As per usual, **Shirley Ujest ** is right on the money. We’re going through this very scenario right now with my SIL. She had a very distant relationship with her children, and now that she’s on the downward spiral, the son (who is out of state) is all, “I’m taking care of everything” (guilt and duty) while actually being two steps behind on what needs to be done. The other son is virtually out of the picture. We’re all right here, calling, visiting, talking with the doctors, wanting to make decisions and sitting on our hands because we have no say. The hard decision time is upon us and we get no information, no quick response…nothing. You don’t want to be in that situation. Take control while you can and make the best decisions you know how to make. I guarantee the other sisters will go along with whatever you want to do because they’ll be happy to be out of the decision loop.
Thank you! I am getting some really good advice, and it is surely needed and appreciated. It helps more than you know in our planning and dealing with this situation.
What Shirley said.
Thankfully I don’t have the sibling angle to worry about. I guess that’s one of the biggest advantages of being the only child. The downside, of course, is that I have to make all the decisions [sub]and I feel like a little kid because what do I know about all this stuff? I want my Mommy!!![/sub]
Live, your wife sounds very much like one of my coworkers. She’s the ultra-responsible middle of 5 who always gets shat upon by her siblings because of her generous heart. Her mother recently had a stroke. She’s taking care of her because none of her siblings (all of whom live within a hour’s drive) will lift a finger. I feel so bady for her I wish I had a flame thrower grr.
Have you called the COA or the Elder Service agency yet?
Here’s the link to Medicare and all it’s associated red tape. It would be a good idea to familiarize yourself with it so when it’s time to make the decisions, you’ll at least have an idea of what you’re facing, what you’ll need to provide, etc.
You’ll soon feel as though you plunged red-hot pokers into your eyes. But this is how the game is played. Best of luck to you.
In my early 20’s my Mother was dying of cancer, a while later Dad died of a heart attack. My brother lived out of state and it took years before I got rid of my anger at him for not doing more.
In his defence 20 years later after talking things through in bits and pieces I don’t think he ever realized how bad it was for me being there for every minute.
It sucks on both sides but having been where your wife is I know how hard it is. She needs to tell her sisters what is going on. Every sorded detail, give them the benefit of a doubt. If they continue on as is, then the hell with them.
Some communities have excellent programs to help deal with elderly parents and their caregivers. This includes “adult daycare” type programs where the social service agency will come collect the parent, take them to their facility for the day (giving the caregiver a much needed break) and then transport them back home. They also provide support groups for caregivers, etc. Look in the front of your white pages in the community section to see if anything is offered in your area.
Good luck.
LiveOnAPlane, just a story from my recent experiences in this.
My mom has always been fiercely independent, despite spinal cord injuries that caused hemiplegia. She insisted on remaining in her own (completely inappropriate, inaccessible) home, doing things her own way, none of her kids’ business by damn.
The last decade, she kept getting stranger and stranger and really paranoid (e.g., believed every conspiracy theory propounded on AM radio, kept all of her junk mail so no one could get her address, etc.). She was bitchy and mean to everyone, not just her kids, including people who were doing her favors. She threw fits any time any sort of living change was mentioned - “you just want to pack me off to a nursing home to die!” kinda crap.
Things came to a head a couple of years ago, due to her own foolishness, and she ended up in hospital. I talked to the attending (since she didn’t have a dr in town) and got him to say she couldn’t go home due to after care needs. VERY long story short, she’s been in an assisted living center since. Once we got her into a good one, got her a good doctor, etc., and she had some time to adjust to the new situation (and get her meds straightened out), the improvement has been near miraculous. She knows what’s going on, she’s cheerful and pleasant - I actually enjoy visiting now (in small doses ;)).
As I’ve tried to get her stuff settled, I’ve realized that she hadn’t dealt with any of her personal business in several years. I think she just got overwhelmed - she had a house that she couldn’t keep up or get around in, but that she couldn’t make the decision to leave (it was the house she & my dad bought and worked on together). I think she got so depressed she just quit functioning (with the help of some serious quantities of medications), which only made her more depressed, etc.
