My wife has recently noticed that there are very different ways that patients and caregivers relate.

There is the Patient to spouse relationship

There is the Patient to parent

There is the Patient to child

The dynamics of each of the caregivers to the patient can be very different.

I guess there is sometimes a Patient to close caring friend

and Patient to paid caregiver

My wife is organizing a wives support group locally within the larger mixed support group. The support group does not meet again until August but the wives group will meet for coffee over the summer.

Maybe we can use this thread to discuss how our responsibilities to these different caregivers can be best.

I have no ideas to start, just wanted to pass on my wife's observation.

Well, I guess I do have an idea. I find I get frustrated as my bread-winning roll has changed. I cannot be the provider I was for the previous two decades plus. I can still get things done around the house, just at a slower pace and sometimes needing assistance or coaxing. I am sharing financial tasks with my wife as I start to hand over all of our finances. I can still get taxes done with computer assistance. I am becoming less and less involved with my mom's affairs. As I am the eldest, she still counts on me as much as possible.

My three grown children are not involved in my care, except my youngest daughter has learned to
relate to me without being argumentative. She has learned to accept my condition and accommodates me well.

My middle child, daughter, still thinks I am beyond her ability to understand. She has dismissed me. (She has PTSD from service in Iraq)She is the only one who lives locally but is stuck in her own life and pity party.

My son, eldest child, has become able to understand me better. He has enough struggles as he raises a family with a stay at home mom and three kids. He has come to understand that we do not always get things our way. Sometimes, we need to learn how to make lemonade from the lemons. That give and take has greatly improved his outlook on his life and others in his life.

So, considering where these relationships were say, four years ago, things are much better now. The most important issue has been having a frank discussion about my condition and prognosis. When they understand that melt-downs are not caused by them nor aimed at them, they can let them pass. (Not the middle daughter) They understand that my availability and responses to them can vary depending on my day.

Maybe I have said enough or maybe too much.

But this is a start of a new conversation

Speaking of religion, what's-his-name Buber talked about spirituality and relationships, including the "I - Thou." I recall he was pretty eloquent on the subject. But then, that was in college, and that buddy was a long time ago. I just thought you might have heard of him, Mark.

Um, I don't know about your saying "maybe too much," but I'm not clear on what conversation it is that you want to start. Could you say it again, keeping it short and simple for us dementia folk?

Basically, I am just putting out the idea that we relate to different people in our caregiver and support structure with different dynamics.

Maybe this discussion is more appropriate for a caregiver forum. I though we could look at it from the caregivee (receiver of care)perspective.

What are our responsibilities to those who care for us?
What can we do to improve that relationship?
How does our emotional instability affect those caregivers?
Those caregivers may not be constant caregivers, but instead just loved-one who care.
Is the relationship one-way or is there appropriate responses to their efforts?

I struggle with needing my wife around vs her need to get out of the house.

Is anybody understanding what I mean?

Mark, I've found there are times when I think I'm making sense, but nobody understands me. Maybe you're in one of those valleys.

But, I think you're looking for what people consider ethical behavior on the part of the dementia patient?

Here's the problem with that: About half of Alzheimer's patients have no awareness of their problems. I'm not sure how those folks can wrap their brains around what others would consider reasonable behavior, if they can't see the problem. And they really can't see, no amount of reasoning or arguing gets through.

The rest of us have times when regular communication and behavior isn't a possibility.

Now, in the more workable area of your need to have your wife around, we can get somewhere with that. I suggest scheduling. As in, when your wife is going to be gone, that you know what she'll be up to, and when she'll return home to you. A phone call from her when she has a break, to check in and whatnot, can also be helpful. If she's running late, more phone calls to you, so you understand what's going on.

Is that more what you're looking for?

I think I understand what Mark means. We always read how the caregiver has to take care of the patient, and how they are adjusting to their new responsibilities and burdens. But what about on the other side of the fence, the caregivee/patient? We never talk about how it feels to be taken care of. As Alan said, by the time we get so far gone that we need so much caregiving, we're past the point of verbalizing how we feel about being so dependent.

Many caregivers describe their LOs as being cantankerous. Perhaps that's their way of expressing their feelings in a non-verbal way. But what exactly are they expressing?

Mark, you said you need your wife near you. The caregivers say the LOs won't let them out of their sight. Are you afraid if you don't see her you will forget her? What are you thinking about?

Iris L.

Alan,

I am more interested in what others think we should think introspectively about these behaviors or perceived needs.

What kind of accommodations or acceptance of our condition can/should we expect from others.

maybe this is to individual for this forum. Just a thought for discussion.

Hey Everybody

I want to know why a spouse is there for you when others are around but, when those others are gone, the spouse is gone, doesn't "react" to the "monster's" needs? Anybody else go through this?

