is the love of my life. He tells me everytime I go near him how much he loves me and appreciates what I do for him. He does get frustrated and angry sometimes when he tries to do things he used to do and can't. But he does vacummn, chops veggies for me, sets the table, removes the dishes from the table and puts them in the dishwasher. No...not like I would do it, but the job gets done so that's okay. He will unload the dishwasher - and I have to look for things, but that's okay too. It eventually shows up! We are in our 6th year of this journey and I just pray to God that He will take him before he advances into the latter stages.

I salute all of you out there who post here and have to go through things so much more difficult than I do. You have all been such a great comfort to me - and I may still have to go further down this road.

Vickie - I totally agree with divvi! Just to have my DH really and truly have a conversation with me like the old days would be so good. I know how hard it is to feel like it is good when it feels so bad to see your DH slipping away. Try to fight off the images of the future and what it might hold and the memories of the past that cast a shadow on your present and focus on the right now, right this minute, the small conversations, the soul-level recognition of who you are (more than a caregiver), and the simple connection you feel at different times. Cherish them and try not to look back or forward. No one knows what the future holds for each of us. Like you and probably all of us, I hope my DH stays as clear as possible and as content as possible until the day he passes from this world to the next. I really try to take this advice and, for every moment that I have, I am very grateful.