posted
Hi folks, so because this involves a family member who would likely not want his personal details revealed, I will keep this up long enough to get satisfactory responses, then I will take it down.
My Dad, 62, has been diagnosed with Vascular Dementia, and is being forced to retire. as some of you know, I live out of the country and have not seen him in nearly two years. I will be visiting in July. He's had type 1 diabetes for 42 years, high blood pressure, and has suffered multiple small strokes, and periodic episodes of hypoglycemic shock.
My mother reports that in the last year he has slept at home frequently, all over the house, been even more forgetful than usual, seems depressed and apathetic, and pursues none of his hobbies, interests or friendships as he did before. He is still able to talk to me on the phone with apparent ease, but has trouble communicating in person, which I have heard is not uncommon. He was a high level executive and legal counsel at a publishing company, but over the last several years he has lost his driver's license, relinquished many of his former responsibilities, and finally was told by his endocrinologist and primary care physicians that he must retire, as he can no longer be covered by legal malpractice insurance and could be disbarred.
My question is in the area of what is reasonable to expect out of this situation. His doctor has told my mother that retirement could give him a chance at improving his quality of life, but once such a diagnosis is reached, what should family expect in the coming months and years? Is deterioration swift, or slow, are there possibilities for improvement? Most of the discussions I've seen online discuss elderly patients in their 80s who are in nursing care and seem to be much worse off. My dad can still take care of himself for the most part, and still leads a relatively normal life. I wonder what his retirement will be like, and if there is anything for me to do to make it better. My mom's worst problem with it at the moment is his apathy- which has been mounting for the last several years, at least the last 5, and longer when I think about it. He is disinterested in films, books, art, hobbies, friends, food, travel, etc. There's little that I can think of that will grab his interest, and I know that isn't a good state to be in. Any thoughts?
posted
I wish I could offer advice or help, but I'm afraid I don't know anything helpful. I will offer my best wishes...sounds like a tough situation. My thoughts and prayers will be with your family.
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posted
You need to consult a professional. Having both him and your mother go to a therapist who specializes in elderly/dementia care and management may allow all parties involved to figure out something that can inspire him to offset the apathy. If he's simply disinterested in it, then there's very little you'll be able to do except antagonize him over his apathy and just make the situation worse. But don't go forward on this without consulting someone who specializes and is a professional when it comes to these sorts of things. And, in truth, their job will be mostly to train others how to handle him and accept what's happening without undue stress, rather than force any sort of improvement in himself.
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posted
My parents are already involved with specialized therapy as advised by his doctor- I ought to have mentioned it. I've only been with him to his doctor a couple of times, as he was hostile to the idea of me going when I was younger. There was not a lot for me to do except hear what his doctor had been telling him for years while he looked at his medication diary, which had some shockingly low blood sugar entries (lowest was 45, which is very dangerous). Technological advances have subsequently allowed him to carry a monitor which has helped to stabilize his level, but this stuff about the dimentia is fairly new to me. My parents are poor communicators and spend a lot of their time either in denial or being secretive, so he has little idea that she updates me on his condition, and I'm sure she doesn't tell me everything either.
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posted
To go forward with any advice, I'd have to know what the 'specialized therapy' is. it doesn't sound like something specifically related to dementia and assisted living if the therapy is already ongoing and he has just received the dementia diagnosis.
make no bones about it: watching someone you love fall into dementia is utterly hideous. It is terrifically difficult to manage, and i'm pretty sure that the people around him are going to need extra help on this one since the process between him, his health, and his family seems so maladaptive already. You want the therapist for the sake of you and your mother's sanity more than anything. You want someone who works specifically with this sort of issue. They will let you know whether or not it is worthwhile to 'force' understanding or activity in other areas.
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posted
It is therapy related to the dimentia, according to my mother. He's also seeing a psychiatrist and is on some form of anti-depressant, I don't know which. Part of the issue here is that I don't live at home, and I get pretty poor information because my parents are so bad at communication, and because I'm not the best at it myself. My sisters are all near home at the moment (3 of them) but it sounds like they are also pretty much out of the loop when it comes to this issue.
