Since Robert has been on the Exelon patch and Namenda, he has regained some of his functioning. It is causing me to wonder does he really have AD? Is this just him coming out of a severe depression? Will he ever be 'normal' again?
So, I want to list some of the things that he can do and compare notes with you guys.
Robert can: - remember doctor's appointments and schedules in general. - knows everyone's names (i.e. family members, long time friends, prior co-workers, etc...) - bathe himself, dress himself, remember to take his medicine if I have it dosed out in the daily boxes. - drive - fold towels, operate the dryer - take the trash out if prompted - watch tv (he's even getting better at operating the remote controls) - mow the lawn/work outside with his dad - heat up a frozen pizza
What he can't do: - organize anything - either his daily activities or his underwear drawer. If he stays home to "get some things done around the house" nothing happens - put his clothes away - he stuffs them all in his closet floor - understand the bills that come in or pretty much anything to do with money (he still opens them all and thinks that we are one day away from bankruptcy) - deal with our son without yelling at him - call and order pizza - follow a fast paced movie or conversation
I want to celebrate what he can do without getting my hopes up that he is going to be healed. At the same time, I don't want to totally rule out the possibility that he could be healed "with God, all things are possible". I just wish that God would let me know exactly what His plans are for Robert, the kids, and me. I guess this is where trust and faith come in.....
Your husband's situation sounds similar to a friend of ours who is in the Florisam (sp?) trial. After a few months on what we are all assuming is the drug, and not the placebo, he came out of his fog. He is able to do the following tasks he had lost the ability to do:
-Carry on a conversation, and have the ability to tell people that his processing is slow, so just give him time to get his thoughts in gear and out of his mouth. -Make appointments on the telephone and take messages accurately. -Follow a conversation -Remember names -Read newspapers
Remember the Alzheimer Slogan - "If you've seen ONE person with Alzheimer's Disease, you've seen ONE person with Alzheimer's Disease, which simply means that the disease affects everyone differently. But it does seem that certain medicines work for certain people.
Our friend's wife says that she is thrilled to have her husband back 75%; does not hold out false hope that it will be forever; but is going to enjoy each extra day she has with him, and leave the rest to God.
Leighanne wrote: "I just wish that God would let me know exactly what His plans are for Robert, the kids, and me."
Don't we all. Sometimes that feels like the worst of it. How's this going to go, and for how long? Especially bad if you're a J on Meyers-Briggs (i.e. DON'T have a wait-and-see type of personality.)
Hope springs eternal, doesn't it? Sometimes I look at how Jeff is doing and think maybe he'll plateau here forever and ever. Then I think, do I really want him to? Then I really think: I just want to know what's going to happen? Is that so much to ask? And the answer seems to be "yes."
The list of what your husband can/can't do, seems pretty normal to me. Normal, that is, for someone in early AD. Jeff has improved in some areas since having been on meds for the past 8 months, but only to a degree and holding.
The limitations like dealing with your son without yelling, and following the movie/conversation are typical cognitive impairment things, in my experience. Whether or not anyone's particular case of cognitive impairment is REALLY AD, and will REALLY progress is the great unknown, but since most of the time it is, I guess we must carry on with that assumption all the while living in the day and moment.
Personally I just pretty much yelled at god last night. Didn't help me much, but I think god was ok with it.
Leighann, this is a great topic for discussion. We all tend to dwell on what we have lost, what our LO can no longer do so it's really a worthwhile exercise to write down what they can do. These are the things my husband can still do ( and I will probably forget lots): Get himself up, shower, dress, totally take care of his personal needs though he often asks what he should wear Usually remember names of close relatives Use the tools in his woodwork shop and repair some things gardening and yard work with some direction help me with cleaning, clear the table do new ballroom dance steps after much repetition and with me showing the steps each time we have to do them usually remember to stake his medication that I have sorted out for him turn on TV though if he accidentally put the cable out he can't put it back enjoy Italian programs and soccer as well as some of the British shows we have watched for years. He actually remembers the characters very well. participate in a limited way in conversations- mostly just listens enjoy travelling The things he can't do are and that cause confusion: Drive- this after he got lost going to his brother's and twice being confused by a red stop light. He still thinks he could drive but we got rid of one car and I just automatically do all the driving Handle finances Make phone calls or take messages accurately Initiate activities Planning of any kind Rarely able to tell time unless it's on the hour Read and retain what he has read Show empathy- if I'm sick he finds a reason to want to go to the doctor too I'm watching to see if there are any changes now that he is off Alzhemed but so far so good.