M

cont'd

God knows, I'm far from perfect, especially when the "monster" lurks from within, but, damn, can't others see the differences? Is it possible that this is the cause for our depressions? We realize our deficiencies because the caregivers are telling others we're worse than we are?

M

For me, my need for my wife as more to do with helping me with various tasks. As I have good times, when I want to get somethings done, I often need her help to do the task.

For instance, I have been getting things in the mail about my SSDI. When I read the letters, they will ask for a response. I might need her input in a decision. By the time she gets back home, I often forget all about the need for her input. Or if I do remember, I need to start all over again at sorting out the request for a response.

On this forum, I can start a reply and need to go take a nap. When I come back to the reply, I can read my previous thoughts and usually pick up where I left off. I haven't been able to come up with a work-around for remembering what the task was that needed my wifes input.

In most other areas, I will forget and not remember until it is too late. I try to use a white board on the refrigerator as a prompt but often, just remembering to use the white board cause me to get distracted from the task at hand.

My father was so good at written notes regarding issues that needed follow up. I usually cannot remember to jot down the thought so I can be reminded later.

She bought me a small dictation recorder but I do not remember to use it. Or if I do use it, I forget to play it back.

Maybe I should try to not start these tasks while she is out. Maybe I should not open the mail until she gets back.

I just get frustrated when I am feeling up to trying to do something productive but just need a little bit of help or feedback from her.

My inability to drive to complete small errands leaves them undone and often forgotten.

We spent almost all day yesterday running around doing errands for me. Still, there are things I forgot.

I struggle with feeling so dependent on her. Where is the line between reasonable expectations of her and being too dependent?

I would think that this is something that others have to deal with too.

cont'd

I also think what Mark is saying, is possibly his wife stays away longer through the day due to (?) work, shopping, running errands, etc., so when she's in the house, he follows her everywhere.

Personally, I do that with anybody who comes into the house. My husband schedules himself to work 11am-1030pm 3-5 x's per week. So when he's there, I crave conversing with somebody, therefore, I tend to overshadow him or whoever else is there.

Mark is this what you mean?
M

I don't usually shadow her. But when she gets back, I get frustrated trying to remember the things I needed to ask her.

I have a chair across from her desk where I can sit while she works. She knows that when i sit in that chair, I want to talk to or with her. My struggle is trying to remember what it is I wanted to say until she gets home.

Maybe I am just ranting about something that cannot change. Who knows if I would remember long enough to get to her office to ask her?

Just frustrating.

Hi Mark-
I am a caregiver for my father with ALZ. In one of your statements you asked what is the patients responsibility to the caregiver or anyone else for that matter. There is none, We caregivers do what we need to do to care for our loved one. With my dad, although it took some time for me to get this way, I have been able to always understand when he does things it is because of the disease and there is nothing we can do about it. I read about other caregivers who take rage issues and behavior personally and you just can't do that. This disease changes our loved ones. Acceptance on our part is what gets us thru. I also noticed that the dynamics are quite different in caregiving between spouses. I myself am still tying to understand that. I watch my mom with my dad and see frustration and anger in her. I have learned that the situations in caregiving are very different between and child and parent vs a spouse. That took me a long time to understand and can say I am not fully there yet because i am not caring for a spouse.

Mark,

Why don't you write down the things you want to talk about when your wife returns home. Just a thought. My husband is with me all day and only leaves me to go to the Dr. He calls me when he out.

Sharon

Kathy has seen what I am talking about.

Before behavior become hard to control, there is a time where we do have control over our behavior, wants, needs, demands, etc.

My wife knows when I am "out of it." She also knows when I am just struggling and need her to redirect me.

I used to get annoyed by her attempts to redirect me. Now, I have learned to trust her and follow her lead.

Regarding making notes. That is the frustrating part. If I have an idea to express, I often forget it trying to get started writing it down. As I mentioned, she bought me a digital dictation machine about the size of a cell phone. I carried it for a while but would forget to use it.

My memory deterioration happened over a very short period of time. Too quickly for me to learn work-arounds like my father did.

I still habitually act as if I have my great memory skills of my past. I have not been able to overcome the habit of thinking I will be able to remember simple thoughts.

I am finally trying to get disciplined at names. Someone will introduce themselves to me. As we go on talking, I realize I don't know who I am talking to. Now, I am not embarrassed to ask their name, maybe three times in a short period.

The mental gymnastic I go through trying to remember names of people I have met often in the past 8 years are humbling. Remembering has become such a difficult discipline.

I even told my wife recently that I call her Sweetie because it is the first name for her that comes to mind. Sweetie comes from both intellect and emotion. It takes more effort for Yvonne to come to mind. It comes just from intellect. At least that I how it seems.

