help...family problems

[Lee73]

Hi All,

First I want to say that this site is great and all of you who post here are so helpful. I have been inspired by your strength and motivation time and time again.

I apologize for the length of this post... :(

If you read my post from yesterday you know that my Dad's condition is not so good, honestly it is terrible. I needed to vent a bit yesterday as I had just gotten back from a week with my family and a week of caring for my Dad (when I am home it gives my sisters a break, which is why I am trying to go home every week). While my Dad's health is bad and he requires constant care, that is only half the problem. At first, I didn't want to say too much (we've always been a private family, but...I am the black sheep..lol) but the bigger problem seems to be my mom's denial about the whole situation.

I realize that dealing with the impending death of a loved one is very, very difficult (and this is exactly what we are all going through) but my Mom seems to think that my father is going to get better. Beyond that she seems to think that she can continue working her full time job....and care for my Dad (which is a full time job also). And when she is confronted with the reality that my Dad is not going to get better she freaks out and snaps into denial. Needless to say, it is not even remotely working out. Me and my sisters juggle our schedules so that we can be with my Dad when my Mom is not there (five days out of seven).

One of the reasons my Mom continues to work is because it provides insurance coverage, however there are options if she were to quit or cut back to part time....medicaid, or more likely medicare. However, she refuses to look seriously at these options. My parents are both 70 years old. The result is that my sisters and I are doing a lion's share of the work to keep my Dad alive and functioning and I don't mind...this is a labor of love, but it is creating so much tension in our family. Even when my mother has days off she calls us to come and sit with my Dad so she can go out...just get out of the house because she can not deal with my Dad's condition.

The other day my father returned from dialysis really out of it...as sometimes happens and he couldn't administer his own insulin...well, neither could my mom. She ended up calling my younger sister who is also diabetic and had her come over to do it. I was floored that after 40 years of marriage (35 of those being type 1 diabetes years) my mother did not know how to give my father his insulin in an emergency. I always thought she knew how. So, of course, now when this happens she calls one of us...she says she wants to learn, but still refuses to do so.

Has anyone been in a similar situation, with a beloved family member in serious denial? Any advice on how to approach this? My sisters and I want to get together and sit down with my mom to talk about all this, but she has refused to do this too. UGH!

[lgvincent]

I'm not so sure about Medicaid. I've seen many stories over the last months about how states are taking people out of the Medicaid program to save money, and those with chronic conditions are the ones they are after. I know they are cutting people out of the program here and I saw a story (I think on 60 Minutes this past Sunday) how Tennessee cut the number of people receiving Medicaid (it's called something different there) by around 232,000 people. I'm not sure about dialysis, but Medicare doesn't cover drugs and this new drug program they have looks awfully expensive. It seems like you've got to pay an additional monthly premium for the drug coverage, then have a deductable (seems like I've heard it may be around $500), then pay 20% until the total drug bill is something like $1,500, at which point they don't pay anything on drugs until the total bill reaches another plateau, and then I think they pay 80% on additional drug purchases. I could be wrong, so I'll have to look around to see what the exact numbers are. The government is cutting all kinds of services to pay for the tax cuts, so I'm not sure what assistance it will offer.

[Lee73]

Hi LG,

Yep, we've been back and forth about Medicaid and Medicare. I have heard similar horror stories about medicaid. It seems, for many reasons, that medicare would be our best option. My parents already have some medicare coverage, so it would be an issue of applying for further coverage, so for many reasons this seems the easier option. Of course....it is up to my Mom to do it and....don't see it happening any time soon. Medicaid offers a much more comprehensive long term care package..including home care with visiting nurses. Of course, medicare does not. But well...ugh! If ever there was a time when I wished this country had socialized health care, now is that time!!!!