As I read your comments, Inge and those of others, I see that we are farther along the road. Gord still drives and doesn't have to be tested until February. He does shower, dress and do all the other grooming things with no help. He can vaccuum and do the dishes if asked. He still knows where most of the dishes and cutlery goes. We can still laugh at silly things . He is still more compassionate about our kids' problems than he was years ago. I hope there are other things but I can't remember.
He couldn't do finances but then he never has. He forgets me on and off and our kids. He doesn't know how to get anywhere. He frequently thinks we are "up here" rather than in the same apartment in which we have lived for 43 years. He now remembers that his mom and dad died 5and 17 years ago respectively but suddenly needs to handle their financial affairs. For him one program on TV blends into the other including the ads. He reads the same books over and over. He rebuilt a car but now I worry that there might be something wrong with the car that he wouldn't notice. I now remember oil changes. I don't like this list.
Gord started on Aricept in 2003 and was on that for a year. He then went on Exelon which he has been on except for the year when I insisted it worsened his depression. He is now on Ebixa or a placebo and will be on Ebixa for sure in about January when he study is over for us. As we have had several bad days recently, I am now praying that he is on the placebo.
I'll have to watch out for the depression and Exelon thing. Robert certainly has a tendency to get depressed. We had a bad night last night. When I picked him up he was in a 'I want to fight' mood. That is always followed by the 'I want sex' mood. I tried to avoid both, which caused a major pouting session. He slept (most likely didn't sleep) on the couch last night and said this morning that it was because he knew I didn't want him in our bed last night. I had gotten up to take some cough medicine and apparently in doing so I silently signaled him to sleep on the couch.
This morning he did something to the cat that caused her to scratch his hand bad enough to draw blood. He then starts telling me that we need to get rid of her. Maybe we should and get rid of the dog while we are at it. They're both scared of him. The cat has never scratched me bad enough to draw blood (even when I took her to the vet). It might be better for both animals if I found them other homes. I don't know.
My DH can go get the mail, forget he got it, and go again. He can put away clean clothes, put if the drawer is crowded, he will leave them on the bed. He takes his meds. I follow up to be sure, because sometimes he forgets. He can make coffee and cook an English muffin, unless he forgets it is breakfast time, because then he has his lunch. He will take out the trash if I convince him that, yes, the trash pick up is tomorrow. When we go to a familiar restaurant he knows where the rest room is and uses it repeatedly. He knows people he worked with 40 years ago, but will forget someone he has just met. He knows his parents are dead, but does not remember extended relatives from his past. He doesn't drive, but can tell me how to. He always remembers if we due to go to his Alzheimer's group. I think he really likes that. When we went to the beach recently with our daughters and their families, he was disoriented and sometimes upset by the noise. When we are in crowed situations, sometimes he will get separated from me. I get panicked, but he does not seem to get upset. He does well at home, but follows me around and needs to see me at all times. He cannot remember that I have some medical needs and I get concerned if I should have to have surgery, because he will not only be not help, but will have to have someone to care for him.
Diane, yes, thank you, I guess this was it; I had thought there were more posts. I think my DH is stage 4 (maybe 5-ish: what do you think?