So what I’m trying to say is that there is some hope that, if MIL is just feeling completely overwhelmed and helpless in her situation, then fixing her situation (by getting FIL into appropriate care) may improve her condition tremendously. It may be something that MIL can’t make the decision to do herself - she needs someone else to do it for her. (Just like my FIL could not, COULD NOT, tell the doctors to take his wife off of life support, even though he knew that’s what she wanted. Someone else had to do it for him (no objections from him) - he just could not say the words himself.)
FWIW, I was the evil child, too (although not as bad as your wife’s situation). Since I’m the one in town, I handle everything. Now that Mom’s turned back into a reasonable person, I can do no wrong. She’s very appreciative of what I’m doing and tells me to do whatever I think best. (That’s scary and makes me want my mommy, but aside from that…) We’ve gotten along better the past year than in my entire life. My only regret is that we didn’t realize sooner what was happening, instead of waiting until it was a giant nightmare mess. In my conversations with various people about doing the parent-growing-old thing, that’s the most common sentiment - that they waited too long to get help, or make the hard decisions, and wish they’d done something sooner.
Redtail23, I am greatly encouraged and happy for your experience in the situation turning around. Just goes to show there’s always hope.
Amazed as always at the continued outpouring of help, sites/links, stories & advice.
Folks, this really helps. You all da best!
(P.S. I just got back into Pittsburgh a couple of hours ago on a “Red Tail” [Northwest Airlines]) 
Glad to hear it helped a little. A few more thoughts, based on my experience. IANAnAnything, so remember that free advice is worth exactly what it cost ya.
(As far as the family and denial - BTDT too, although on my sweetie’s side*. Lemme know if hearing the gruesome details would help.)
Talk to the elder care services people and find out what’s available and/or suggested. If possible, get a complete assessment done on both of 'em. For example, there’s a geriatrics center here that does a multi-disciplinary assessment with geriatrics-specialist physician, social worker, pharmacist, other specialists as needed, etc., and will make recommendations for living placement/level of care (if needed), in home assistance, etc. They will also have experience with resistant parents, siblings, etc. - this isn’t that uncommon. If something like that is available, spend the money on it. They can help you deal with the parents.
Definitely keep the parents involved with this as much as possible - it will be easier if they’re a part of the decision-making process, especially in a situation where an impartial third-party in authority (i.e., doctor) will back you up. (May not be possible with Dad, but hopefully the docs can talk to Mom.) Lay out the possible options and help her choose. Refuse to discuss the impossible options that she wants to pretend still exist. “Mom, that’s not possible any longer. These are the choices you have:… Which of those do you think is best?” Repeat ad nauseum.
Definitely talk to a lawyer ASAP to figure out the best way to handle asset management.
When you’ve got a plan of action, inform the sisters. If they don’t like it, the response is “Then you can come here and deal with it. If you want me to handle it all, I’ll do it my way. If you don’t like my way, then you can take over and do it all yourself. If you don’t back me up with Mom, then I quit and you can do it.” Don’t argue with them, especially regarding methods/choices, give them an ultimatum and stick to it. You win either way - either you get to arrange a workable situation, or you don’t have to deal with it any longer. The key is that you have to mean it and be ready to do it, otherwise you’re just posturing and they’ll turn it against you. I wouldn’t count on them for anything, however - even if you got them to agree to “help”, I’d bet it’ll be more hassle than it’s worth trying to make them do whatever they’d agreed to do.