Lee

[CarlyesHope]

Remember the golden rule of grief (not sure of the order) Shock, denial, anger/guilt, depression, and acceptance (think this is the order)

your mom is in denial and for now thats okay so long as your family members are accepting the burden of caring for your father. She may continue in denial until well after your fathers death, so prepare for a long road. Your parents have been together for a long time and the pending loss of her life partner may be just too much for her to handle, deep down she knows. If it lingers on too long after his death, you may have to "get mean" to move her onto the next stage, which i hate to say but it sounds like will be depression.

A dear friend of mine went through the exact thing you are, and i'm sorry to say, the because his father couldn't get past the depression and accept life without his wife (married 55 years) his health quickly deteriated and he died just 9 months later. One thing my friend said was that he wished he had never pushed his dad to "come to terms" with his mothers death because thats when he gave up his "will to live" I mean he had really known no other life that that with his wife - 55 years of marriage - wow!!

I guess as long as she, your mom, is "happy" (sorry about the word choice), and isn't exhibiting any signs of endangering herself, and she still manages everyday life why force her to face reality? It may push her give up like it did my friends father.

It's a tough decision on when and how much to intervene in your mothers life. I wish you strengh and patience to do what you need to do to help both your parents.

Kelly

[Erin]

Lee,

I am sorry to hear about your situation. It is hard to watch a family member suffer like that, and it often causes the type of conflict you are describing. When my Grandfather was very ill (he passed away in 2000) it put a severe strain on my father and his sibling's relationships. Christmas that year was a cold, cold event. We wouldn't have even had a family gathering if it wasn't for my older cousins forcing our parents to 'fight nice.' (It's a large family, each 'generation' usually spans at least 2 generations, ie my cousin's son is older than one of our cousins.)

People handle it in different ways, some can't face what is happening (like your mother) and some try to take on the lion's share of the caregiving, whether or not they realistically can do so (like you). The people who react in opposite ways end up resenting each other. Try not to be too hard on your mom, she's reacting to a very real loss. Also, try to take care of yourself and the rest of your family, you need all the TLC you can get.

Would your mom's current insurance cover a visiting nurse service of some sort? It would not help with the underlying issues of denial and grief, but it might lighten the load that you and your family are feeling. (My grandpa had a visiting nurse, he was either covered by Medicare, Medicaid, or some insurance he got through the V.A., was your father ever in the service?)

You could also have your parents give you power of attorney for your dad, then you would be able to make medical decisions, as well as file for the Medicare / Medicaid that he needs. Do you think your mother would agree to that? Or can your father still make his own medical / legal decisions? If he can, you can do it over your mother's head, so to speak. I'm not sure what legal hoops you'd have to jump through, but i know it can be done.

My thoughts are with you
Take care,

-Erin

[Lee73]

Hi Kelly,

Thank you. Your words were kind and to the point.

My sisters and I have been walking on eggshells about this, for the exact reason that you mentioned in your post. I understand and even respect my mother's denial of certain aspects of my father's situation. In fact, each one of us has to deal with our own emotional issues regarding my father's situation, so it is completely understandable that we are going to handle it differently.

My worry is more about how my mother's denial seems to make her incapable of giving my father the care he needs. My sisters and I can't always be there and we have already had a few emergency situations when my mother is taking care of my father on her own. It is a big job for anyone, being a caregiver and we talked very seriously about my father living in a nursing home, but none of us really wanted this...especially my mom. Yet, now my Mom is not really coming to terms with exactly what "having him home" means. To give you some perspective on this....my Dad has been type 1 all my life (I am 31) and the majority of my parents marriage. In the last ten years he has suffered serious complications and especially in the last two years he has taken a serious turn for the worse. In other words...we all saw this coming in one way or another. I understand my Mom not wanting to or not being able to deal with it, but at the same time she is unwilling to admit this and just goes about as if she has it all under control, then we arrive at hte house and all is a total mess.

SO, my sisters and I just end up putting out fires (a la.."Lee, can you come over right away, your father fell and he can't get up and I need to give him his insulin and I don't know how!!!!!").