He can: Shave (he likes to), shower (he doesn't like to), brush teeth Take medicine if I open the correct compartment. Wouldn't remember it on his own. Fix himself cheese (or similar) sandwich for breakfast or lunch, setting the table with the right utensils Help load or unload dishwasher Pour soda, wine or beer etc. for company (but often will have several wine bottles in the go) Find himself an ice cream bar in the freezer, raid the refrigerator or cupboard looking for goodies Close and lock doors and security gate (he does it all day long but often forgets to check them at bedtime) Help hang or take down clothes (only if I'm there, too) Turn TV on and watch it with apparent interest Get the mail or paper in, Read newspaper and magazines with apparent interest and cut out pictures or articles that strike his fancy Drives very well (but not often, seems to be forgetting about the car) Ride a bike, does well in city traffic, likes to go fast. Finds his way to familiar destinations. (Today to the street in Rotterdam where he was born; that surprised me) Pay cash in a restaurant (fumblingly, but he likes to pay so I make sure he has an appropriate amount) Go alone to the barber shop or bike repair shop where they know him. Come and find me almost anyplace in the village to see whether I'm ready to come home (at the hairdressers they invite him in and give him a cup of coffee; other places he will see my bike or car and be satisfied that he's found me and go back home) Mow the lawn (by bits and pieces, not more than 20 minutes at a time) Pick raspberries, cherries, blackberries (not strawberries, doesn't like to get down that low). When we go out, remembers to take keys, gate opener, camera, wallet, watch, reading glasses Take photographs Mail a letter, or deliver something to house of good friends or his brother who lives close by. Goes to bed early, by himself. Count out seven pills of each kind if I give him the punch-out cards. Talk on the phone if I dial for him. (Will not answer phone if I'm at home, can't be trusted to take a message)
Mine can't do ANY of the above. He can get himself to the bathroom once or twice a day (but usually his depends are already damp). He can sit himself in his chair. He can walk down the hall with his walker and sit in the glide chair and ride up in it to the second floor. He can recount what he's seen on the TV, vividly, with intelligent words, but making no sense at all most of the time. He can feed himself and drink his wine and swallow the pills I give him. He is usually in a pretty good mood. He cannot dress or undress himself or do a good job wiping himself, though he tries.
BUT: He can laugh at funny things on the TV, and smile at me. Sometimes he remembers my name. Usually he remembers to say thank you to my daughter or me if we help him do something. He can remember, if not names then details, about friends he hasn't seen in years (i.e., a friend's husband used to work for Eastman Kodak. He died at least 5 years ago.) He can step into the tub and turn on the shower and let the water run on him. He is not unhappy, or aggressive, and neither am I.
Mine can brush his teeth if I put the toothpaste on the brush for him. He can also shave himself and comb his hair. He can get dressed as long as I put out the clothes. He'll take his meds that I put out, although half the time he will insist that he already took them. I have to stand in the bathroom doorway and make sure he washes up good. Can't get him in the shower very often tho. (Pick the battles) He doesn't drive anymore. Doesn 't read at all, can't comprehend what it says. He doesn't remember how to turn on the tv anymore. We've lived here for 20 years and sometimes he forgets where the bathroom is an I have to tell him. He still loves to dance which makes him very popular at the day care center.
Mine can: Shave,shower,brush teeth Takes his own medicine, but I prepare it in the pillbox for the week Makes his cereal for breakfast, sandwich or microwaved pizza for lunch He sets the table correctly and clears the dishes afterwards. Loads and unloads dishwasher but can't start it, and puts things away incorrectly. Close and locks doors, but I do re-check them before bedtime. Turn TV on/off most of the time, although screws up the remote a lot Gets the mail, newspapers. Doesn't really read a lot in the paper, but does the crossword puzzles. Does not drive. Pays cash in a restaurant but I sometimes have to help with the tip amount. I take him to the barber shop and drop him off and pick him up - they know him. Goes to bed early by himself. Takes dog for walk Vacumns Trims hedges Dresses himself - but I pick out the clothes if we are going out anywhere
AND....asks the same question 10 times in 30 seconds! LOL
I guess my DW is farther along. Starting in the morning:
I get her up and take her to the bathroom, be sure she pulls the Depend down, usually have to change it, wipe her butt after BM. Put on Exelon patch. Get out clothes and help her dress, put on socks and shoes. I get breakfast, grind her pills in apple sauce. She will eat by herself, but needs encouragement to eat the apple sauce. If we are going out, she will walk with me, holding my hand. If we are staying home, she settles in her recliner chair and goes to sleep. In evening I have to cut up any meat (I usually order fish, etc. that I won't have to cut up). Before bed I grind her pills again, put them in apple sauce, and have to encourage her to eat it. If I don't say anything she will just stir it for a long time. I haven't let her go to see how long. I get her undressed for bed, put toothpaste on her brush, and encourage her to brush. See that she pee's and put on clean Depend (or now the overnight underwear - see "Incontinence" thread).