What worries me too is my dad's denial or seeming denial about things. He lies when I call him and he's sleeping, which is more or less normal, I suppose, but he also announced at work that he was taking an extended sabatical, rather than retiring. He also tried repeatedly to get his driver's license back, and was actually successful, though he hasn't driven much thankfully. I was surprised and a bit dismayed to hear he was driving again, because he drove off the road unconscious about 3 years ago when he had it pulled. He could have died easily.
This is more or less why I'm asking the question here. I'm not expecting much traction if I just show up after two years and expect to be in the loop on things at home. I never was to begin with, and I don't see that changing. I'm just wondering what I can do from my current position.
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quote:This is more or less why I'm asking the question here. I'm not expecting much traction if I just show up after two years and expect to be in the loop on things at home.
You should honestly ask to be. you should show up and say "I heard about your dementia diagnosis and I want to be in the loop on it. I want to know how we're going to manage this as a family."
If he flips out about it or otherwise remains recalcitrant towards communicating with you about his end-of-life needs — the whole "this is none of your beeswax" attitude — then you could ask your mom if you could communicate directly with his therapist, ask what drugs he's on, etc. be very forward. Insist that you feel it is important that you be in the loop. If you encounter more stonewalling, then probably the best you can do is wish him luck in the endeavor, and bow out during this timeframe of onset, only opting to re-involve yourself when his dementia begins to necessitate assisted care living.
either way, you yourself may individually benefit greatly from reading up on how to deal with these situations.
Here's an article in the atlantic about the decline of a parent, a situation with which many have no effective strategy.
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That article you linked to is really good Samp. I spent a couple of years as a care giver for my MIL and SIL and could really relate to a great deal of what the writer had to say.
Orincoro, I'm so sorry. Its so difficult to face this kind of life/family crises and even more so when you are so far from home.
Samprimary is right in suggesting therapy. Its good your father is getting therapy but I can't emphasize enough that he is not the only one who needs help. Your mother in particular is bearing an enormous burden, she needs help and support. The rest of your family probably also needs help. Your families poor communication is going to become a barrier to you helping each other. You at least recognize the problem so you need to take the initiative to change it for the sake of everyone involved.
Since you are going home in July, you might suggest that while you are there the entire family could meet with a counsellor to discuss the situation.
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posted
Ori, I am sorry that your dad, and your family, has to deal with this. I went though it with my grandma and it was tough. I also work as an LPN with people who have similar disease processes, so I know a little bit about it.
It is fairly common to see the same type of issues that you see with Alzheimer's patients. They think that there is a link between the two, actually, and possible links are currently under investigation.
I would talk to his MD and get a detailed report about his specific condition. Where are some generalizations you can make, the disease process is highly individual, so getting a status report is critical. I can't really saw any more as he is not my patient.
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I sent my dad an email suggesting that around the time I'm visiting (a month in july and august), we go together with the whole family to his psychiatrist or whichever specialist is appropriate to talk about the situation, so that we could all be in the loop and know what we could expect. He refused, saying he's been to the doctor enough in the past six months, and instead sent me his psychiatrist's report, which was used in his application for disability pay. The report details the symptoms of the condition, but answers nothing of what I told him I would like to know and discuss.
The report also indicates that he had a heart attack six months ago, which no one has mentioned to me. At this point I'm not sure if I can push any further with him, so I'll speak to my mom about it. If that goes nowhere, I'm out of ideas other than just being available to him. This is the first time he as even admitted to me that he has had any serious health problems- before it's all been "my doctor thinks," and "your mom suggests," although come to think, this admission is not much more than that.
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posted
Orincoro, Your father doesn't necessarily need to come to the meeting with the psychiatrist. Get as much of the rest of the family to come as possible. Your mother in particular will need help and support and needs to get hooked in to the networks that can help. It might even be more productive without your father there. Since he is denial, he might want to argue about his prognosis which is the opposite of what the rest of the family needs.
You have a difficult road ahead and you need to know what to expect so you can plan and get the support that's necessary. You and your family members need to know what you can do to best help your father and each other. That discussion might go better without him there.
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quote:He refused, saying he's been to the doctor enough in the past six months, and instead sent me his psychiatrist's report, which was used in his application for disability pay. The report details the symptoms of the condition, but answers nothing of what I told him I would like to know and discuss.
