Fiancee's mother diagnosed with Alzheimer's....Stressing Out!

Follow
Share

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.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
37

Comments

Show:
1 2 3 4
Professional caregivering is calling.Most of us did not hear that call, it wasn't a job we wanted, anticipated or relish.We do it because we have too.The reasons are many but usually it hinges on money or lack thereof to place our loved one in a comfortable Nursing home.
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.
(0)
Report

You don't say?
(0)
Report

anon7869, just so you know ... this thread is over a year old.
(0)
Report

Btw, FIL and SIL are right to dismiss supplements because they are often improperly studied or advertised. Coconut oil, for example, is worse than butter in the amount of saturated fat, which has been properly and extensively established to have a link to AD. So try to be open to the possibility that what you find might not be the best thing and since they are living and breathing this, they might know better and even resent this low-effort advice you are giving them. Rather than doing that, spend time with her or looking up things they actually need, like a new doctor or specialist - you'd be surprised how much time something like that takes.
(0)
Report

All of the things you worry about taking on by moving closer to your MIL are the exact same reasons why you should help out more, because SIL is experiencing those things several fold. The way you have described things demonstrated that you likely know nothing about the real struggles she and FIL are going through. You worry about living an international life and the SIL and FIL can't see beyond having enough energy to adequately and consistently take care of MIL to even enjoying simple pleasures or fulfillments. Caring for a parent with dementia involves a kind of emotional exhaustion every day that you just cannot get used to, and because the other parent is so heartbroken and stressed out as it is, a child who is a caregiver really needs her siblings to talk through stuff and share in the feelings. It is selfish for you to turn a blind eye to the burden you are placing on SIL by not helping in MIL's care. Regardless of how you feel about kids and their obligations to parents, you have to understand that by doing nothing you are causing the other family members to suffer. You may think your fiance is just above your SIL and a better and more hard working person but dating someone really skews your image of them and siblings have a much better picture of what's going on. Your SIL may be living nearby bc she has been obligated to do that maybe because of being the girl, and your fiance is happier because he is free from responsibility he may not even be able to fathom. It is ridiculous to postpone seeing MIL on the grounds that she won't die for a while yet. Beyond the fact that this is the best time when you can make memories with her, get to know her, bring her comfort and be gifted with valuable advice, this attitude of yours shows an appalling coldness towards a person, never mind a key family member. You don't have to change your lifestyle completely, just recognize that as in travel, unexpected challenges arise that you need to deal with and that can be very rewarding and bittersweet, and make more of an effort to be present and help out. Schedule time to visit her and take over from FIL and SIL - this predictability will calm everyone and give them a sense of reprieve to look forward to. Send them money to help out with costs as everyone should be contributing - FIL and SIL shouldn't be having their lives compromised by your lack of support and she did invest in her son and your future husband after all. You won't regret it but if you are honest with yourself, rather than just being defensive in clinging to this specific lifestyle you want, you will regret not doing more than you are.
(0)
Report

You wrote, early on in all this, "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..." I suspect that is what got people in an uproar, just because lots of people have someone who is not "there" and seeing the situation but just offers advice from afar that adds to rather than actually helps with the real, both practical and emotional, burdens they are bearing.

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.
(5)
Report

Scorpio... Your MIL is in EARLY stages of Alzheimer's. If she has her health otherwise... she could live for YEARS!!! My mom did. When mother was diagnosed in 1993 of Alzheimer's I was there. The first words out of the social worker's mouth were, "So, have you thought about which nursing home you would like your mother in?" I WAS LIVID!!! I told them my mother would NEVER go into a NH. She then looked down her nose at me and said, "I don't think you know what you're getting into." Having gone through 20+ years of my mother behaving oddly already, and my grandmother died from Alzheimer's... I was pretty arrogant in my assumption that I knew EXACTLY what I was getting into. :) I was wrong... :) NOTHING can prepare you for the actual day to day emotional beating you will receive if you give up your life to sit with her.

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!
(3)
Report

Hi everyone
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.
(2)
Report

As someone who 13 years ago moved from a very happy existence to Arizona to care for elderly parents (and someone with a disinherited brother who we didn't see in nine years until my Mom died this year) I feel very qualified to comment on this subject.

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
(2)
Report

Scorpio -
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.
(2)
Report

1 2 3 4
This discussion has been closed for comment. Start a New Discussion.
Related
Questions