She used to be an avid reader. Now cannot read at all. If she says anything, it has nothing to do with what we are doing or what I have said. Sometimes I can't figure out what she is saying.
On the plus side, she is very cooperative and very pleasant. She seems to know who I am, and I think she knows the kids. She seems to enjoy seeing the kids and grandkids. Today in church there was a woman we have not seen in several years. When she greeted DW she gave her name and asked DW if she remember her. DW replied "yes", but I'm sure she was trying to cover up her problem.
Vickie, sounds like your dh is at about the same stage as mine, except for asking the questions. Siem doesn't do that (yet). Just recently, though, when he has insisted on going somewhere, he'll ask when we're on the way "Where are we going anyway?" and "Why are we going there?". This is new. But he'll usually only ask it once and be satisfied with the answer.
They do seem about the same, JeanetteB. And, I know I don't have it nearly as tough as so many on this forum. My heart aches for them all. We don't have much to look forward too,do we?
I don't mind reading about the advanced stages. You're right, Vickie, we don't have much to look forward to, but I think it's good to be prepared. I might be sad when he starts talking to the guy in the mirror but I'll know what's going on and I'll know how to deal with it (or how to look up the info on how others have dealt with it)!
What a great toppic. Very uplifting an positive thinking. I'll have to think a while before I respond. DH can do quite a bit of stuff (I think) if he will do it.
My DH can express himself very well most of the time. He was just coming through the den where I am, stopped and reached down and kissed me and then said, "I go through a lot with this disease, but no one will ever know what YOU are going through. Thank you, I love you." Now I'm crying.
My DH is in Stage 6..and we've been on this journey for many years. Vickie, he NEVER, NEVER, EVER said those words to me... You are indeed blessed. Oh, he says "I love you"...over and over... often in response to something totally different, off subject..and the words often seem like a recording that has been looped to play over and over. There is no romance in the words when he says them. I feel sure he does love me and he knows, beyond a shadow of a doubt, that I love him. It's hard to explain, but suffice to say, it's a different kind of love we share.
Vickie, how wonderful that he could say that. My DH will never admit that there's anything wrong with him or that I have anything out of the ordinary to contend with.
My husband is like Marsh's wife, except in addition, my husband doesn't talk, answers yes to almost everything whether it is the correct response or not. I need to help him get out of bed, get out of his recliner, get out of the car; sometimes he's unsteady on his feet and leans on me or has me hold his hand, and other times shuffles okay; he's losing the ability to eat with a fork now; and sometimes he is in a daze and doesn't know what is going on around him. I now have Hospice at home care for him. I don't like this stage (however, I don't like ANY of the stages!) because it means he's close to being bedridden.
Nikki, sounds like you're doing a great job and Lynn sounds like a great guy. Love the smart ass replies! Also interesting about the children's puzzle. I'm going to get some out.
He can remember how to drive to the plumbing store, buy a new sprinkler head for our underground sprinklers, dig up the old sprinkler (all tasks) but not be able to make a decision on which sprinkler "tip" to put in the sprinkler head. He has installed sprinkler systems in the past. He called me to help him make the decision. I told him to compare the tip in the bad sprinkler and pick a tip (you get a large card with different size tips when you buy the new sprinkler) that looks the same size. He was so confused that he was almost in tears. I told him that if he couldn't decide that I would pick one when I got home from work.