The report also indicates that he had a heart attack six months ago, which no one has mentioned to me. At this point I'm not sure if I can push any further with him, so I'll speak to my mom about it. If that goes nowhere, I'm out of ideas other than just being available to him. This is the first time he as even admitted to me that he has had any serious health problems- before it's all been "my doctor thinks," and "your mom suggests," although come to think, this admission is not much more than that.
1. Don't be so sure you can not 'push any further' — Send him another email saying that you care about him and that it's really no longer appropriate that you be kept in the dark about his health concerns. Tell him you didn't even know about his heart attack and that's really not appropriate (don't word it like that, but, essentially, get across that point. This is something you need to know). Tell him he needs to open up to you.
2. If (1) goes nowhere — good chance — talk to your mother. Meet with his psychiatrist without him. Learn how to deal with his denial and stonewalling via his mental health professionals. Schedule appointments with THEM.
3. If both (1) and (2) fail because neither your mom or your dad are very functional in this regard, contact the psychiatrist yourself from the materials you've been given. Explain your position in great detail. Ask what your recourse is. Take advice.
4. Else if: give up. Sit back. Cut off from getting involved for the sake of your own sanity.
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posted
Don't be surprised if the MD won't discuss it with you. Patient confidentiality is a very serious issue, and no one I know in the medical field takes it lightly. Even if your father's condition deteriorates, he is still legally entitled to full confidentiality from his health care professionals until the point he declares a health care proxy, or the court appoints one for him. From the little bit you have told us, it doesn't sound like he is at that point yet.
However, you COULD discuss various conditions with him, and how YOU could possibly deal with situations without delving into your father's specific treatments or condition. Ask a lot of hypothetical questions, and "what if" questions.
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posted
When I my MIL and SIL were seriously ill, their primary physicians kept a list persons who were "approved" to see confidential information. Find out if your father's doctors have such a list and ask your father to add you to it. Since he sent you the psychiatrist's report, it probably wouldn't be that hard to persuade him to do it.
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posted
I've been home just a couple of days and am still adjusting to the jet lag. I'll be in the states a month, so we'll see how things go, but here are my first impressions of the situation:
My father is, as described, essentially a statue. He does not engage in conversation. If asked a question, he stares blankly at the person speaking to him as if he is being insulted, and has to be prompted several times to get a response. Responses are perfunctory, and sometimes they do not follow the question being asked. For instance, if asked how the weather has been, he will not respond, and if pushed, he will answer that he doesn't have any problem with the weather. In the past two days since I've been home, he has not asked a single question or shown a shred of interest in me past hugging me at the arrival gate at the airport. I'm not hurt by this, since the only contact I have ever had with him in the past seven years has been initiated by me, and I know it's an aspect of his condition, but the depth of the apathy is surprising.
My mother is depressed. There are 7 people living in the house: her, my three sisters, my little sister's fiance, and my older sister's boyfriend. It's a big house and can handle all those people, but it's an obvious strain on my mother. It's apparent that her former custom of insisting on family dinners has been abandoned totally. The place is packed with junk and once clean spaces are overrun with detritus. My mother tells me that she has been smoking again (she hadn't smoked in 30 years) and that she is seeing a psychiatrist "from time to time" and is medicated. She still works full time and loves her job, which I believe, because she is back to a managing-editor position, which is her best and favorite skill.
My father sits in the same chair, in the living room, all day and evening, and sleeps. He slept today for probably 6 out of the 10 hours before dinner. He was asleep when I got up at 9, asleep when I left for coffee, and asleep when I woke him up to remind him that he had an appointment at the gym with his new trainer (my Mom signed them up for personal trainers). When I woke him, he denied being asleep, and when I frankly told him he had been asleep for over an hour, he was annoyed. He didn't eat enough during the morning, and I tried to talk to him about it, but got nowhere. All he had was an english muffin and a piece of fruit, saying "I worry mostly about my blood sugar." When I pointed out that he had lost a lot of weight and was not eating enough protein, and that blood sugar is fine and good, but the body needs nutrients, he was annoyed. He has lost most of his muscle mass and a significant amount of weight, most of it muscle.
