My husband and I have family members we are responsible for. The husband has dementia, and the wife has been declining in health while caring for him for years.
We're trying really hard to get them to open up and try professional helpers. The husband is afraid of outsiders taking him away, and the wife keeps saying they don't need it. They do! She's aged about 20 years in the past two years, and we are very scared for them.
While she is starting to talk more about his condition she seems to be having a lot of trouble gripping with the reality of it. She does everything he asks of her—even when it is expensive or dangerous. When we talk alone with her she breaks down a lot.
We had been visiting them every other week, but cannot see them right now because of quarantining (our kids are just out of school the next few weeks).
I am afraid between the potential of illness—along with a potential injury (there have been a couple with the wife already) causing a big emergency. She'll most likely get really hurt/sick to the point she's incapacitated...or we will lose her.
We tried having gentle-but-assertive conversations with them about their needs and the future, but plans/changes are moving forward very slowly. She'll let us take her to places and meet people, but takes no initiative to reach out to them on her own.
The husband needs 24 hour care. If she was hurt/injured/dead, letting the husband move in with us (what she seems to expect we'll do) cannot happen. He can be very aggressive at times (which I know now is the condition—not him) and he is BIG. We could easily get hurt and have little ones we still care for.
That aside, we are not in a position to be able to caretake. We both have to work and we are raising young kids. We live out of state, and we are the closest family
As the quarantines came about, I came to realize I want us to prepare for the worst. Even if our family doesn't get the Coronavirus, I believe the wife will probably be hospitalized very soon as I have seen this before with friends' families and neighbors.
What can we do on our own to prepare if one of them gets sick/hurt/passes away and we need to place the other somewhere safe?
We want to be compassionate, but we need to protect ourselves. Not having a plan could really hurt our own health, marriage, and careers—and then we will be useless as caretakers.
We already have the info for their local department of aging and some resources about homes/hospitals in the area, but we feel overwhelmed by the information. Would love other ideas, and a solid way to come up with a plan. Would it be smart to touch base with a local attorney or some other mediating professional?
Thank you so much!
Neither of my aunts were able to "cross" their husbands and both predeceased their demented spouses. They were convinced only they could caregive. They were both very wrong.
Please press your aunt to get her husband the help he needs. She is smart enough to see that this is no longer her loving spouse. It's a diseased brain, one that isn't doing anyone any good.
But then I learned more about dementia and saw how many aspects of his behavior totally made sense. Parts of his brain has holes (okay, plaque...but his brain is still dying either way).
Right now, he makes me think of how intense little preschoolers with a learning disorders behave. I've known several small kids like that. No matter how much they push my buttons, I can't help but feel compassion for them. Those little guys and gals needed direction, redirection, and compassion—not hate and punishment. The last two help nobody.
And it feels like he is regressing to be a scared, hurting, angry child—not nearly as small or cute, but 100% as human. It's not his fault...but I worry as he is so volatile and loud. I worry so much about his wife, and I am not sure if he can easily receive good care—even if we put in a heroic effort to seek it out and make sure it's financed.
Despite his condition, he can be very sharp and say things that get well under a person's skin. He has become quite sexist and racist, and seems to get a strange charge from making people argue with him. Then he seems confused why people get angry and offended. I have learned how to redirect into more pleasant topics when he is verbally abusive, but I am not sure we can do that long-term. And no one else in this family, but me seems to have figured it out yet.
I worry so much for her, too. Currently, her life is in even more danger, but I don't want to take her choice away. We keep offering help and giving her resources to empower herself. She has to choose to take it, and I think she is starting to realize that—but right now is scary because we may be very limited when it comes to resources and time due to this f*ing virus.
I guess I am asking for helpful ideas, but I am also venting and looking for people to listen, too. I hope that is okay...
I have been trying so hard to stay positive and compartmentalize my feelings for my family, but this situation feels like a chaotic black hole. I know we will work past it, but...damn, it's frustrating.
Dementia is not just about memory. It affects the ability to plan and to consequences of one's actions. It can also entail the inability to see ones own deficits, called anosgnosia.
Wife needs to understand that he can no longer drive the bus, so to speak. If she is afraid of his anger he needs to be gotten to a psych doc or psych facility where meds can be trialed so that his behavior is nonthreatening.
Guilt and fear can not be the drivers of the care plan (I stole
that from another poster here).