This is such a good example of the reasoning button being broken. FTD.
My husband can do all of ADLs but will get upset by out of state license plates. Wants to know why they are in his state. What are they doing here? He can snowblow in the winter but completely lost it when the plow came by and put snow at the end of our driveway.
You look at him and see nothing wrong until he opens his mouth. He cannot hold a conversation, he just makes observations about what he sees. No insight whatsoever
Continuation of the sprinkler story. When I got home from work last night, the new sprinkler was installed with the new tip. I didn't mention the tip but mentioned that it was so good that he got the sprinkler in. on the table was a magnifying glass next to the card with all the other tips. I'll bet he spend at least an hour trying to figure out which tip to install. My, how their heads must hurt putting that much effort into a small decision.
Deb, I was wondering what ADLs means. my DH also gets "ticked" at out of state license plates. It can really cause him to get worked up. Also, snow plowed over the end of our driveway. Sometimes the smallest things can cause a two-hour rant.
A person who needs help with ADLs can be evaluated by a social worker or qualified professional at an assisted living facility. Social workers and geriatric care managers will determine the elderly person's care needs, find appropriate services, and track that person's needs as they change. There are six basic categories of ADLs:
* Hygiene (bathing, grooming, shaving and oral care) * Continence * Dressing * Eating (the ability to feed oneself) * Toileting (the ability to use a restroom) * Transferring (actions such as going from a seated to standing position and getting in and out of bed)
In an assisted living facility, the amount of help one needs with ADLs determines the resident's needed level of care. Typically, the cost of care for each individual is based on the level of care he or she requires. To learn more about costs of care and how they are determined by assisted living facilities, click here. Instrumental Activities of Daily Living (IADLs)
IADLs are more nuanced and complex social activities than ADLs. IADLs can include, but are not limited to:
* Finding and utilizing resources (looking up phone numbers, using a telephone, making and keeping doctors appointments) * Driving or arranging travel (either by public transportation, such as Paratransit, or private car) * Preparing meals (opening containers, using kitchen equipment) * Shopping (getting to stores and purchasing necessities like food or clothing) * Doing housework (doing laundry, cleaning up spills and maintaining a clean living space) * Managing medication (taking prescribed dosages at correct times and keeping track of medications) * Managing finances (basic budgeting, paying bills and writing checks)
Many seniors who live independently can perform most or all IADLs sufficiently. Difficulty in performing some IADLs can indicate that more help is needed. In this situation, it is common for family caregivers to lend assistance with tasks such as managing their loved one's medications or bill payment. Remaining at home is an option if the elderly individual needs help with just a few IADLs and can be assisted by family caregivers or homecare aides.
I've been looking back at my previous post, just three months ago. In these three months he has LOST the ability to: - count out pills. At a given moment he refused, wanted nothing more to do with pills, so then I started filling his boxes once a week after he went to bed. I think all the different pills got too confusing and scary for him. - take his own pills. The boxes were confusing him, so now I take them out of the compartment and put them in a white dish beside his breakfast or supper plate. He can get his own glass of water but I usually provide it, because then he'll usually take the pills without any prompting. - go to bed by himself. Now he wants me to come along, turn down the bed, turn off the lights for him. I don't mind, it has become a comfortable little ritual and I get everything in the bedroom ready so that I can easily slip into bed later without disturbing him. - he doesn't drive anymore but that's because the keys to his car are "lost" and I don't really know why but he has never mentioned that they are gone or seemed distressed by this fact. When we go somewhere by car he assumes that we're taking my car and that I'm driving. - he no longer pays in restaurants, but always tries to give me all the money in his wallet so that I can pay - he doesn't seem to read anymore, and seldom cuts out a picture even if I point out things that might interest him.
thats does seem rather fast jeanette. he has FTD right? things seem to move quicker with this variant. i am so sorry he's declining.
like you, i have also seen weakening and losses over the yr. my hooligan has lost his steam and doesnt go round much anymore talking to the statues or himself in mirrors only if i guide him past them does he smile and wave. if hes having a really good day he'll walk around for a few minutes and 'visit':) always gives me a smile--
and all the B**** i did about the peeing over any and all places has stopped as well. now he rarely goes outside the depends.:(
i told yall at one point even the stuff we used to gripe so much about would be remembered as the 'good ole days' .. its so true.
seems we are seeing alot of our spouses here in a quicker decline this year. no slowing the monster.
