How much influence do your parents have over you and your decisions regarding your LO?
For quite some time now my parents have been increasingly adamant that this relationship (H has FTD) is killing ME.
As background, they are in their late 70's, healthy, and are comfortable.
Their verbalized concerns are increasing. They have long believed he was faking this, at least at the beginning. Well, he can't have faked what the tests show.
But now their focus is more subjective. They say that H is selfish and lazy, and that "IF HE REALLY LOVED YOU, he would not subject you to this life; he would want you to have a future".
What do you think? Do any of you get this stuff from your parents? If not your parents, your siblings, your children?
Both my parents were dead before my husband was diagnosed. One brother and his wife told me a few years before the diagnosis that there was something seriously wrong with my husband, and that they had thought so for a number of years. Two of my children urged me to put him in a care facility within a year of his diagnosis because of his behaviour, the amount of care he needed around the clock, and my own physical limitations. To try to answer your question, I probably tried too hard and too long to give him the best of care and at too high cost to me because of my mother's training to care for others while sacrificing yourself (Irish martyr syndrome), and my nurse's training added that other dimension of being the patient's advocate. Many of my husband's friends told me that he would have wanted me to have had more of a life myself and not be tied down and become as worn out. Is it possible that your parents just want you to have more of a life and this is their way of saying it? In other words, less of a criticism and more a concern?
abby--Many of us have people in our lives, like your folks--some mild, some rabid. It can be very hard to deal with them, I know. For me it's Dh's sisters. They do care,but...they have no clue to the reality, and what they think they know has no place in our reality. As much as possible,I try to minimize contact. Keep things light. And when possible, keep the peace and keep doing what I need to do anyway. Not as easy as it sounds. My DH's sisters have gone so far as to provide a used powerchair after being told he can 't have it; hiding in our garage and pursuading DH to keep it a secret. When I found out, I called and told them to come get it. When they didn't show up, I called and offered to get rid of it for them. They came and got it, and dished out a scathing diatribe on my disrespect for their life schedule, when they didn't have in-home help and couldn 't sit around----they had to worlk. The latest is that I am the root cause of his condition because of all the meds I hav e him on. There's way more. Asmuich as possib leI havevewry ;little contact with them. They are DH's family, and he needs some contact. I'm still tripping on a fine line dealing with them.
Maybe if you respond to your folks about your DH's condition, with"The Dr. says. ..."Give them copies of information about the behaviors.. Always, keep in mind though, your main focus is your DH. You can direct them toward info but you can't let placating them interfer with that. You could try inviting them to help you--they'd get a taste of reality. Or(more likely) you'll need to widen the distance for a while.
I have a different question. Did your parents do what their parents said when they were in their 50's? Probably not. Most parents have one way vision. They talk about how their own parents are interfering with their life in front of their teenage children and then interfere with their grown up children's lives in exactly the same way. It's not a popular thing to say but it is true.
The depth of the experience of raising children changes most of them forever. When you speak to grandparents you can count the minutes before the grandchildren enter the conversation. All as it should be in family ties.
The comments suggests the question is should we listen? And I think the answer to that is three fold. The first aspect is should we listen? Absolutely. The second aspect is do we have an obligation to follow their advice. Not at all. And the third is what should we do? Whatever you decide.
At some point in our lives we take on the mantle of adulthood and if we do not then we are not adults. What that means clearly is we make our own decisions and live with them. All parents agree they are adults. Few parents agree they should behave the way their own parents (your grandparents) say. That however does not apply to you because you are downstream on the timeline. As I said, this mindset works in one direction only.
Your parent's comments don't appear to be objective. He's faking it and when that's proven untrue he's now selfish and lazy. Obviously they don't want you to have to face this as any parent would and that's understandable and clearly the other comments are personal.
My comment is that you are free to do what you want. People make their own decisions whether they admit their reasons fully to themselves or not. That's not the point. The point is that you are free to do so, free to find your own reasons, and free to see your life as you see fit.