I love my parents very, very much, but I think if we do not find a way to meet everyone's needs this is going to end very badly. Already we are fighting more than usual, communication is not very good. I don't think it would be too much to ask to have a family meeting. I do not want to force my mom to come to terms with anything before she is ready, but, at the same time, I do want my father to have the best care possible at this stage in his life and that involves communication and all of us accepting, to some degree, things as they are, not as we want them to be.

Ooof, this is waaaaaay more difficult than I thought it would be, and for all the wrong reasons. Aghhhh.

It does help to have a sounding board, a place to vent and kind words and advice from you guys, thanks again.

Lee

[jdstein11]

Wow, Lee. What you're going through is an unbelievable burden that drains all aspects of your health - physically and emotionally. As with any situation, communication is the key to make sure everyone understands each person's perspective and feelings, so my only advice is to make sure that you share with your family - via a sit-down, if necessary - everything you're feeling to make sure your father is as comfortable as possible with the lightest impact on your family as possible. Part of that may be expressing to your mother that, while you and your sisters dont' mind helping care for your father, how helpful it would be if she learned how to give your father his insulin so that you can arrange your schedules to more regular intervals, rather than whenever called. These types of approaches often work well in situations where diverging interests and perspectives need to align to work towards a common goal. Whether we're talking about corporate teams or family crises, I think many of the same principles apply.

I hope you get through this with as little pain as possible. Good luck.

[Lee73]

Hi JD,

Thanks. You have pretty much hit the nail on the head. Even though we are all kind of dealing with this in our own individual ways, we have to pull together to get things done that simply must be done. As Kelly said (And I totally agree with) people do deal with things differently and denial is not uncommon when faced with losing a husband, father, loved one etc. My sisters and I understand and respect my mother's reaction to all this, but unfortunately there are still very real, logistical things that need to be taken care of daily and they are not going to go away. We have made ourselves completely available to my parents. My sisters live in the same town as my parents (one lives across the street from them) and I quit my job here in NYC to take one that is part time and more flexible, allowing me to go home part of every week. This has changed all of our lives in some pretty drastic ways. I agree that a sit down chat is totally needed, the question is how to approach it with out sending my Mom into a tailspin (she is totally and completely against the idea of a meeting of any sort, she get's defensive at even the slightest mention of such a thing). The last time I tried to talk to her it ended in tears for both of us.
I'll be headed home the begining of next week and again I will discuss this with my sisters and try to discuss it with my Mom. I'll keep you posted. Thanks again for the kind words.

[Lee73]

Hi Erin,

I am sorry I did not see your post earlier, but just noticed it now. You are right on pretty much all counts. As much as I hate to admit it, I am begining to feel resentful and I am not even taking on the lion's share of the work, at least not alone...my younger sister (who lives across the street from my parents helps the most and has dealt with far more than me). The point is, I see my family falling apart and it just hurts like ****. My younger sister broke down in tears after a particularly rough day of helping my dad and getting nothing but resistance from my Mom. It can't go on this way, but I don't know how to change it, none of us do.

Yes, it would be great if my parents would give us power of attorney to deal with things like insurance and Dad's health care needs, but again...Mom won't allow it. It is like she needs the illusion of control...even though she is not capable of handling it at this point. As frustrating as that is I still understand my Mom's need to feel in control of something at this point of her life and so, none of us push the issues.

I guess what makes this so hard, is that on top of dealing with the emotional aspect of loss...we are also dealing with the very real and equally horrible logistical aspect of loss...and it is like my Mom just cut and ran. SHe is not facing anything and not allowing anyone to help her face it or even face it for her (because that would mean admiting that she needs help).

As I said, I love my parents very, very much and nothing will change that but I am clearly going to have to calmly step out of the room and count to...oh say, five thousand, several times while dealing with this situation.

Thanks for your words and perspective and sorry it took me so long to notice your post.

