Hi there
I am not even sure what I am writing about, I just feel the need to get some stuff off my chest that has been weighing on me. My fiancee's mother was diagnosed with Alzheimer's disease last year--she is only 64. Right now, she is in the mild stages. Often times, she seems completely normal and she does not require any sort of extensive care. My fiancee and I work online and our lifestyle involves living our dreams of living abroad--we jokingly call ourselves ''citizens of the world'', because we love to hop from one country to the other. His mother was first diagnosed when we were living in Asia. At the time, we did not think to come home as it was not like she was in a serious accident or diagnosed with advanced cancer and expected to die within a month--in those cases, we of course would have been on the next plane. Also, our financial situation was a bit tight at that time, and we could not afford to live in New Jersey.Things are better now but if we had to settle there permanently, it would put a bit of a strain on us,which would just make everything worse.
We came home about a year after the diagnosis and his one sister totally went postal on him (naturally since she held these feelings in for over a year), saying he was this horrible, selfish person for not coming home. We were in the States for about two months, and recently left to take a short 2-month trip out of the country. Again, his sister is going nuts on him, thinking he is abandoning his dying mother. I understand she has a serious condition, but she may be afflicted with this disease for another 5, 10 or even 20 years. The thought of settling back in NJ for an indefinite amount of time to participate in her care is not something I think I could handle; it would require us to totally give up our lives, lives we worked so hard to create; if we were settled there with jobs and a house, that would be totally different, but that is not our home anymore. I know there are lots of people who live a distance from their sick parents ,and many of them simply cannot just leave and move back home, and with good reason. I think I am reasonable in my apprehension about creating total upheaval in my life.
If she had something like cancer, where she was only expected to live another six months or something like that, I would totally be okay with staying there awhile and doing anything I could to help her. I do care about her, and I have compassion, but the idea of totally giving up my life possibly a decade or more because certain members of his family feel like he should be home during this whole time is just too much, and I fear it would put a horrible strain on our relationship. He loves his mother dearly, but totally abandoning his current life for god knows how many years is not something he thinks he could handle either--we are only in our 30s and never anticipated having to deal with something like this at this point in our lives. . His father is alive and in good health and he has a sister that has lives right around the corner so it is not like we are the only people who are available to care for her. I do try to help in other ways, such as doing extensive research on the internet about supplements and other complementary treatments that may help but so far, I do not think they have tried to experiment with any of it--which frustrates me because I think they should at least give something a shot to see if it makes any difference, but that is really not relevant nor is it my place to say anything.. Giving up the life we have now would no doubt make both of us miserable and I know my mental health would take a huge hit.
On one hand, I understand the point of view that people think we are obligated to care for our parents when they age and get sick; but, when that care requires us to totally give up our own lives and tend to them every second, that is a different story. Yes, our parents took care of us and made sacrifices, but raising a child , which is hard, but comes with many joys, is not the same as being a caregiver to seriously ill adults. i have chosen not to have children because my life goals and ,more importantly, my temperament and personality, really do not gel well with parenthood; I think it would put a serious strain on my mental health and I think it would compromise my ability to be a good parent. Everything that I fear, and know is not good for me would come to pass with this situation in one form or another, and I just know it would be a disaster.
I know to a lot of people I sound selfish and evil, but from reading this forum the last couple of days, I also know there are a lot of people on here who can understand how I feel and I guess I am just looking for other people's thoughts on the situation. We cannot control feelings and these are mine and I am just being honest about them.
We totally get it.You don't want to interrupt your life.It wasn't supposed to work out this and now those who will be filling the job as caregiver are loading you with guilt.
Their afraid.It's frightening alzheimers tends to run in families.They are looking at at their possible future and they'd rather not. They didn't plan on this either.
Generally the sufferers of this disease live a long life.Go easy on those that will care for her.They feel selfish not wanting to do it so they want to share the guilt.
I find myself hoping two things - one is that you have had half a chance to communicate with sister that moving back to New Jersey and stopping all travel indefinitely is not what you tihnk you can or should do. But two it that you can find ways to make real susbtantial contributions both in terms of regularly spending **some** of your time in New Jersey and helping make good memories with Mom while she still has some abilities left, and maybe financially; even though lots of care is not needed yet, socking away some money for later on when it will be, might go a long way towards mending fences.
Finally, researching coconut oil and other supplements may not be a bad thing, but research assisted living, Medicaid, Medicare, POA, elder care attorneys and all that too! Helping to get the papers in order in advance - now - without Mom or Dad getting taken by unscrupulous salespeople who prey on folks in their situation - would be a huge blessing to all.