DIVVI, I can just see him greeting the statues. How many have you got?
Still not sure about the FTD, neurologist has not gotten back to me with results of the blood test and I haven't contacted him because I'm in no hurry to schedule the spinal tap. Letting it rest for now. Doesn't make much difference anyhow.
we have some very large 'face' statues that are eye to eye on pedastals -mostly modern art types.
its quite disturbing to see your spouse carrying on a vivid conversation with a statue). but like all things AD - no explanations necessary. just love them the way they are and go with the flow.
are they considering doing the spinal tap to ensure there is no other reasons for the memory loss or testing the fluids? they wanted to do this on DH and we discussed and decided against it but by then they had already decided his was Vascular dementia and showed scarring from previous strokes - hope its negative. divvi
I found this posting to be very interesting. My DH has Lewy Body Dementia. On a typical day, my DH can do the following:
-take his medicine from his daily container (but does not take his pain medicine in the afternoon even if his pain level gets high and he forgets on occasion so I check every day); -brush his teeth in the morning and at night; -take a shower when prompted (though I do sometimes need to remind him what steps to take); -go to the restroom alone (he sits when he urinates so missing hasn't been a problem until recently when he still missed even though he was sitting down); -shave with an electric razor on occasion without being reminded; -fold clothes (though they are not folded right or correctly matched, it still gives him something to do); -make coffee in the morning (we still make his drinks and have started to have to put his drinks in spill proof cups and glasses - he was spilling regularly); -watch and follow simpler shows (e.g., HGTV is the channel he watches most of the time); -forage for food (he's a big snacker); -make popcorn in the microwave; -fix his Mirolax, but often cannot remember whether he actually took it; -help with small handyman things on a good day (mostly telling what should be done - he was a commercial construction professional); -hold his grandbabies when he is sitting down and sometimes talk to them; -sometimes make comments about what is happening in a television show (though he has difficulty following most shows); and -get up and down from the bed and couch (but he needs help with his VPAP and oxygen machine, though that is to be expected).
There are other things that he can do, but I actually cannot think of any of them right now.
On the other hand, most of the time, my DH cannot: -dress alone because of his coordination and his weight (it is actually dangerous and he gets very out of breath); -drive (though he reads road signs and tells me every time he sees a cop/trooper); -clean his feet or groom either his hands or feet; -fix himself anything to eat (other than snacks) - he was the primary cook in the house for years; -eat without spilling food on himself; -think of what he would like to eat or to do; -actively participate in a conversation (he can answer questions, but he rarely starts a conversation); -tell you what medicine he is taking or for what purpose; -tell you what he is thinking most of the time; -clean the house in any way (he can't even make the bed); -read; -do bills (or even really know what our bills are anymore) - he has no interest in the mail or bills or anything like that; -eat without making a mess dropping stuff on himself; -joke; -call anyone, though he can have a brief conversation on the telephone with our closest family members; -he has lost his sense of the passage of time and the degree of his impairment; -leaks sometimes, though he had difficulty urinating and is constantly constipated; and and so many more things than I can begin to say.
However, my DH never fails to tell me that he loves me.
and as long as they can do that, Sharan, it makes up for a lot.
Since I posted at the top, he now doesn't attempt to wipe himself or to turn on the shower himself, and he needs coaching to get in and out of the stair glide chair. Otherwise not too much change.