Lee

[Mick]

Lee--

I'm sorry you are going thru this--it's never easy, but it can be made easier in many ways. This may be a brutal thing for me to say, but the behaviors of you and your sisters are the lubrication which enables your parents to continue in their denials without any need to change. You are enablers. Changing your job and moving, when your mother would appear able to take care of dad--well, you certainly get the good-son award for it, but it helps neither of them. Now at this point, bailing out and leaving them to face up and hold the bag may or may not work--that "old dog/new tricks" rule might just prevent them from dealing with reality by now. Both my parents died slow, difficult deaths, my mom at age 70, my dad at age 60. They died of lung cancer. All during my dad's illness, my mom NEVER would stop smoking. After he died, she would not stop. When she got lung cancer, SHE WAS SHOCKED, and still would not stop. She continued to sneak cigarettes unitl only a few days before she died. So, believe me, I DO understand first-hand parental denial... Stubborn people. who just happen to be our parents, do not make good pupils if you want to teach them anything. In this I found that actions spoke much louder than words--when I consistantly refused to bail my mother out--and enlisted my sisters to toughen up as well--well, those times were some of the few instances when my mom admitted that she had something to do with her situation, that she'd made poor choices and now had to deal with some consequences. I teach Special Education, and that's always our first order of business--the only lessons that are ever learned are the ones that have some meaningful consequences. Until your mom and dad get some reality-check, it's useless to talk, and at this point, how cruel is it to begin that reality checking...?

Sorry--I guess I understand the issues, but have few answers for you.
Good luck, and remember--"happiness runs in a circular motion"
Michael
T1 since 1965

[lgvincent]

I found this a little while ago, it is from CNN and is dated June 18, 2005. I don't know if it is current or not:

After the beneficiary pays a $250 deductible, Medicare pays three-fourths of the next $2,250 in drug costs. There is no benefit between $2,250 and $5,100, a $2,850 gap in coverage.

[Lee73]

Hi Mick,

Your words aren't brutal at all. I realize they are coming from a place of experience. I am sorry to hear about the passing of your own parents. It must have been very difficult.

I realize that my actions and those of my sisters sort of make us out to be enablers, and perhaps we are (however, I would be the "good daughter", not son, don't worry this happens all the time with a name like Lee, lol). You are right that it is probably too late to make any signifacant change in that relationship.

I just want to be clear on one very important thing: As frustrating as it can be I am grateful for every extra moment of time I have with my father. We almost lost him a year ago (when I was a Spain). SInce then I have made very concious decisions and do not regret a single one. It is extremely meaningful to me, to have time to spend with my father.

My mother is Italian and extremely traditional and family oriented. I was raised with the idea that family takes care of family and that is just the way it is. I understand that many of the frustrations and tensions arise from the emotional toll that losing a loved one places on a family. It is, in many ways, bringing out the "worst" in my Mother and we are all trying to be very patient about it.....it is just very difficult when it impedes my fathers care (that is the only time I kind of lose it). Yep, stubborn people, indeed.

I realize, also, that as sad, frustrating and emotionally draining as this is, it is also a natural part of life. Up until recently, I have been much less involved than my sisters (I went home when I could and always with the sole intention of spending time with my Dad). It is only recently that the situation has sort of gone from bad to worse that I have made myself much more available....and realized just how bad the situation actually is.

I don't think me and my sisters can even remotely attempt to change my Mom's way of dealing with this. I had just hoped that for my father, we could pull it together a bit. I'd hoped that we could reach a kind of common ground, but....well. We'll see.

Again...your words weren't brutal at all. I appreciate your wisdom and experience.

Lee

[Lee73]

Hi LG,

Yikes! Ugh Medicare, Medicaid....blech. I have been researching as much as I can online....you know I love it when a website actually has a glossary for terminology, you just know ahead of time you are not going to understand a thing. My Mother has an appointment to meet with Elder Services (a godsend!) to discuss her insurance options next week. This is something we have been pushing her to do (my sister made the appointment and is physically taking her to it to make sure she keeps it). Hopefully it will be a productive appointement. Will keep you posted. Thanks for the info.

Lee

[CarlyesHope]

Lee,

Good thing you clarified the "good daughter" aspect, because now we know, and sorry about this guys, that we are also dealing with compassion.