Here I am, 10 years and 3 months later... floundering about, wondering just what in the h*** am I going to do now. When mother died (4 weeks ago today), I lost my entire existence. I had spent so much time taking care of her, that I lost sight of who I am. For almost 2 years I've lived in her house and taken care of her non-stop. But there were 7 years prior to that that I was still able to take care of her without putting my life on complete hold. Sure, I had to check on her and help her with a few duties... i.e. cooking, laundry, housework... but I had it pretty easy for those 8 years... The 8th year I had to provide a lot closer supervision because she started wandering and getting violent. Then BAM! She broke her hip and all H*** broke loose!
My point is this... it was MY choice to take care of my mother. I made her a promise and I followed through on it. It is not MY choice, or SIL's choice, or anyone in the forums choice on whether or not you should move back and take care of a woman who REALLY doesn't need your help right now. It is YOUR choice, and quite frankly... IMO... you need to do what is best for YOU and YOUR FIANCE! SIL will either adjust to that or not... that's HER choice. But... please, please, PLEASE don't feel guilty over living your own life!
Have a GREAT day!
Thank you so much for your thoughts. I guess the crux of the issue is that we do not feel like making such a drastic change at this moment in time is necessary while his sister is thinking she is dying right now and our not being there means we do not care; by time more extensive care is needed, who knows...maybe we will be back in NJ, and if this is the case, there would be no question of providing assistance to a degree I feel capable of.
Do not worry Jinx...I know that most people here are primary caregivers and I cannot imagine the stress of that. And you are right, it would be annoying for people to tell you what you should be doing, which is why I never say anything. I just send over information that I find interesting and they can do what they will with it.
Ellen, you are right about keeping aware of everything that is happening. I understand his sister is dealing with a lot and I have a great deal of compassion. Unfortunately, she does not want to speak with us--I see she ''defriended'' me on Facebook, so we all know what that means,and her brother has reached out to her with no avail. While we can see her point of view, she cannot see ours at all and thinks that we are just ''wrong.''
TiredinAZ; The fact that you made that choice is admirable and I truly mean that. I see people on here give up everything to care for their parents and I cannot imagine the difficulty of it. I decided not to have children because I do not think I could handle it and this situation is leaps and bounds harder--how some see it as comparable is beyond me. I think assisted living and nursing homes are acceptable alternatives, particularly when such extensive care is required, thought I know that is not always an option for people financially.
Thank you all for your input..it really means a lot. I know my situation does not exactly evoke sympathy from many on here due to your extreme struggles, but the fact that so many can understand my concerns shows me what kind and wise people you are.
First, you have nothing to feel guilty about, even if MIL was in late stage Alzheimer's you have to look out for yourself first. Those of us who are primary caregivers have made a CHOICE to do so. No one forces us to rearrange our lives for our parents. We do it by choice. Most of us have parents who would be fine in a nursing home or group home if we weren't there. If anything the only ones to blame are ourselves for having to strong a sense of responsibility or to much guilt over not wanting to abandon them.
Yet is it abandoning? I know my parents brought me up to work hard, achieve, succeed and have a strong self worth. If anything they succeeded in spades. I have a great career and great plans for the future (someday when I'm not a caregiver). But this choice was mine.
Being single and childless and working for a national company with offices made it easy for me to move down here. But if I had no job lined up, no money, no hope of affording it, what would I have done? Probably not moved. This has been the hardest 13 years of my life, I love my folks yet I'm at my end (see my other post the other night that's almost suicidal). I made the CHOICE to be their caregiver at great personal cost, no life, no partner, no kids, lower income and I'm an emotional wreck.
How can I blame anyone for not making the same choice? The OP here knows what she is capable of, knows her finances, knows what she wants out of life and has a plan. Saying she is selfish or inconsiderate is way out of line in my book. I give her a lot of credit for knowing her limitations and sticking to them. It's people like me who try to do more then they're capable of who are really the screwed up ones because we end up frustrated wrecks.
I'm sure sister in law is panicking thinking how her "life will end" now that Mom is sick. Saying everyone should pack up and drop their lives and be there? That's real selfishness in my book.
TiredAZ
I felt bad for going off on you about offering medical advice. I apologize if it was harsh, but after reading some of these other posts - Wow!!! I don't feel so bad.
You can see that your post pushed buttons in a lot of people, including me. Please try to ignore the emotions and listen to people telling you about their experiences. You sound open to doing what is needed when it is needed. I hear you expressing legitimate concern about what the present and the future will be like. I believe you and your fiancee will do what is right, whatever that turns out to be.
BTW, there are as many ways and opinions to caregiver for spouses and parents as there are people on this forum.
