Different future needs for spouses w/ dementia

StepKlet

Caring for a couple from afar.

Dad: Physically healthier but cognitively at level 5/6-ish. Happy demeanor. Will go along with anything (for good and bad). Decision making is very confusing for him. I am the closest family member at 3 hours away.

Stepmom: Lots of physical ailments but sharper. Maybe stage 3? Paranoia and angry outbursts always existed but are now frequent and pronounced. Verbally abusive to husband and aide. Refuses to be separated from dad, even for a couple hours, because she fears it's part of a conspiracy to take him away. Her family lives right there.

Both still live at home together with aide M-F for 3 hours/day for meals and transportation but I don't know how much longer that will be realistic if she drives the aide away. They live in a very rural area where resources are quite limited.

Dad's family is in one state with lots of nicer residences, stepmom's family in rural area with some depressing options for care. I don't want there to be a tug of war between families and want to make sure I'm taking a big-picture look. Any advice as we consider assisted living?

Sjodry

Stepklet,

I have not been in your same situation, as I am caring for only my mom in memory care. But from my experience and close-up view (I am there with my mom daily), I think choosing a location that has the best reputation for a caring staff (with less turnover) would be preferable. I also think the location which will allow frequent family visits and oversight is preferable (meaning family which lives nearby).

During our 7 months in memory care, my mom has had 4 or 5 falls and/or visits to the ER. Having family nearby who can be on hand for these types of issues, plus being able to visit them is really important. If the more rural area is not going to lend itself to that flexibility, then it should be excluded.

Best of luck to you, I am sure this is difficult for all involved.

Take care.

Sandy

Quilting brings calm

First, figure out who has the POA and medical POA for each of them.  That will give you a little insight on what their feelings were for future care. Did they have the same person or different people? Did they name  each other? If so, she needs to name someone else.  It may be too late for him to name  someone else.  If so, and he named her, she’s  got the final say so until she’s declared incompetent.   

Sit down and talk to her. She  may or may not want to be at the same  place as him if they both need to go. She may or may not want to be around her family with or without him.  At a level 3, she should still be able to express her wishes.  There is also the financial aspect. Can they afford to be in two places? If he goes first, and she  can remain in the home with aides, then she may be ok with him going where his family is. It’s entirely possible that they won’t need the same level of care at the same time.   

Bring them to your area for a day or two( or at least her).  Show her some of the possibilities.  She is probably with it enough to be able to go ‘this one is really nice and has a,b,c while the ones by us don’t.  Pick out places that would appeal to her( have activities that she likes since she’s the one most likely to use them).  

Keep in mind that which family is in the area chosen is going to be taking care of both of them.  An ER visit close to you for her means you will be the one showing up.  

Cynbar

I think you need to evaluate some of the family dynamics here before starting to plan. You say they live near her family --- is this family very involved and supportive of both of them, supportive more of her, or hands off? Are they willing to be the go to, on site support system for both of them as their care needs increase? If you were to talk them into coming to your area, are you willing to be the one mainly in charge of both? There always needs to be someone fairly local (3 hours doesn't really qualify) to be the one talking to doctors, going to the ER if one of them is taken there, researching facilities, overseeing placements and building a relationship with the staff, and so on.It's very difficult to accomplish this long distance. Is this a long marriage or a recent one? Do the two families get along? Are their finances comingled?  some families in this predicament end up splitting up the couple, with each family taking care of their parent. It doesn't sound as if their relationship is going too well if she is verbally abusive towards him ---- maybe they would be better off apart. I don't know them and don't presume to have the answers for these questions, but I think you need to answer them before you proceed to long term planning and looking at facilities.

Also, are you your dad's POA or is it his wife? If it is you, you have the responsibility to make the best decisions for him to ensure his safety, even if his wife doesn't agree. If she is his POA, then of course the decisions are hers.

StepKlet

Many thanks to all of you. I have the POA and aside from a small social security income, my father has had all of the financial responsibility. Understandably, her family is very scared that he'll die first and wants assurance that she will be taken care of. We want the same for her, but it's taken us some time to make sense of all of his assets, and that delay eroded trust with her family. Our verbal promises probably seemed skimpy on their end, as they've been doing all the heavy lifting with day-to-day concerns.