I'm new - need acvice

Schatz

I feel a bit self-conscious writing for advice when so many of you have issues that are more serious than mine, but I'm seeking help. My husband is still pretty functional, but is easily confused, has little sense of time, has very little short-term memory, and loses the thread of what he's doing easily. He comes to me frequently seeking help or advice about things he thinks he wants to accomplish or about mild to moderate health issues which just need home treatment or may sometimes need a doctor's appointment (aches and pains, stomach discomfort, etc.). I try to help, but he rarely follows my suggestions. After multiple repetitions of the same request for help or advice and multiple repetitions of my a suggestions, he remains passive. If I ask him what he thinks or wants to do, he says he doesn't know. The exchanges get more frustrating (for both of us I'm sure), but he does and says virtually nothing, and then continues to come back to me with the same request. I know everyone says "don't argue -- it doesn't work." I try not to, but because he's clearly frustrated or in pain, I become more insistent that he try my suggestion, and offer ideas about how to get started. At this point it's a lose-lose situation. If I don't continue to try, or say I''m sorry but I can't help you, then he gets very angry, feeling that I''m refusing to help. That tips me over the edge. But if I get so frustrated that I try to stop the conversation or stop helping, then he does whatever was presumably in his mind from the beginning. So that's even more frustrating. Is he just looking for affirmation? Not all the time....he really seems to be confused or in pain and not know what to do, but my assistance doesn't work for whatever reason. I''ve tried diversion, but that only works for a short time, and then he's back with the same request. I understand that these perseverative ideas that he's come up with from his own thinking are more real and immediate to him than my suggestions that are easily forgotten. Sometimes the idea in his own mind of what to do is going to be harmful to him or embarrass him with other people. So as I said, it's lose-lose. Should I not try to protect him and let be in pain or be embarrassed because either he''ll remain passive, or he'll do what apparently was in his mind from the beginning? I need a way to handle these situations that are getting more and more frequent. Any advice is really welcome. Thanks!

Rick4407

Hello Schatz.  If it is dementia you will eventually end up as the adult and doing all the decision making.  In this early scenario I would say "OK.  I'll make you a Dr's Appt.  I'll go with you since it may be cooking or something I can help with".   Then you can make the appt and accompany him.  If it is dementia, accompanying your DH will become essential.  He may not remember instructions or any diagnosis.  He may also reject a diagnosis if he doesn't accept it.  In either event you need to know what  the outcome of the appt is.  You both have a vital interest in each others health, encourage him to come to you appt's as well.  That may make that step easier.

Good luck, Rick

Quilting brings calm

At some point, you will need to actually do whatever you are giving him instructions or suggestions for. He’s repeatedly asking you because he can no longer do things that require doing multiple steps.  Even though he may tell you he can. 

So you need to make the doctor appointment and go with him and follow through on medication etc.  He should not be driving at this point because his thought process  isn’t there.  

sunshine5

It seems like DH has a memory problem. It may be best that u make the decision for him. He clearly is not able. 

I just realized that DH with mild dementia doesn’t know what he wants to eat. I stopped serving salad as he told me- he doesn’t want salad. Today, I served him salad without asking him, to my surprise he ate all the salad,  no questions asked! 

What a pleasant surprise! Win win situation!

Stella Luna

Hi Schatz,

Please make the Dr. appointment for you DH and go with him. Ask his doctor about your DH memory concerns and ask for a referral to a neurologist for a thorough evaluation. Good luck on your journey.

RobertsBrown

At some point I realized that what was said, by either of us, was not as important as the way it was said.  it started so slow that I didn't catch on at first, but most every conversation was seeking help or reassurance.  "I want to go home" just meant she felt lost.  often, just telling her she is OK is all she really needs.

I had to reduce choices, from "what do you want to do" to "do you want to do X or Y?" and eventually reduced to one action.  "let's do X".

Reading posts on this board, I guess I will have to reduce things even more before long.

This is a process of coping without any real rules or guidelines.

Rob-

harshedbuzz

Schatz-

So many people think in terms of dementia being all about memory loss. It isn't. It also impacts cognition and emotional health.

What you seem to be describing is the loss of executive function which is impacting his ability to formulate a plan to take steps to accomplish what ever task he has in mind. Along with short term memory loss, this means someone else needs to take responsibility for the task and see it through to completion. For something like a doctor's appointment, that means you schedule and attend to be certain he's reporting what he's been complaining about and to take ownership of any next steps to be taken. 

Dad used to complain about one ailment and then go on a tangent about some unrelated nonsense or deny his complaint once in the office. He also conflated information about things like exercise (golfing 4 times a week, swimming, going to the gym) and alcohol use (he was supposed abstain entirely) so one of us needed to be their to nonverbally signal whether dad's reporting was accurate. And of course he couldn't remember things like follow ups, ordered tests or a prescription faxed to the pharmacy for pickup.

Another issue we've had is that sometimes dad would complain about ill health or pain as a bid for attention when he reached the point where he could no longer entertain himself. 

For things like projects, I would rinse and repeat the suggestion and let it drop unless it is something you want done and are willing to work along side him discretely directing with steps.

The other thing you are seeing is probably inertia which is sort of related to apathy. This is a common personality change. For dad, we saw it in the latter part of the mild stage. Things that used to interest him no longer did. Going to the pool, out to dinner or even reading just didn't entertain him any longer. In terms of inertia specifically, he had trouble initiating even on tasks he could do. 