He has not. From what the wife told me his doctor had been blowing off diagnosing him forever. We got involved and tried calling the office. All the sudden, the doctor decided to take it seriously. He went to a neurologist. They diagnosed him with memory loss, but not a specific type yet.
From what we've seen, he is not violent—just extraordinarily loud and mean. It can come on at certain times—like if he is overstimulated or super tired.
They have a very large age gap about (nearly 20 years), and this I believe contributed to part of the dynamics—though I know plenty of younger spouses (present party included) who can tell their older partners to "stick it" if they are being unreasonable.
I really appreciate your help. I am very concerned for them.
The husband has dementia. The wife has been caring for him 'for years.' The husband rejects outsiders because he is afraid they have come to take him away (and the wife complies). The husband's aggressive behaviour has driven away friends and family (she complies, and tries to shield him). The husband pressures his wife not to seek out support networks (she complies). The husband makes continual practical demands on his wife, who is ill and exhausted, even though he is physically capable of carrying out many of these tasks (she complies).
How much of this is dementia, and how much is the husband's having always been a piece of work?
After 'years' of dementia, although a person's behaviour obviously very much influences the situation, a person would not be capable of sustaining that kind of intentional coercive control. What is the wife most afraid of, do you think? Are you able to talk to her on her own about how she has to take ownership of their joint situation?
I feel bad for a person (the wife) who allows herself to be abused this way. Has this always been the dynamic in this marriage? She very clearly needs mental health services right away to come to grips with the reality that she is burning out, in addition to being terrified that he will hurt her if she denies him something.
Report them to Adult Protective Services as vulnerable adults asap. You are in no position right now to help if one of them has an emergency.
Husband likely needs meds to help with the aggression. Do you know who is following him medically and if wife has divulged the aggression? You can contact their doctor in writing and talk about what you are seeing.
Would she call 911 if he became out of control? Getting him hospitalized might be the best route to getting him placed.
The conversation that needs to be had is on the lines of "Auntie, you and Uncle are in a living situation that is becoming unsafe for you both. We love you, but it is not possible, now or in the future, for you to live with us. A plan needs to be made; we can help with the planning or we can ask the county social workers to come talk to you about that. Which would you prefer?"
You make it what's called a "forced choice"--- A or B. Nothing else in on offer.
If she gets defensive, then she's made choice and the County or State will need to step in.
I see a lot of elders slowly killing their loved ones to keep up a "charade of independence". You need to stand up for yourselves, your marriage and your children and say "no, I can't possibly do that".
Remember, this situation is NOT of your making. This dreadful disease is the culprit, not you and not your loved ones. Dementia is a game changer and if Aunt doesnt see or acknowledge that, consider that there may be some cognitive challenges that she is experiencing as well.
You can present the wife with the outcomes of every decision:
- you cannot continue as PoA because it is more than you can handle, especially if they aren't willing to meet you half-way with solutions, like moving to AL close to where you live. There is much irrational fear about NHs because the ones of her youth were indeed bad.
- if you resign as PoA the county will need to take over and she will have even less control over what happens.
So, it's the least distasteful of 2 distasteful pathways. She can make a decision and you can choose to live with it. She cannot have it both ways and you cannot continue to lead her to believe it is possible. For some dilemmas there are just no perfect, or even good, solutions. You need to choose one and have peace in your heart that it's the best that could be brought about.
Unfortunately our circumstances are different as her parents were both close by, mentally healthy, and had a strong community to look out for them (church and neighbors). She and her husband were retirees and empty nesters when she cared for her folks. We work, have kids and live hours away. Neither my husband or myself want the husband to live with us or for either of us to quit our jobs and move up to care for him. We can't. I haven't figured out how to explain this well to her all this without making her feel awful and defensive.
To make it more difficult, her husband's aggressive behavior has driven away all her friends and our local family, and she has distanced herself further from them out of shame as she tries to hide his condition. She is very much alone which makes me more worried for her.
We have been looking for aging/dementia resources for them locally. The wife seems to be interested in some of it, but the husband pressures her not to get involved with any of it. He makes her take care of him (feed him/get him water) even days after she's had surgeries or while she's super sick—even though he is very able-bodied. This used to make us very angry, but we are coming to understand this is part of his condition that makes him behave so childlike.