Yes, women are far more compassionate then men so you are natually going to try and step in and find a solution to this. Unfortunatly, it doesn't look as though it's going to happen, so perhaps instead of trying to "force your mother into reality" you should focus your energies where they would be best served - with your father. You have stated that you now cherish your time with him, so do that, and let your mother deal with this the way she needs to. You know she is unwilling or unable to help you and your sisters, accept that and get with your sisters and come up with a solution that best serves the person who most needs you - you dad. Let your mother fend for herself, she will have "face the music" sooner or later and will ultimatly be the one who realizes she wasted what precious time her husband had left.

You and your sisters can only do so much and right now your father needs all the energy you have to spare. Your mom is an adult and can take care of herself and make her own decisions allowing her to do so will reduce the amount of stress on everyone.

Again, I wish you strengh and patience while you care for your father.

Kelly

[Mick]

Lee--

Sorry for the gender confusion on my part--I agree with Kelly--it DOES make a difference between sons and daughters (not that it should) insofar as emotional response and "obligation" to parents. Sons tend to send money, ideas, advice, daughters tend to send themselves. I know about all this pretty first-hand, having gone thru it with both my parents and my in-laws, with several sons and daughters on both sides. There is a connection daughters have with their dads (or should have if all went well...) that is very special, and which I'm beginning to understand now that my own daughter is grown and on her own. She was just here for a week, her first trip home since college graduation. Both my wife and I have gone through significant health issues during her growing-up, the most difficult of which was my wife's cancer diagnosis and treatment, which happened while our daughter was on her Junior Year Abroad program in Africa. This only a few years after my heart attack and triple by-pass, so I think our eldest has had at a young age some of the same parental realities to face as you and many others with much older parents (we're both in our early 50s.) ANYWAY, on her most recent visit, our daughter was such a 'mensch' (Yiddish for 'person'), and I began to appreciate that even just out of college, she sees herself taking care of me at some point in her future. I intend to do everything to prevent that from happening of course, but I do understand it now. I 'get' your concern and involvement with your dad--but from the viewpoint of the dad at this point...! I also more than understand the point of 'spending time', especially if it's understood that time is limited. I wish that I'd spent more time with my dad when he was sick, but my mom was young and healthy then and did everything herself, finally taking a leave of absence from her own career (she was a school principal) during his final few months. I was not driving distance away, had little funds for plane flights, and was able to visit seldom. Those regrets can never be erased. Be with dad. (I'm smiling thinking about the time I just spent with my daughter now...) It's gonna be a mess no matter how you slice it--that appears obvious--and if your presence in the equation is important and necessary, then there is not much to fix. There's a lot to learn about helping someone handle diabetes, what with all the significant issues regarding testing, injections, diet, hypos, infections, etc. the more you learn, the better able you'lll be to really help.

Good luck--I hope my own daughter has the stuff it takes when the time comes, the stuff you obviously do have...

Michael

[Lee73]

Hi Michael,

Thank you for that lovely post. Your daughter sounds like an amazing person. I agree that, for whatever reason, there is a special bond between fathers and daughters. My father has four daughters (no sons)...maybe that is why this has been so very emotional (not that it would be less with sons, but..).

Two years ago one of my best friends lost her father. It was a sudden sickness and an unexpected death. It happened very quickly. She lived far from her family and was unable to be there when it happened (it was that sudden). The sadness and shock of losing him so suddenly was worsened by the regret she felt at not having had a chance to visit him before he died. I feel like my father's condition is a sort of mixed blessing...yes, it is awful to see some one you love suffer, but, at the same time, I feel grateful to have this time to spend with him. And that is what I intend to do, not matter what. I had a rough time with my Mom the last time I was home (less than a week ago) and it really got to me...so, I vented, but ultimately, I do understand her reaction to this and it doesn't change my intentions with my father.