HB

AnnieTB

Ohmygosh…I can relate to this so much. I too have not posted in the past because my DH is not nearly as far along as so many, he is only 68 (I’m 63) but he has been having forgetfulness for years. I coordinate all doc visits, appointments, etc. and accompany him. He still drives some but that needs to change, as now I am noticing the executive functioning issues (unable to accomplish simple tasks). It is so difficult to have him so dependent, but I am realizing he depends on me for everything, even if he is not aware of it. I know this is not going to get better, so I’m leaning on good friends and supports. It is so hard, I am sorry you are in the same boat. 

Arrowhead

First off, never feel self-conscious about asking for advice. Your need is just as great as everybody else’s. For people with this condition your best response is to show, not to tell. For example, if he’s in pain do not tell him to take an aspirin, but get the aspirin for him. My wife comes to me several times a day and tells me that she has a problem. Most of the time she’s not looking for a solution but rather for assurance. I tell her that I will do what I can to help her. Most of the time that is enough.

Cynbar

I think you are talking to him too much, and this is a mistake that most of us have made. As mentioned above, dementia is about so much more than memory loss. Executive function, the ability to follow several steps and execute a plan, is often the first to go. It does sound like this is what is happening with your husband ---- he hears what you are saying but can't put it into action. That is why he keeps coming back with the same complaint --- it's as if you are speaking a different language and he just can't understand what you are telling him. Try simplifying things, taking action yourself and presenting it to him. For instance, instead of telling him to go take Tylenol for a headache, get out the pills yourself and hand them to him. Make the doctor's appointment, go with him, and send a note or email in advance so the doctor will be up to speed (in case your husband denies everything once there.) This is a big hump to get over, accepting how much function has been lost and that you must take over. Believe me, most of us have been there.

Rescue mom

I second everything Cynbar said. My DH lost “executive function”—the ability to carry out a few steps towards an end—very early. I had to do it myself, or lead him through each step individually. Nor could he make choices.

Suggestions that did Not work: call the doctor, set the table, get an aspirin, fix some soup. etc. We do those things automatically. They can’t. 

What was hard for me, was to remember such things involve a lot of steps. It’s so automatic for us, but we have to remember there really are a lot of steps, and they just can’t do that. Also hard: realizing that he would, almost always, accept what I chose, far easier than having to choose himself. I had to stop asking, and just do.

Kenzie56

All of the comments/suggestions are right on the target. I keep saying to myself simplify, simplify, simplify and that helps me. My DH follows everything I do (waits until I wake up and then he gets up, gets dressed when I get dressed, sits down to eat when I sit down, even if the sandwich is on the table long before that...he even walks behind me to see where I go and follows what I do when we are taking a short walk.) When he started losing his communication skills, I was decoding and filling in blanks, but he could still pretty much understand me if I communicated in simple sentences.  Then the comprehension decreased...so I went from 5 step instructions, to 3 step, to either this or that, to just one choice - that I decide. That works for us now and he seems OK with all my choices and it is one less obstacle we have to navigate. 

I've learned from others on this message board that we all modify our actions daily at all stages of this awful disease. What works one day may not work the next day, so we try something else. We are all desperately lonely, frustrated, sad, etc., due to lack of communication with our LO. One size doesn't fit all, but the support and suggestions from others in the same boat (at any stage of the journey) gets us through another day or two. Hang in there and I am sorry you are in this situation. I do hope you see a neurologist. Sometimes medication can help for a period of time - at least that will give you time to prepare.

June45

Yes, executive function is one of the first things to go.  Eleven years ago my husband couldn't pack for a business trip; something he had been doing for years.  I had to pack for him and I was irritated because I thought he was just being lazy.  He lost his job not long after that.

Paris20

Schatz, if your husband has a form of dementia, it’s fruitless to analyze his behavior as if he were aware of his condition, motivated by rational thought, or easily changed by your words. The modes of communication must change. It’s not just about speaking simply.  It might include saying whatever is usable at the moment, keeping in mind that whatever you say will likely be forgotten whether you tell the truth or not. Keeping DH safe is paramount.

What I’ve learned over the past several years of caring for my husband is that he simply cannot remember anything from one moment to the next. Actually, it has become one second to the next. For example, he went to the next room to get a bandaid. By the time he arrived, seconds later, he was empty handed. Two-stage actions, such as getting shoes AND socks are impossible. He often doesn’t know where he is, what year it is, who the President is, or even the names of our grandchildren. 

I realize Mr Schatz is not at my husband’s stage but the behaviors described are all too familiar. His abilities will decline, especially cognitively but also physically. Falls will become more likely. If you have a definitive diagnosis, take a good look at the comments around this website and learn as much as you can about what may lie ahead. Good luck!

Iris L.

AnnieTB wrote:

  He still drives some but that needs to change, as now I am noticing the executive functioning issues (unable to accomplish simple tasks). It is so difficult to have him so dependent, but I am realizing he depends on me for everything, even if he is not aware of it. 

Lack of awareness is anosognosia and it is a characteristic of dementia.  He should not be driving--there are too many steps and you have to be completely aware of what is going on around you.

Iris L.

Gig Harbor

It will help if you slow down your speech and use as few words as possible. Offer to make appointments for him. I tell my husband that I am his memory because his left town. I also tell him that I will help him with everything but that he has to believe me. So far it is working. I can’t ask him to do several things because he can’t remember more than one step. Today I asked him if he would wash my car and he said yes. I set everything up and realized he had no clue what to do. Last summer he did. The changes sneak up on you. Some people keep a journal but I honestly don’t want to read back and then realize how much he has declined. It is a sad disease because is is all downhill.