So that's more or less the state of things at home. My initial impressions: not good. My mother has been difficult to talk to on this issue (as with most issues) and flutters around not having time to be cornered for serious questions. This is something her mother also did, and it's not untypical of my father's parents either. In a prive moment however, we did discuss things frankly, and she seems to be realistic about the situation as far as I can tell. She knows that my Dad's condition is going to require outside assistance relatively soon, and she promises to keep me informed on her plans in that regard. I told her the most important thing to me was that she not allow things to get too difficult at home for her before reaching out for serious help. She is aware that my father will require professional assistance at home before too long, but hopes that the time comes when things are better settled at home (ie, my sister goes back to LA for school, my other sister gets married and moves out, etc).
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posted
Oh Orin, that really sucks. Wish there was something I could do to help. Pick a one or two things to accomplish while you are home and focus your efforts on those. Try to get your Mom into a support group, she needs it and will need it even more in the future.
I worry about the clutter, it contributes to a general downward spiral. When my MIL and SIL were both ill, the house became overrun with junk. It contributed to my MIL's general depression and apathy. She was homebound but because of the clutter, her home was nearly unlivable. With all the rest of the problems, cleaning up the house may not seem like a priority, but its probably the most fixable problem around and will make more difference than anyone realizes.
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posted
I keep coming back to this thread hoping to have even bit advice, and I've got nothing. I strongly agree though with Rabbit's advice regarding cleanliness and choosing a focus. People don't always realize how much a cluttered home affects them. Some part of them knows, but many just have so many other pressing thoughts vying for attention that they don't dwell on it. It's only when it has been cleaned up that people feel a little better, and yet they can still easily let it fall into disarray again. I don't know if there's a focus group in your mom's area but I hope there is, and you can persuade her to go to one or two meetings with you just to get her started and so she can make friends.
I'm sorry I don't have the experiences to help you, but I'll talk to my parents and see what they've done for their own parents. My maternal grandfather suffered a serious stroke several years back and has progressively gotten worse. It seems like lately his spiraling trajectory has gotten worse. I know it's very hard for my mom whose memory bank produces a much different man than the current reality keeps trying to describe.
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Your mother signing your dad up for a personal trainer at the gym with him in the condition you describe does not sound like she's "realistic about the situation." It also sounds to me like he's already at the point that professional assistance would be a big help. How long is it until your sister's wedding?
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quote:My father is, as described, essentially a statue. He does not engage in conversation. If asked a question, he stares blankly at the person speaking to him as if he is being insulted, and has to be prompted several times to get a response. Responses are perfunctory, and sometimes they do not follow the question being asked. For instance, if asked how the weather has been, he will not respond, and if pushed, he will answer that he doesn't have any problem with the weather. In the past two days since I've been home, he has not asked a single question or shown a shred of interest in me past hugging me at the arrival gate at the airport. I'm not hurt by this, since the only contact I have ever had with him in the past seven years has been initiated by me, and I know it's an aspect of his condition, but the depth of the apathy is surprising.
It might seem supremely callous, but if this was what it were to come to in a situation I was in, I'd spend some time confirming that my presence and desire to help was neither productive nor appreciated (probably resented, in fact), then I would bid my father farewell, and leave.
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posted
I do have a family and friends in the area apart from my father. Though I think you're right, I'm here for the duration of my visit, which is a month. It's disappointing to say the least to consider the prospect of never having a meaningful conversation with my father again, but that is what this is looking like. He can't follow the thread of a simple conversation, much less venture to become interested in anything new.
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posted
Orincoro, I'm so sorry for you. I don't have any words of wisdom or advise. I pray I don't have to face the same thing with either of my parents that you are facing now. I hope you can get the support both you and your family needs.
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posted
I'm sorry, Orincoro. I have seen a similar progression in my own family, though not as close as my dad.
One of the things that helped a little with my grandpa was to try to engage his past. His older memories seemed more durable, more connected to what was left of his old personality. He liked to listen to chapters from his brother's autobiography, which had stories about when they were both kids and had various adventures together. It didn't fix the problems, but for an hour at a time it was peaceful, he'd be attentive, and often say (with a hint of surprise) "I remember that!" In a way it felt like a way to reach the real him. It was a nice way to think about it, anyway, regardless of his subjective experience of those story sessions.
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My Grandfather had type I diabetes for almost 60 years. The last few years of his life sounds a lot like what you are going through right now.
For what it's worth, we were able to have a meaningful relationship with him for those years - but it took a lot of adaptation. The person we loved at the end was not the grandfather I remember for most of my life.
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