And you bring up a good point about financials. I am finally starting to put money away for my future after being irresponsible with money for a long time, and the primary reason I have been able to do this is because of my choice to live abroad where cost of living is much lower. Living in NJ would definitely impede on my ability to save and finances are a big part of why we would not want to settle there. As far as her care, I would be happy to contribute to home care down the line or having a cleaning service come in if they no longer want to do that. His parents are not rich, but between pensions, social security, retirement, etc...they are not in any dire financial circumstances.
Down the line, who knows what will happen. But all I know is, at this time, she is doing well; no one is being forced to quit jobs to provide care; no one is having to provide any sort of ''caregiving'' at this time that is interfering with their own life. Even being there for the last two months, my fiancee made attempts to see his parents more than he ended up, but they did not seem interested in the company; they have always kind of been that way--they like privacy and just the two of them. Like you also mentioned, the lengths that some think adult children are expected to go to for caring for parents is just too much; I see the effects it is having on people here and something needs to be done.
His mother is in the *VERY* early stages, and his sister is *NOT* her caregiver. The sister emails the brother to complain about the brothers lifestyle and "lack of presence" around their mother, but from the sound of it, their mother nor father has a problem with it at this time. If the sister was the caregiver, it might be different. In THAT case, I could 1000% understand her side of things, but she isn't the caregiver, simple as that.
Also, I was under the impression this was a place to come, ask questions, *vent if needed* and basically be welcomed and helped, no matter what the problem with caregiving was.
Perhaps we need to move back to being that, rather than hastily judging a new member on one post asking for advice and help with a situation she is unfamiliar and uncomfortable with.
Just sayin'
No problem..while I was typing one of my responses, I got several more messages that I did not get email notifications so I did not even know they were there. I am sure there is some jealousy on her part about our life..not necessarily the exact way we live it, but the idea of having greater freedom and doing what we love. She really hates her job and she has been in a relationship with the same person for a really long time. I do not know too much about it, but I know it has been tough at time with him having suffered from depression,etc...I know she has had her bouts too. My fiancee is a really positive person who worked really hard to change his life and perspective and in some ways, I think his family thinks he lives in some sort of fantasy land, but the fact is, he just sees things very differently. I cannot even begin to understand how she feels and I do not hold her anger against her. She just sees her mom as someone who is dying in this very moment and thinks he should be there, and seeing his absence as not caring. I know there are such heavy divisions on how adult children are supposed to respond to these issues and to what degree we are supposed to care for them on our own. If I were living in NJ, this would not even be an issue as I would be there for them without question, but my life is not there anymore.
Thank you for your input, but at this time, there is no ''care plan.'' She is living at home with her husband and is doing okay, save for some memory troubles. She is not requiring any sort of care at this moment. We have been as supportive as we can even though we were living far away. We call frequently and I am constantly doing research on diet, supplements and treatments that may help and sending it their way to see if any of it is something they are interested in trying. As time progresses and we are still living away from the area, we will do everything that we can to help from a distance. Or maybe we will even be living there again, who knows? At this point, however, returning to NJ permanently is not something we think we can do.
Perhaps she is just incredibly jealous of you and your lifestyle? You are (obviously) close to her brother, and she may envy that relationship, (either with him if they were never close, or if she is single, envious of a healthy, stable, loving relationship of her own) as well as the freedom/ability to travel the world. Maybe she just feels like she got the short end of the stick and thinks shes "stuck" there with their mother? I'm not saying she IS (since she's not the primary caregiver) but she may be ... well, overreacting a bit? to the diagnosis.
Maybe he could try another route with her, if she seems to be stuck with the whole 'unloading' on him every time she emails. Have him send her a mail telling her that, while he understands her feelings, that it is not really fair to him (or you) for her to only contact him with so much negativity. Tell her that she is welcome to email to chat, or to update him on your mothers health, but that he will no longer read or reply to anything that is just ranting at him/blaming him for not being there 24/7.
Also (and it kills me to say this) it may be that she is simply a drama queen, and is using this as an excuse to project her fear, anger or other emotions onto her brother, and blaming him for having a better life, rather than using those emotions to make a change in her own.
I hope they can get things worked out, for their parents sake. Awkward family times in the middle of this can just be a pain in the rear.