Art can still drive, park and set up the RV although he misplaces wrenches which he needs and that frustrates him. The more frustrated he gets the more stressed, the more stressed the more he forgets. He was exhausted physically and emotionally yesterday after breaking camp, driving and setting up. We put the setup of the satellite until this morning. After doing it he was exhausted and this was one of the easiest setups he has ever had. He is now in bed napping which he has been doing for the last 2 1/2 hours. I want to believe a big portion of his exhaustion has to do with the CPAP not working right so he is not sleeping well. He still can do most all the daily personal care including getting his cereal, making his lunch and snacking. I do separate his pills into the morning and evening doses and have to check that he takes them. His routine is breakfast then pills. If he gets distracted he will forget the pills.
He repeats constantly and forgets what was said causing more repeating often saying repeating the same things immediately.
This trip will probably be our last except for occasionally taking off for short trips. I will be able to tell more as the days progresses as to whether he goes out and visits with the other RVers. He uses to all the time, but so far has not. I am letting him sleep today to catch up as i feel he exhausted himself yesterday with so much change.
In many ways he is high functioning, but his physical stamina seems to be highly compromised.
Checking against the "stages" list I would have to say that DH has regressed to a pretty solid stage 5, except that he can still do the arithmetic (counting back) tricks. (Till now I've thought of him as a weakening stage 4).
Some of the things that my dh can still do are: preform his morning toiletries and get dressed when he can figure out where his things are. Signs help when he recognizes them when he reads them. make coffee, again, when he finds the kitchen and coffee pot and items needed. plays the computer games, the few he knows put things away when told where they go or brought to the room they go in. pressure wash the carport and house. He really enjoys this. Just needs to be directed to where the items are. sweeps and mops does the laundry but needs to be reminded every few days. He is still mobile but looses his balance alot. Things my dh can't do: remember conversations even 10 minutes ago. drive due to getting lost and not knowing where anything or anyplace is. Also due to attention span being very very short. remember one step instructions if we are having a conversation before or during the instruction. All has to be quite and repeated before it is understood by dh. cook, or be responsible for helping stir things. He forgets it has to be done. work due to memory loss handle money matters either on paper or as of today when paying for fast food. Today we noticed he just went blank when looking at the money. taking phone messages either by telling about the calls or by writing them down.
When trying to figure out what my dh can do and what he can't do I am realizing it is not that easy. He is functionable, he can walk even tho he looses his balance, talk even tho he repeats the same questions every few minutes and gets his words mixed up in most conversations, take care of his personal hygiene, and things of this nature. But he does have to be supervised most of the time. He does wander aimlesly and get lost both in the house and outside. He is a full time job most of the time.
His mind is still sharp enough that he tends to be hard on both himself and me when he forgets things or his words come out wrong. That is the hardest for me right now. Seeing him know he is failing so fast. He is still so handsome and loveable and has such a great sense of humor for joking. He still makes me blush when he looks at me with that twinkle in his eye.
I think about all that he can't do and get so sad, but then we also have to look at what we still have and Thank God for the smallest things. Things that before this disease make our blood boil it was so irritating. Now it is a blessing that these things can still be preformed.
Thanks for letting me ramble but this topic is one that really makes me put things in prespective, something that I don't always do.
Several people have mentioned shredding as something that their LO's like to do. We have never had a shredder but this sounds like something Siem would like to do and I suppose the shredded paper could go on our slow compost pile. I've never used one : Any suggestions as to what kind to buy?
Jeanette, I bought the one at Sam's that has its own basket to empty. I've had it for two years or more and use it daily. I love it. I think it was about $35 and shreds and cuts. I can even put old credit cards through it. ***************************************************** The title of this discussion is what can your LO do, and as to that, here goes:
Can sit up in bed sometimes, and sometimes needs my help.
Can walk while I hold his hands and walk backward in front of him for his balance. However, on occasion can walk unassisted, but we never know when it can happen.
If you put the fork or spoon in his hand, and remind him how to put food on it, he will continue to do so until the plate is emptied. If you give him a sandwich, cut it in 1/4 and hand him the first portion and he can continue. For liquids, he prefers to suck through a straw now, and will finish a glass of liquid quickly that way.
