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

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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.

37 Comments

A few observations/thoughts:

1) You are right. Returning to settle near your fiancee's parents would be totally life-changing. Many children do similar things for their parents. As you browse on this site you will find many who have done it and deeply regret it, and others who would make the same choice in a heartbeat. What others do is not really relevant to you decision.
2) In deciding not to have children you have already recognized something in your own nature. You would probably not make the best hands-on caregivers.
3) Alzheimer's is a fatal condition, but your Mother-in-Law (may I call her that?) is not actively dying at this time. Perhaps ten or fifteen or twenty years from now when she is on hospice and actively dying the two of you would like to be nearby to be supportive of the rest of the family.
4) The postal sister is having great difficulty with MIL's diagnosis. Understandable. It is unfortunate she is taking it out on her brother. MIL would have developed dementia no matter where her children were living. Even if Brother moved into their house she would still have dementia. This is Not His Fault. Him coming home immediately would not have changed anything. It is very common to react to a diagnosis like this with anger. But for Sister to direct her anger at Brother is irrational. I hope the two of you can take it in stride and not let it become a decisive issue in the family.
5) What kind of help, exactly, is needed for MIL in the mild stage of the disease? Is FIL retired and available to take her to appointments? Or does the nearby sister take care of her appointments? Is MIL no longer able to do housework, or to cook? Who is picking up that slack? I think it would be good to know exactly what kind of extra help is needed and how it is being provided. And, of course, this will increase over time. Once you know that you will be in a better position to determine how you can help from abroad.
6) What is the financial situation? Has someone had to give up a paying job to be with MIL? Can Dad afford to hire a cleaning service, and whatever in-home help is needed?
7) When you know, and keep up with, the nature and cost of the help needed, then figure out how you can contribute most with the least impact on your lifestyle. Maybe it is financial help -- for example paying for a cleaning service so it doesn't fall by default on Nearby Sister. Maybe it is sending cash for gas money to whoever does the driving to appointments. Maybe it is periodic visits and providing respite to FIL. Helping means supporting those who are doing the hands-on work, too.
8) Stay in touch. Use email and skype and cell phones. Write cheery notes to MIL -- and actually put a stamp on them and mail them. Snail mail often brings a smile to us old folks.

This diagnosis is bound to impact your lifestyle some. It will require some of your attention and time and maybe some of your income to be supportive of the folks back home. I think with careful planning you two can minimize the impact but still make a real contribution.

Thank you so much for your detailed response. It really made me feel a lot better; while not everyone may agree with my feelings, it is good to know that there are people who understand my point of view. Reading some of the posts on this forum have made me see that many of my feelings are not to be ignored because other people have seemed to experience what I expect I would so I know it is possible. Perhaps the reality would be different, but I doubt it.

You are right about knowing my nature—I am a very self-reflective, introspective type person. I am a warm, loving, kind person but I do not know if would have it in me to take on an extensive caregiving role. Like you mentioned, when she reached a point where she was truly dying, we would of course be there right away. Also, since our schedules are flexible, we do plan on visiting and seeing everyone every so often. For example, we only went away for two months this time to Costa Rica, which is not that far away. Then we want to come back and stay for a month or so to spend time with everyone.
As for his sister, I know that this must be very hard for her; she also has a host of personal problems and I know she is just generally unhappy and perhaps a bit depressed. His parents are kind, nice people but used to have serious drinking problems. My fiancée and his sisters experienced beatings on several occasions and have many scars from that; my fiancée worked very hard to transcend his past and his sister holds onto a lot of stuff. I think that there is a part of her that is jealous that my fiancée found a way to be happy despite their childhood. He loves her and has reached out to her, but she just cannot see his perspective. As I mentioned in my original post, she sees her mother as dying in this moment, and sees Ryan as being dismissive and not caring.
At this stage, she really does not require any extensive care; she is doing a clinical trial and goes to a clinic for that every two weeks I believe, but she does not have to visit a doctor regularly for anything. She is not experiencing any sort of physical health problems. She has memory issues, but nothing severe where she is unaware of surroundings or anything like that. My fiancée was there the other day and they were watching the Big Bang Theory together and she was getting all the jokes! She is able to shower and take care of herself, but FIL does do most of the cooking. She still gardens and walks her dog several times a day. MY future FIL has been retired for several years and is available at all times to her. At this point, he does not need any assistance in caring for her. His job asked him to retire early and he was given a very nice bonus for that; they are not rich, but between savings, social security, pension,etc…there are no financial issues. If necessary, they would be able to afford in-home care, cleaning services,etc… If he thought he could not keep up with the house anymore, we would be happy to help pay for a service or other types of costs that may be required to help ease some of the strain.
We are very good about staying in touch and Ryan frequently skypes with his parents when we are away. In the couple of months that we were home, he tried to get together with them more frequently, but they have always liked their privacy and were never big on frequent visits, so most times, he was told that they would do it another time.
I know as time goes on, more info will emerge on how we would be able to help and I do want to do everything that I can, but at this point in time, I do not think moving back there is the answer. Thank you again so much for your response.
One thing you will see a lot on this forum is resentment against non-caregiving relatives trying to tell the caregivers how to do their job!