At this point, his sister does not have to provide care in anyway as his mother is not experiencing any severe symptoms. She just obviously has memory issues from time to time, and his father clearly does more for her now, but she is nowhere near needing constant supervision or extensive assistance--obviously I know that will change over time. The main problem with the sister is that she sees her mother as dying in this very moment and thinks my fiancee does not care.She has lived in the same town she grew up in her whole life and is very settled there; I know she has firm beliefs about what my fiancee should be doing, and understandably, she cannot see the perspective of the child who has made a life somewhere else and is no longer right around the corner. As for your thoughts about siblings sharing equal care, if everyone is close by, I think that is very important, unless there is some legitimate circumstance that they cannot.. But, for siblings that no longer live in the area, the idea that everyone should totally drop everything and move to where the parent is, is not something that I think should happen, unless the child really, truly wants to do that. There are many ways to provide assistance--obviously giving direct care is the most desirable since that falling on just one or two people is obviously very hard. If people as adults continue to live in an area that is close to their parents, clearly the pressure is going to be on for them and that sucks big time I am sure.
Clearly, it is a terminal illness but she may live another 10 years, possibly more. If we lived in New Jersey, I would no doubt participate actively in her care and do whatever I could within my own limits. But, that is no longer our home and we do not want to live there for various reasons, particularly that we really cannot afford to. He loves his mother, and so do I, and I think that it is important for children to make sure their parents are taken care of, but the idea that they should totally turn their lives over to the task is not something I agree with. Obviously, the degree of responsibility adult children have to their aging parents is a matter of hot debate. But, the argument that they took care of us as children means we must reciprocate just does not hold water for me as they are two completely different sets of circumstances. Our parents chose to have us and I do not see our birth as some sort of debt that needs to be paid, even to the point of totally uprooting our lives and having their care dictate every aspect of our existence. Checking in on mom and helping her out with stuff--no problem...providing extensive care to a seriously ill adult who is in decline is a whole different thing. Not feeling like you can handle this does not mean to me that you do not love your parent.
I don't know..this is just a very complicated situation for us since we no longer live there and we feel pressure to return. But, this is not just a few months to help recover from a surgery or terminal cancer with three months to live-- in these situations I would not even think twice about staying. This situation would require a complete change that can go on for years and years. A change that would put a huge strain on the relationship I value most in my life. Family is great in so many ways, but for the most part, has also been the biggest source of stress in my life as I am sure many of you can relate. Kudos to all of you doing this job..I cannot imagine how hard it must be for you.
I'm the solo caregiver of both of my disabled parents, while my brother carries on with a far more "normal" life than I could hope to have at any point in the near future. (full time job, hobbies that have him staying off in other states for weekends with his wife, kids and grandkids to play with and enjoy being with.)
It could be that she sees your fiance(e)'s actions as uncaring or unhelpful. I'm not saying that they are, but perhaps it would be better to ask if there is something specific she wants help with, rather than assume it's simply because you do not live there 24/7 with them? While her "going postal" isn't exactly appropriate, it is fairly understandable imo. Would it be possible to set up an actual 'visitation schedule'? Something so that the family knows for sure when you will be back in the states and near enough to visit with her?
She may be jealous of your lifestyles, being able to travel and not being saddled with the ongoing care of their mother. She may feel as though it is being pushed upon her rather than something she is willingly doing.
It also may be that she is frightened, and has no one to turn to for comfort that would understand. You say they were both abused by the parents, and honestly no one in the world could understand that situation better than her own brother, who was there with her.
Maybe having him, and him alone, without any outside interference, sit down and talk with her would help. (this means you and anyone else staying out of the room, and having both of them turn off any tv, cellphone or anything else). It might help her to know, from him, that he does care and that he is aware of what is going on, without having either of them 'acting out' for whoever else may be watching.
You state that both his father and an aunt are nearby in case his mother needs help? Does the sister live with them as well, or does she live across town? If she IS there, alone, with them during most of the day, there may be problems that you don't know about, or that others are taking care not to air in front of you and him.
Their mother may also be part of it. For example, while my brother and his wife actually live here in the same town, and he actually works about 2 miles from our house, it is rare that he actually comes to visit our parents. I've sat with my mom while she's cried over another missed visit or broken promise to 'stop by after work' from her only son, and I've had to be the one to hear her rages over him wanting to borrow money *again* when he can't even be bothered to come check on them more than once every month or two. It kills me, and as a result I've been known to let loose on both him and his wife over it. From my view of things, she may be ok NOW, but visiting her when she's already too far gone will be just about useless. Spending time with her *now*, while she's coherent and aware is better than waiting until she has almost no memory of him to start visiting and helping care for her. Perhaps that is why she is so upset? Maybe their mother cries to her about it, or maybe she yells at her over the fact that her son is so long between visits? Or maybe she doesn't really remember the visits at all, and that in itself can be a major stresser for a sibling or caregiver to deal with. (having to explain that yes, he has been there, and no he's not gone away forever.)
There is a fine line between our perception of a situation, and the reality of it. Maybe she is seeing this from a far different perspective than you or she may be a complete basketcase. Either way, the best thing to do would be to have him at least TRY to talk with her and see what is actually going on.