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.
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."
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.
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.
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.
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.