Is this making sense?

Kathy, thanks for your input. You have observed the differences well.

As I watched my father decline, it was obvious that he had very different levels of surrender or compliance with different caregivers.

My mother could get very quick compliance. My sister, brother or niece had to convince him that he should comply after identifying themselves. I had not learned to use those "identify yourself then ask for compliance" techniques. I did not (could not)remember to use them. Fortunately, my mother was always there when I needed to help him so her support by telling my dad that "Mark needs to lift you into your chair (bed, wheel chair)" filled the gap.

I first noticed this trust issue at a customers house years ago. Her AD husband responded to her similar to how a golden retriever responds to his master. The golden does not respond to others as well as he responds to his master. It is like the recognizable voice has a direct connection to response. Maybe that is the case. The unrecognizable voice is heard with the confusion of "who is that speaking?"

I feel awful comparing AD sufferers to a dog, but it is the best illustration of the situation.

Hope I am making some sense here.

Mark,
Please understand me when I say Im just a daughter trying to take care of her dad. My dad has never been able to express to me how he is feeling with this disease and he is too far into it now to do that. My whole point is I have learned that the dynamics are far different between spouse dealing with it and a child dealing with it. The dynamics are something I am still trying to understand as trust me I have read everything and feel I am doing a pretty good job of dealing with my dad having this disease. But as a spouse, well I have no idea how it is to deal with that. All I know is that I expect nothing out of my dad, he has this disease. I am the one who just needs to do what i have to do to make him comfortable and happy and that is why I responded to you. Maybe it's just my opinion but as a caregiver I expect nothing from my loved one. You should not have to feel like you have to do something for your loved one or a caregiver to make it better, sorry but you can't make it better. The only thing in life that would make things better is if this disease did not exist, but it does. So just know as a patient, we will do whatever we can to make it better for you. It may be right it may be wrong, but we will take care of our loved ones no matter what it takes.

Mark,
My husband has AD. He is 58 years old. Yes, it is different when dealing with a spouse. The relationship changes some. I have to do some things he used to do. Please ask your wife to check out a web site for spouses,
thealzheimerspouse.com.

It was started by someone with a spouse who has Alzheimer's disease. She realized the relationship of spouses had different components than dealing with a parent or grandparent. It is for spouse dealing with any kind of dementia or cognitive issues.

I am so thankful to be able to read your posts. My husband is not aware of his cognitive problems.

Reading what you, Bill, Alan, Mary and others write helps me understand his frustrations.

My husband and I have history. We have kids (adult now). Whether he realizes it or not, I am there for him. And always will be.

PatB

Mark, I'm having similar memory problems. When in conversation, I seem to always lose track of my subject, if I add in a thought, then try to return to what I was talking about. It doesn't matter if the tangent was only two seconds, I've lost where I was & I can't get it back 90% of the time.

And, that thing where I go from one room to another to tell my wife something, or call her for something? I'd better write it down first, or maybe just say a keyword over and over, not even saying "hi," just the keyword.

I can't get anywhere in my own head, with this spouse stuff. My wife was found to have an aggressive breast cancer late last summer, and the resulting surgery and treatment has been overwhelming. Treatment's still going on, just a little less. She's still flaking off burned, blackened skin, from her radiation burns, radiation stopping maybe 2 weeks ago. I can't justify unloading too much on her, when I need to be strong for her, more so than her for me right now.

Mark, I had a golden retriever, big strong smart dog who lived to be about 12. In his prime, he was much more sensitive to others, and socially appropriate, than I am sometimes.

My father was in denial of his memory problems yet he took great pains to learn work-arounds to his memory problems. I think his denial was just external, not internal. Otherwise, why would he have worked to overcome them. He could tell you so much about brain health until he really started to decline.

I think he thought he could overcome whatever was happening to him. Finally, he was diagnosed and reluctantly let other start to help him. It wasn't until he had a major melt down at the gym that he finally truly realized what was happening. He claimed that someone has stolen his wallet. He went ballistic. When he got home, he found that he had left his wallet at home. He was so embarrassed, he never went back to that gym.

After nine months at a different gym, he finally could not work out anymore. I think that episode of melt down at the previous gym really broke his spirit. He finally realized that he was no longer in control. He succumbed to his disease about two and a half months after his last work out. His deterioration went quickly the last year. Maybe after the melt down, he gave in to the disease. He was a proud man who had ridden in a wagon behind a team with his father and later worked as an aerospace engineer on the Hubble Space Telescope and top secret surveillance satellites. Not a rocket scientist, just a rocket engineer.

Like me, he tried to keep his mind active. His body would have easily lasted into his nineties if his brain hadn't given out first.

