Siblings lack of understanding

Hello DonnaPJ. Lack of understanding seems shockingly common. Even with educated, informed and engaging people it seems they do not grasp the dynamics the person is dealing with, nor do they have awareness of what it is like for the loving spouse whose life has become drastically changed forever.

In my family, we have someone who owned a home care franchise for 20 years. They staffed nurses and aides to support those living at home with dementia and STILL they did not see what was happening under their nose to their own parents. I cannot explain it. It was exasperating. No matter what I said, they just shrugged and it never 'sank in'.

You could send links to articles or websites, you can explain until you are blue in the face, but you cannot get them to understand it. I think it is something people innately just 'get', or they don't.

I personally found it appalling, shocking and hugely disappointing. Also, I had a sense of being so very alone.

It seems you are on good path supporting your DH and taking steps to safeguard him from others who do not understand or could take advantage if they see a vulnerability. You did a good thing to make the larger family aware. Now, it is on them what they do with that. Trying to get them to "get it" will likely only take away your energy and time that is best spent instead on you and your DH. I would say instead to focus your efforts on yourself and your DH. Yes, absolutely, keep doing your Dobermann-style watch over DH. Hiding the checkbook, credit cards and monitoring phone conversations are all good steps. Eventually, changing passwords of online financial accounts can also be a good step.

I hope you find support here, and benefit from visiting as often as you like.

A sister asking for money? My God. I thought I had a rough in-law family to deal with. Fortunately for me, in some ways, I had to learn to accept them for who they are earlier in our life together and it's been helpful.

My DW is the oldest of 6, with a couple that are always major disappointments to me. Hahaha. Sounds funny to say that, but it means I can't trust them, they constantly overstep boundaries and don't have the same values and ethics I have. I don't expect anything from them but occasional annoyance and nastiness and that's what I get. Perhaps there's some of that lowering of expectations would be helpful for you with some of them?

I don't see a problem with the links. I did email updates to her siblings for a while. I think these helped give them a sense of where their sister was in her progress, perhaps better than links would have. And, it gave me a positive outlet for my annoyance with many of them. My therapist suggested the emails and would pre-read them before I sent them so I didn't stir up stuff by showing my anger with them.

Doing those you still should keep an eye out. And, I also agree that a trip now may be a good idea, if he's been close to some of his siblings. Trips will just get harder and harder and then become impossible.

Good luck and big hug!

I bought the book “The 36 Hour Day” for family members so they would understand the disease. It helped some. I also updated them with a list of my DH behaviors via email. Monthly at first and then as new behaviors surfaced. It helped me communicate with his daughter who lived out of state. You can only offer. Many will still be in denial. If their phone calls upset him I would stop them and explain why to his siblings.

We often say here you can’t reason with a person with dementia. Unfortunately there are people without dementia that also can’t be reasoned with either. My brother read none of the information I gave him. If I pointed out specific recommendations for a particular stage he refused to accept that she was that far along. His head is firmly in the sand. Some people with dementia are also able to showtime. They appear perfectly normal for a short period of time, leaving others to think you (the caregiver) are exaggerating. The other part to this is that you sometimes need to look and listen very closely to what a person is doing and saying to recognize the issues. My mom can carry on a very normal conversation, you wouldn’t know there is anything wrong. In assisted living she had a sewing machine and bunches of material in her room. (We let her have it to give her some comfort and sense of normalcy) Because of her anosognosia ( inability to recognize her symptoms or limitations) she would talk about how she is sewing a quilt with such conviction and confidence anyone would believe her. She couldn’t thread the machine. If the siblings live long distance and only talk over the phone they may not be able to figure out what is happening behind the scenes. Although, I think, people wanting to know how a person with dementia is truly doing should know to talk with the caregiver for accurate information. Difficult family makes it even harder.