Every person here has chosen their own path not in the sense of laying out a plan for the future but in the truth of what they do each day. In my experience people are uncomfortable generally with admitting that to themselves and that's fine but when the moment comes we either take the action or we do not and that is simply self evident. We decide each moment and that forms the path of our lives. (This is also one directional but the opposite - we look backwards to see where we've come.)
And no one knows where they are going to whatever we say just as almost no one writes a book detailing what they'll be doing the next few years. Only where they have already come and that's interesting but not that helpful.
My parents have passed away. My mother was advising me right to the end. My father advised if asked. I listened out of respect and sometimes they had great advice. I know one thing for certain. Your parents don't know what you will do. Neither do you.
As Nikki said some time ago, "If you want to make God laugh, tell him your plans."
The final comment is none of us do. Life is designed that way by time itself. Every step we take is an act of faith that as we allow ourselves to fall forward our leg will come out and stop us (the act of walking, take a step and as you move forward imagine NOT putting your leg out - oops).
Now imagine your parents as toddlers moving across the floor in diapers learning how to walk. That's perspective. At least in my book it is.
I think they love you and are trying to protect you. They do not think much of the man you married for what ever reason. This is where you and your parents have different points of view. You have to do what you know is best for your husband. They need to back off and respect your decision. They should go as far as to support you in your decision.
there are many reasons a parent would be concerned over their child becoming a life caregiver over a terminally ill patient. and it may be appropriate to mention that if the parents are healthy and active leading full lives, it can lead to a guilt trip for them to see you trapped by the caregiving and your future. some of my family earlier on, all thought i should place my DH as well so i could move on with my life as i am much younger than my spouse. unfortunately for them they didnt get the picture that i loved my spouse and intended and wanted to care for him til his last breath, whether home or placed. its important for you to tell them that this is your choice as wife to make the committment to care for him without interferances, and if they really want to help you then support you in your decisions. and that while they may not agree, this is what you ask of them. its natural they want the best for you and seeing you distressed and anxious will bring on their own anxieties. most folks understand better if you sit them down and let them knowhow how you feel and what are your committments for the now, and possible plans for the future. while i agree its difficult for them to see whats happening from afar, you are not only their child, but an adult woman who should be making the decisions for how to best move forward for you both. as plans can change you can keep them informed and ask that they lend comfort and support along the way.
abby-I certainly understand what you are talking about-when my dh got soooooooo bad with this disease my 93 year old mother said -"you need to put him somewhere now before it kills you too" Now I know she meant well ( for me) but I told her then and have repeated many times"what would you have done if this were DAD" she kindof changes the subject quickly. I know they mean well but sometimes MOM does not know best. Good luck !!!!!!!!!!!!!
Abby, my parents are gone so they are not a problem. My sister was. She came to dislike Gord and while I knew that she cared about me, I felt her judgement was flawed because of the feelings she had had for him for some 20 years. I didn't trust the judgement of people who already had an axe to grind. I told her that frequently during the last couple of years. I told her that she had pushed me and pushed me to place our mother. I am still living with the feelings of that placement not her. She had moved to the other side of the country leaving me to manage. As Wolf says, listen and then do what you feel is best.
I personally liked what bak said. Why don’t you turn it on them and ask them what each of them would do if the other were in your position. I think people in general give us advice not even thinking of what they would do in our “shoes”! I guess to be fair we all think we KNOW what we would do in any given situation, but it’s not necessarily what we actually end up doing when confronted with the situation. abby I know this has to be hard for you especially if you have been close with your parents, but like everyone else says, you need to do what is best for you & your DH.
Sifting through all of the comments, I think that moorsb hit the nail on the head. For whatever reason, it is apparent that they do not like your husband, and feel that your entire relationship with him has always been bad for you. I cannot imagine parents, no matter how concerned for their adult child, telling them that their spouse is selfish and lazy when said spouse has a terminal, degenerative brain disease.
So, no, you do not need to listen to them. You need to do what you feel is best for both you and your spouse. That said, I do believe that if it becomes too much for you to handle - in YOUR opinion, not theirs, you should look for placement.