Well, just to confirm my "daughter status" I posted a picture of me and my dad in the "name with face" thread. The picture was taken over a year ago...when he was still up and about. Amazing how much can change in a little over a year...he had heart attack, triple bypass and kidney failure about six months after that picture was taken.

I am sorry to hear about your own triple bypass. I know from experience...you must have given your family a big scare with that one. How are you these days? Did you have to do cardio rehab?

Thanks again,

Lee

[Erin]

Lee,

I don't really have much to say by way of advice (I got adviced out in my last post :) ) But I just wanted to let you know I was still thinking about you. I hope your mother's visit with Elder Services is productive. All your sisters and you can do is be there for each other and for your parents. You seem to be doing that, it will be hard, but you'll get through it. It may not seem like it at times, but you will. Your dad is lucky to have such wonderful daughters (and sons can be wonderful too... grandsons too (although at least when the grandchildren were concerned, it was birth order rather than gender that was the deciding factor) the gender stereotypes don't always play out in real life... my family is living proof of that!). I got side tracked, sorry. Back to what I was really saying.

Your dad is lucky to have such wonderful daughters, and you are doing such a beautiful thing by visiting him and tending to him, and to your family's needs. It really makes a difference. Your family will get through the rough road ahead of you, and you will be stronger for it. And you are also fortunate, as you said, to have this extra time with your dad. Cherish the time that you have.

My thoughts are with you,
Take Care,
-Erin

[jdstein11]

Good luck with the ES options, Lee. My best friend lost his father just over a year ago to a relapse of multiple myeloma (sp?) and he, like you, tried to spend as much time w/his father over the last year of his life, jumping across the country from his job in Phoenix to his parents in Endwell, NY (near Binghamton), every chance he got.

Taking a lesson from my friend's experience, his two sisters were local and his mother (a registered oncology nurse) and all seemed to have had much healthier attitudes than your mother, but the point is that my friend knew the end was coming and made it a priority to spend every possible moment with his father before he passed. From these moments came some incredibly memorable conversations and insights that he gained into who his father was that will last the rest of my friend's life.

From your posts, it sounds as if, while you're trying to get your mother to deal more with your father's situation, "being tough" with her may impact your father's care, and if he doesn't have much time left, I'm not sure how that will help anyone. It's really a tough call to make, and I certainly hope that you find the strength with your sisters' help to make the decisions that will be easiest for all of you to live with.

Best of luck.

[Lee73]

Hi Erin,

Thank you for the thoughtful posts. It has done me a world of good just to have this space to vent (sorry :( ) and to get all of your perspectives and some sound advice. We do talk about this a lot in my family and I have my friends and my husband to support me through this time, but still...sometimes they are all a little too close to the situation to see it clearly (and for that matter so am I at times).

I do very much cherish the time I have with my Dad and I understand that his worsening health will inevitably cause various tensions as we go through this. It is normal. I am going to do my best to stay focused on what matters to me throughout all of this, and that is to spend as much time with my Dad as possible. I will keep you all posted on his condition and the insurance and my mom, etc.

A bit of good news yesterday...my Dad is doing better with the dialysis. He had switched from peritoneal dialysis to hemo dialysis two months ago and it was a rocky ride, but he seems to be adjusting as of late. Normally, the day after dialysis he was so weak he could not even speak...but that seems to be changing. And that is a little ray of light.....

Thanks again Erin.

Lee

[Lee73]

Hi JD,

Thanks. Like your friend I am aware that the time I have with my Dad is precious and I have made concious decisions to spend as much time with him as I can. I feel very good about this.

I realize that expecting my Mom to deal with this the way that I am dealing with this is ridiculous. I am really going to try to be patient with her and with the situation. I am going to try to help her (as much as she will let me) with the logistical things that must be done, but, as I said, my priority is spending time with my Dad.

Yes, I really hpe that we will be strong enough to deal with this with as few tensions, arguments etc. as possible. I am going to do my part...the rest, well, we'll see. I'll keep you posted on how the meeting with Elder Services goes.

Thanks again,

Lee

[jdstein11]

Good luck. We're always around if you need us.