Many times, both IME and as it was explained to me by various professionals, the key to dealing with parents is often just being confident (in appearance if not in fact ;)) and firm. It’s easy to feel that you have to do what your parents tell you; it’s been that way for most of your life and it’s what they’re expecting too. However, in this situation, those roles are reversed - neither generation deals with it very well. It’s scary and difficult, especially at first. Unfortunately, many elders do not want to face the fact that they’re no longer as capable as they might want. But once something is put to them as “this is what is going to happen, end of discussion”, then they deal with it. If you wishy-wash around and try to sugar-coat it, it just gives them room to play the denial game and manipulate you and the situation. (My sib and I spent years in this mode, it’s no fun.) Like I said, eldercare workers and/or doctors should be able to help you with this (never hurts to have “authority” backing you up). Don’t let 'em play the “you’re just mean, if you really loved me…” bullshit, either. Best answer I heard…“Mom, if I didn’t care about you, I wouldn’t be putting in all this work - I’d just walk out and let you die.” I know I had to threaten Mom at least once with walking out and leaving her on her own, just to get her to listen. And I meant it, too; it only works if you mean it and will stick to it.
Be supportive of your wife. Trust me, as difficult as it is for you, it’s worse for her. She might consider therapy, just to have someone else to talk to/dump on, if nothing else. (After a while, you start feeling really shitty about constantly dumping on your family. And the frustration and constant negativity can cause problems in the relationship between y’all. If she can have someone else to vent to, especially a professional who can help her sort out her feelings and options, then it leaves you free to be supportive in a positive way because you’re not dealing with so much of the bad stuff.) It sounds like she may still have issues she needs to deal with in regards to her family - IME, at some point, you just have to accept that they are who they are and decide how you’re going to deal with them. Which often means being able to truly say/feel “fuck 'em if they don’t like it”. If she hasn’t done that yet, a therapist may be able to help.
And I third or fourth or whatever - moving your wife away is probably not a good answer. As fun as it sounds to get even with the siblings (and I’ve had the same dreams, trust me), it probably wouldn’t be worth the guilt she’d feel when something bad happened. (And it would - even if it wasn’t really that bad, be sure that parents and siblings would blow it up to immense proportions just to guilt her with.)
It ain’t easy, and I’m certainly no role model - I’d hate to show you my list of things that I’ve been supposed to do for a year or more now - but it’s also fairly common and there is support out there. I’ve been amazed at how many sympathetic people I’ve had help me with various pieces because they’ve been through the same thing themselves.
*(I’m fortunate that one sister lives out of state and is more than willing to agree with whatever I do, as long as I’m taking care of things. Although I’d rather have her here helping, at least she’s supportive of what I decide and backs me up with Mom. Haven’t seen other siblings/in-laws in many years, so my only concern is making sure that I get all the paperwork right for when they crawl out of the woodwork at the funeral.)
I very much understand this type of situation and it’s so unfair.
I must bring this to your attention, because I think it’s important information.
Macular degeneration causes victims to see lights, people and monsters that are not there. Victims of Macular Degeneration are often thought delusional and crazy. I hope you will put her mother on the path of a possible solution. Once patients know what’s going on they can rationalize away the existence of what they see, verses what’s there.
Charles Bonnet syndrome is what the delusions are.
This page gives other causes of Charles Bonnet syndrome , but they all have to do with sight deterioration.
http://www.nationalreviewofmedicine.com/issue/2004/11_30/feature08_22.html?:
A second site.
Thanks for that link about charles bonnet syndrome. My mom was recently diagnosed with Macular Degeneration and taking it like a bowl full of jello ( There’s nothing I can do. It’s what happens to old people…)
The responsible child in my particular situation is…me. And yes, mom and I have a list of eldercare attorneys and need to phone one. My dad has had some health issues recently, exacerbated by ALZ. At this point, he’s rallied enough physically that he can remain at home, and we can get him to adult day care after he’s recovered from a minor procedure, upcoming. I do much of the caregiving because my mom is 80 and because I’m able to. My brother has not done squat yet, but that’s most likely because he is clueless as to how much attention dad needs sometimes. I know, I know…I have to make him realize that he should at least chip in financially when we hire caregivers for respite, since he doesn’t live nearby.
The bitch of it is…the folks tried three times to buy long term care insurance but wound up having to quit, because the premiums would have wiped them out financially even before they’d finished paying them. So the money matters are a real headache. It blows to be in the middle class, I tell ya.
I feel for the OP and all those in similar situations.