My parents were both gone by the time my DH was DXed. I think back to when my parents were in need of help, my dad just being in his later 80s and just before my mom was DXed with ALZ..she thought they should be in assisted living or nursing homes..dad always said a NH was a death knell..so we kept them at home..My sil at the time didn't want the responsibilities my brother would face ( I live in another state across the nation from them)...but together I did as much as I could making trips to help out often all alone with the two of them...my sil, when I was there, never so much as brought a can of soup to help or call to ask I we needed anything...that is a whole nother story there)..by the way their conditions would not permit them to be in the same facility. So as to my DH, well my brother almost never calls or writes, busy lawyer you know, sil now deceased from lung cancer. Husband's one brother does come to help out and gets it, the rest don't really get it including his kids. To be fair two live overseas, one on the East Coast....but they go about their lives knowing dad has this disease but the contact they should have with him, they don't..Now and then one will pop up with a suggestion which I dismiss out of hand because they are talking through their hats...they have their lives of trips and social events and fun and kids etc all the normal stuff and I am in the middle of this hell.....my hell is not their reality. So I soldier on as best I can and when the day comes they voice regret at not having called often enough or taking time to save for a trip to see dad rather than the beaches of Fla or wherever...that too will be dismissed by me..They will have to live with that reality. Friends are another thing...for the most part they don't get it either...they are not in town...they know what ALZ is but when they do talk to DH on the phone he sounds so normal...Most recently some friends in WA were on the phone talking about their grandson who will make Eagle Scout this spring..asked DH who is an EAgle to come...nice invite...then in a call again the same thing came up and DH sounding so with it was making arrangements that would be forgot as soon as he hung up...So I finally sent them an email pleading with them not to bring up that subject again...I laid out what is going on here...and the fact that I cannot find DHs Eagle Scout sash..( this is driving ME nuts) and that to continue to talk about this is going to add to my stress levels they cannot imagine. I didn't hear from them for some time..then sent an email with an interesting article to break the ice and then asked how they made out with the recent storms and put in some info about DH..Got an email back with the word they are coming south for a granddaughter's graduation and want to stop by and gave me the dates..I sent word this would be great but to confer with me only about times etc and that I would tell DH the day they are to arrive..That works best now..
It is amazing how people who don't know what it is like to deal with this disease are so full of well intended advice to include telling me that if I repeat things often enough he will " get it"....
The last thing I would want to do is offend you.I find myself wondering if they could have some type of dememtia.This as we all know is not the way most people think.
I'm sorry your parents are not understanding. My parents are in their 70's and have been very supportive of me and my husband. I don't know how long you have been married, so maybe that has something to do with how your parents are feeling. My husband and I will be married 33 years this Feb. 10.
I agree that maybe if you turn it around onto your parents as to what would they do if it was one of them, they may understand a bit better. Also, if I remember correctly, your husband has a form of frontal lobe dementia. Maybe if you give them information on the disease they will understand that he CAN'T help how he acts. A good pamphlet is available either by mail or you can download it and print it out at
Much food for thought. I preface what I am going to post based on exhaustion, which today has almost nothing to do with H but instead with my medical appointments and treatment.
I have to "give it" to my parents on one issue. They have thought about their end of life issues and to be truthful, I cannot complain about either their thoughts or their decisions. Father retired about 10 years ago. Neither he or Mother wanted to ever be "a burden" (their words) to anyone so they bought into a complex: I think it is called "progressive living" where there are many different levels of care- from independent living through AL through NH through Hospice. They have said that they do not want to be a burden to anyone so that one of them can live there at one level and the other at another level if that comes to pass. They are both strong believers in hospice.
I never knew any grandparents, at least not that I can remember. Both parents are the youngest of four or five siblings. I have a vague memory of a grandmother in a NH and it is very vague.
You are correct in saying that parents never liked H. After reading the posts here, I have to say that their reasons have merit. I have read here about marriages that seem to me to be amazing, and others that have to have been more than challenging. Mine falls somewhere in between. H acted in many wonderful and considerate ways; he also has been selfish and self centered.
In other posts here, not on this topic, comments have been made about how some confer "sainthood" on spouses following a death. Years ago, my therapist told me that I must process that H was "just a person who got sick". "Getting sick" happens to the best and the worst of us and anything and everything in between.