I could see in his eyes the confusion from losing cognitive skills. I recognized it because I have had the same confusions. Those of us who are younger appear to maintain judgment skills that many older dementia afflicted lose.

I wonder which is worse, to lose the sense of losing touch with the reality of cognitive decline at the same time as losing the cognitive skills. Or maintaining enough awareness to be able to recognize the memory and cognitive decline. It is like I am sometimes a different person noticing the decline Mark is going through. I can remember the state of confusion at a later time when I have recovered to a better state of awareness. I can see the same fogginess in the eyes of others as they struggle.

Often, my better times are later in the day. I can look back at the fogginess I had in the morning.

Those who are not aware may be better off.

As the modified saying goes,
A mind is a terrible thing to lose.

Tomorrow I will be going to a birthday party for my wife's step father's 85th birthday. His mind is as tarp as a shack. At least that is what he would say.

I had an experience today with a friend that was embarrassing to me. I was supposed to drive her home from outpatient surgery in her car. I could not get her car started because I forgot how to start and drive a manual shift car. I've driven ONLY a manual shift car for over 35 years, I just got an automatic shift car 2 years ago. How could I have forgotten something so ingrained in me? I felt like a dunce.

Fortunately, she is a good friend and the nature of her surgery allowed her to drive herself home. I don't feel good when I can't be a support to my friends. I dread the day when my memory losses will become more obvious to people. I dread the day when people will say, "What's wrong with her?".

I don't have a spouse or adult child or close relative who might feel inclined to help me out. I fear being further isolated from people because they won't want to be around someone who can't function.

Iris L.

Iris, you're piling up lots of friends right here, remember? If you were to decide you wanted friends in your community, I'm sure you could think of ways to do that, too. You're an intelligent, caring person, who still has much to offer.

With that car, did your embarrassment heat up as soon as you started to ponder how to drive it? Embarrassment, anxiety, fear, these things all decimate our working intellect by at least 50%, so I'm told by neuropsychologists. And us dementia types can't quite bounce back as fast as we used to.

As people get comfortable with knowing you have AD, they'll be more comfortable with your issues. But really, if when you're with people and you just aren't able to keep up with conversation, remember this: Look in the eyes of the person talking, but don't stare; if someone looks at you as though expecting a response, just say weightily, "Yeah" or "Hmmm"; if pressed to say more, say, "I'm not sure; can you tell me more about what you think?"

I'm certain you can think of lots of ways to stay in a conversation, even when your stamina is fading.

I posted on this thread to indicate that I don't have access to the "cueing", reminding, or prodding, that a spouse, adult child, or other close relative would give to a memory-afflicted person. The thread is about patient-caregiver relationships. I don't have a caregiver to give me that little nudge.

If yesterday, I had been reminded that that the car has a stick shift, it would have refreshed my memory and I could have driven the car. This is what I'm concerned about, not having the level of relationship that would allow a person to give me the little bit of help that I need to function, that would come automatically from a spouse, adult child or close relative.

I really appreciate the caring, support, and encouragement from my cyberfriends. But cyberfriends can't nudge my memory. And this is what I wonder about. I won't say fear because I'm not a fearful person.

I think doctors and other professionals just assume that you live with another person who can help you on a day-to-day basis. Casual friends won't respond the way a family member would.

My personal response to this is to plan to rely on professional caretakers. This is my new life--dealing with strangers.

This is an unpleasant topic for people with families but it is what it is.

Iris L.

Iris, of course you're right, it's a different world when you live alone, with a progressive illness. I apologize for not being sensitive to the huge difference that makes for you.

For me, the different world is when someone gets a progressive dementia, but money is not a problem. I can't, I really can't, imagine a life where being able to pay for care, was not an issue.

Iris, if I may ask: Do you experience a lot of anxiety about living alone? Do your dementia symptoms cause problems with your normal activities?

Alan, I want to respond to your questions but I can't right now. I'll post later.

Iris L.

Iris, rest well tonight. And don't ever think that answering one of my questions is mandatory! I'm just wondering how your life is different from what I might have thought.

Hi to All,

If I may, I'd like to add to this living alone.

It is difficult to live alone with this illness but it was harder when my ex kept harping on me about "selective memory" or forgetting conversations or his not willing to accept the fact that I had this disease and unwilling to learn about it.

He'd tell me to just "fight it," "Don't give up." I wasn't giving up. I was trying to re-group and get my feet re-planted on the ground! I was learning about my disease and trying to cope!

I am sorry you are battling this alone, Iris. I know what it is like. I, too, wonder if there's no one to remind me will I get worse? More mixed up and confused?

I don't know. I've been up since 4am. Perhaps, I'm just tired.