He can hold his battery powered toothbrush, his Jack'OLantern flashlight, and turn them on and off constantly all day (I keep a supply of batteries) and he enjoyes holding his National Geographic magazine and actually turn pages. He can't read or know what the pictures are of, but he remembers to turn the pages and will do so until he gets to the end of the magazine, then start over.
He can stand in the shower while I shampoo his hair and wash him; he can hold the towel and "help" me dry him; he can lift his feet (most of the time) when I need to put on or take off Depends or slacks; and button his shirts.
It is so sad to watch this man whose muscles and instructions to his muscles deteriorate to this condition. Last night he couldn't understand the simple direction "stand up" or "have a sip" yet this morning he can again. It comes and goes.
He sits in the recliner all day except for two or three turns around the house (his exercise) and trips to the bathroom. He dozes off and on all day, and sleeps from 10 p.m. until 3 a.m. - then dozes or tries to sit up in bed until I get up at 5:30 a.m. - 5:45 a.m.
It isn't much of a life for him, but it is his comfort zone and he seems content. I take him out on Saturdays for a couple of hours, and he seems to enjoy his ride. Since he can't communicate, it makes things harder. But, if I hug him, he'll hug me back. If I kiss him, he'll kiss me back. I don't ask for more than this any more.
DH's "can't do" list is much longer than his "can do" list:
He can:
sit erect eat pureed food when it's fed to him Say "I love you" back or "Hi how are you" when spoken to in a loud clear voice Make eye contact occasionally grip my hand cry
He can't
feed himself dress himself clean himself speak coherently walk control bowels/bladder say my name when I ask "Who am I"
Ok, I guess the lists look about equal, but most of the things that one would consider "quality of life" things, he can't do.
It just amazes me when I compare with a year ago. He could:
walk talk feed himself acknowledge that he knows us live at home (he's now in NH) and until Aug. of '08, he could go to the bathroom himself.
DH's decline has been so rapid compared with many of the LO's I read about here. I know everyone's different, but it seems like he went from driving and functioning as a seemingly "normal" person to nonfunctional within the past 3 years. He's been in the NH for almost a year now. I hate that they can't really "diagnose" him. It's dementia, but it doesn't really qualify as AD, more Lewy Body dementia. But I know that's a topic for another thread.
We focus on what my DH CAN do, but in preparation for my being gone several days to an out-of-town conference, I completed and ADL (Activities of Daily Living) assessment. Much to my surprise, he is dependent on all but walking and transferring. He is safe to be home by himself yet (about age 10-12 level) and will call if an issue. However since he can no longer do much without cueing, I'm bringing in someone 3 hr a day 5 days a week. By then he is worn out, as chores and just living/eating, etc seem to take so much out of him. The 'activities coordinator' had sick kids, so he went to Day Care the first time this week and loved it.
RE: driving...The Hartford Group has an excellent assessment to tell whether the LO should be driving. Remember that the LO driving, possibly impaired (even with a diagnosis of AD or other dementia) opens up your family for liability in the event of an accident. It helped me with the 'not driving' issue by telling my DH that I KNEW he did not want to hurt anyone else in an accident AND he did not want us to be sued and end up living on the street. Maybe a bit dramatic, but....I've heard horror stories, so maybe not.
I don't want to depress anyone-but---on a good day-which is rare my husband can open his eyes, walk a few steps with maximum assistance and feed himself a pureed diet. He rarely makes eye contact and has no understandable speech. He has been this way for over a year.
Make himself a sandwich, cup of tea and a cup of coffee (instant). Shave and shower. Make his bed, change the sheets and get clean towels out. Empty the trash. Empty the dishwasher but sometimes doesn't remember where things go.
He can't remember what I have said 2 minutes ago. Sometimes when I am telling him something he looks at me like I am speaking Swahili. Repeats telling me things. Can't remember anyones name. And sometimes comes up with places we have never been to as if we have been there.
I guess compared to many here we are doing pretty good!