I don't think you are evil, or any more selfish than I am. I understand that you are trying to be helpful. Certainly keeping MIL well-nourished and fit will improve her quality of life at every stage of disease.

My personal reaction when someone tells me that low thyroid can mimic dementia is to think, "Do you think I'm stupid and incompetent? Don't you think I would have already checked that out?" People on this site recommend cocoanut oil or something. I think, "Feel free to come to my house and give him the pills every day. If it really worked, it would be recommended by his doctor." As you can see, I'm a touchy crab-apple who hates being told what to do. Your future SIL is probably just like me. Understanding that you mean well wouldn't prevent my knee-jerk reaction, and I claim to be a Buddhist!

Being helpful, in my opinion, would be to send cards and flowers, to call often and listen sympathetically, to send money, to handle paperwork, to volunteer to MIL-sit for a week or a weekend. Sure, you don't want to have kids or caregive, but to suck it up for a short period would be a growth experience for you. To make sure you both spend regular quality time with MIL while she's alert enough to enjoy it is the kind of thing that I think kids DO owe their parents. If you and fiance do get married, it will be for better or for worse. To encourage or support or allow him to truly support his family through this seems like a rehearsal for the future and a way to build good Karma.

Think about how much you can actually stand to do, and then do a little bit more. You'll be proud of yourself in years to come.
Scorpiogirl1102, first let me say I am in a similar lifestyle and situation. You see I work from anywhere, my husband and I do a lot of traveling.

You see my mother has Alzheimer's and we are past the early stages. So my advice is going to be far different than the rest of those on this panel.

If I were in your shoes, take his mom on a trip with you. If she is in the early stages, then she can travel and enjoy things. Plus it will give your fiance's sister a break.

Do not just call and send cards like others say because if I get them I would throw in the trash and be angry. I travel with my mother and it actually helps out with the Alzheimer's and engages her brain.

No one says you have to give up your lifestyle, but you can give his sister a break by taking his mom on a trip. Talk with his sister and figure out a way to share the duties. Perhaps giving her a couple of trips each year will give her something to look forward to.

I travel with my mom in a 5th wheel and I take her on a cruise to foreign ports every year. I take my mom with me almost everywhere. I have 3 sisters that do very little and leave the burden of caregiving to me. So I understand both sides of your equations, if you continue to live your life and do nothing to take the burden off your fiance's sister, she is going to become angry and has every right to.

You have a right to live your life, but so does his sister. That is why I say share in the duties. She is in the mild stages, I am in stage 4 with my mom and we still travel.

You can make it work if you are willing to negotiate and work together as a team.

I am sorry for those that disagree, but I believe that siblings should share and be equal in the care of their aging parents. Living it to one sibling is wrong and putting them in a NH for no one to visit is also wrong.

So work together and take your fiance mother on a trip one or twice a year it will be good for all of you.