Has H been good to me? Yes. Has he been less than good? Yes.
I want to draw one of those geometric shapes that I don't even know the name of: one side: self, another side; spouse, another side; parents, another side ; past, another side; future.
My adult children were very aware of what was happening to ME. They were wonderful to DH and always available for an emergency or just to talk things out. However, they pleaded with me, "Please, Mom, we don't want to lose you to the same disease.' They knew he needed placement for ME, the doctors knew, but I resisted until my body just said, NO MORE. My children loved their father, but they loved me as well.
Don't know how your parents feel about DH but I believe I know how they feel about YOU. My daughter has gone thru some tough times, I have told her ONCE how I felt and that I'd always be there for her, she had to do what she had to do. On other topics, my mother was like yours in that I could tell her to please stop talking about something that bothered me, but she could not stop. So that part I understand all too well, and bottom line, we have to do what we feel is best.
Your parents don't fully understand, that's a given for most, but how do others think you are doing? Doctors, other family? I disagree from personal hindsight that your first obligation is to your DH, it really is to yourself. DH will progress no matter where he is or who cares for him, if you get sick, he'll be cared for by someone else. It sounds so selfish, so guilt producing to say it, but your life is as valuable as his. Your parents love you and don't realize they're not really helping, and maybe have good reason to dislike DH, but that's not the issue. The issue is: Is your future in danger? Objectively, how are you doing, and how much longer can it go on? You haven't told us what you think your caregiving situation is. None of this is easy, I'd never say otherwise or disagree with whatever a CG does to get thru this. I know it's the hardest thing to do, but take care of yourself, too.
I was lucky. My mother never liked my husband, but she is starting towards Alzheimer's herself and she and my husband are about on the same level cognitively and now get along very well.
abby, both my parents were gone by the time DH was diagnosed, so in my family it's my sister. I have struggled with a debilitating physical illness for almost 40 years and now that DH has dementia (FTD) she feels it is unreasonable for me to care for him (with help) because my own health is deteriorating. She doesn't remember the times DH took care of me after surgeries, etc, she only remembers when he was constantly being fired from jobs from 2000-2007 and that I was the sole breadwinner inspite of my health problems. Yes, the words are the same - he's lazy and selfish, that's how she sees it. But looking back now, he was dealing with MCI and the beginning stages of FTD during that time frame; we just didn't know it. I doubt I will ever change her mind about the situation...I've asked her not to give me her opinion anymore because I get how she feels. I do believe she's worried about me and does not want to lose me to this disease too. She can't change the outcome for DH but doesn't want me to be collateral damage.
I have to say that I am truly blessed. My parents are helping out tremendously! (mom=79 dad=83) Rita has been staying with them all this week (pseudo day care) We do need to find a real day care but there is so much else happening right now.
They have never had any problem understanding that she has an illness. I continually teach them about AD care and interaction and most of the time they get it. (I have to help them sometimes with the interactions) She says that Rita is becoming the grandchild she never had. (whatta attitude!) THANKS MOM & DAD!!!
This is all with Mom having a twisted back and degenerated hip that cant be replaced (she can stand up and uses a walker for all ambulation). And dad is begining to develop dementia symptoms of his own. (probably more senile and not true AD, but still periods of confusion)
The hope is that PERHAPS we can come together in the new house and live like one big care center(!) Jim
Jim, God bless your parents & God bless you. I have some support from my children, but it sounds like you have wonderful support from your parents. I hope that your plans to all live together in your “big care center” works out for you. It sounds like a win-win situation for everyone.
Yes, my parents now only remember the last few years as well.
Mother is very invested in my "failings" while Father is not so much. He will not disagree with her but will only accept, and never argue with her assessment of things.
It is just sad. I know my marriage is not fairytale and that H is not my soulmate. ( I had one; he was my soulmate but I was not his.) But, I want to be a good person and I want to be ethical and kind. On the other hand, or maybe it is the same hand, I have a sense of self and am trying so very hard to reconcile self with karma and zen.
As Wolf mentioned, mother will give advice while she has breath, and there is no indication she is close to being done with that!
I would love their support, but have to accept that I will never have it.