I am living all sides of your situation. My mother has a broken leg that isn't going to heal so cannot walk, she is in stage 4 Alzheimer's and losing ground every day, I can work from anywhere and do a lot of traveling, but I am also angry and bitter towards my siblings for their crap. Flowers, cards and money cannot make up for their behavior over the past 2 years.

Sorry, but this is how I feel and I am living it right now.
Seems like the family has the resources to deal with this without disrupting your lifestyle. But for some reason everyone is allowing things to be thrown off center by the guilt-tripping sister. I wonder if it might helpt to have family counseling with an experienced and skilled therapist to intervene with an objective prespective?
Listen to jeannegibbs she gives really good advice! It sounds like the family is still reacting to the diagnosis and thinks everything is going to change in the next week. While I have observed ALZ early progresses more quickly, we still are talking years. I think your lifestyle will have to be adjusted as her condition worsens but Sis wants everything to change now. She is angry and taking out on someone she see that doesn't have to think or deal with everyday because her brother lives out of the area. Don't change your whole way of life. See where you might help-money and time-then do it. As I have state before: You can be responsible without having to give up everything and do hands on caregiving.
I need to say this again, as one that in a similar situation as Scorpiogirl1102, the sister has a right to be angry.

If you have not been a 24/7 caregiver then you have no idea what it is means to deal with the changes and moods of Alzheimer's. I have been with my mom through the early stages because she cannot walk and the changes take a toll.

The sister is watching her mother change and she is doing it alone. Money, cards, flowers and not being hands on does nothing to help the individual that is hands on 24 hours a day.

I am on 24 hours a day, 7 days a week with no breaks. I have one sister that will attempt to care for my mom, but she is easily grossed out so I can't be gone for more than several hours. My other 2 sisters do not lift a finger. What little money or things they buy mom does little in regards to her care.

From a Pyschology point of view, of which I can speak on, leaving the 24/7 care to one individual is poor behavior and selfish.

The key is to negotiate and everyone share in the duties and that means right now. The time to spend with your loved one is now and not after they have no idea who you are or after they gone. If you do not spend time with them while they are alive, then you will have plenty of guilt after they are gone.

I travel with my mother and deal with her mobility issues on top of it, but let me tell you what. I have memories with my mom that my sisters will not have. I have been to about 10 or 12 countries and 30 states with my mom. I have made memories that no one can take from my mom or me.

So Scorpiogirl1102, as I said before you don't have to give up your life, but make some precious memories and take her on a trip with you. Do what is right and make some precious memories. Memories are priceless!

And for the record, yes I am angry at my sisters and those who have no idea what all goes into being a caregiver 24/7. If you have not been with your parent caring for them 24/7, then you do know what goes into. I am watching my mother change in front of my eyes daily. She can be different people throughout the day. My siblings don't see the changes because they are in denial and not her daily. They can't even call weekly.

So I am sorry if I sound harsh, but I am a 24/7 caregiver, I travel domestically and internationally with my mother, and I worked 4 part-time jobs. Also while working on my doctoral degree in Psychology. So we have a busy life, but when my mom's time is up, I will know that I did my best, I gave it my all and I will have memories that will last me a lifetime and that is something no one can take from me. I also won't have guilt over what I did or didn't do. I will be able to look myself in the mirror and say, "I did my best and I honored my father and mother."

I think you are irresponsible and selfish. If you had kept a constant and open line of communication with your SIL, I doubt you would have had that initial unload. If you are going to dump all your MILs care onto the rest of the family, then you need to reimburse the primary caregivers at their highest rate for whatever time they are losing off the job or expenses incurred. Yes, I think I am hearing the voice of the absent non-caregiving relatives that so many heartbroken caregivers on this forum talk about. God forbid you should have to give up your globetrotting lifestyle to take care of an elderly relative. Do you think this world doesn't come around full cycle?
Speaking from the side of the sister here.
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.
Um, folks, SIL is not the caregiver, full-time or otherwise. MIL is living at home with her husband and they are getting along fine. She does not need 24/7 care at this point. (Someday she may.) Even when the son and OP are in the area, Dad does not want a lot of visits at this point. Dumping a lot of guilt and anger on the OP seems mean-spirited and inappropriate here.

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