Siblings lack of understanding

DonnaPJ

My DH was diagnosed with AD. He told his siblings and encouraged them to look for information about the disease. One sister is in the medical field. One brother is an educator. Another sister worked with individuals with disabilities. There is one other brother and one other sister.

They do not understand their brother's limitations at all. DH is early stage 3-4. As I have read in other posts, his reasoner is broken. His worry and anxiety are heightened. Yet they call and seek advice. This ramps up his worry, affects his sleep, his mood.

The worst was one sister asked for money. Fortunately, he said he needed to discuss this with me. I flat out said no and promptly hide the checkbook. I have told DH he is number one in all that I do and think about.

They all live a distance away which helps. Until these recent episodes, I was entertaining a trip for him to see several of them. Not sure that is wise right now.

Do I send them emails with links? Do I leave it alone and continue my gatekeeper role (Dobermann style)?

jgreen

Hi @DonnaPJ,

So sorry you find yourself in this predicament. Glad you are here though. You will find lots of love and support, so come here often.

Denial is a part of the grief process and is a powerful coping mechanism. Your DH’s siblings live far away and do not see him 24/7, so they can believe all is okay and go on with their lives. They may never get out of denial. So don’t expect much if you do send them info about dementia. They may not be ready to learn more. Another part of the grief process is anger, so be ready for that - from yourself and the siblings.

Glad you hid the checkbook. You might do the same with credit cards. And think seriously about hiding the car keys. Your insurance may be void if DH gets into accident after his diagnosis.

It sounds like you two have a great relationship and are communicating. If you haven’t done so already, seek out an Elder Care Attorney and get legal paperwork in order. I told my DH that we were getting older and if anything happened to either one of us we would want our wishes carried out - such as medical advanced directives and the like. While you are being the guard dog gatekeeper is good, even better is to have the legal stuff to back you up. Then you can let siblings know they need to go thru you to communicate with their brother.

My DH is late stage 5 and starting to show early signals of passing into 6. I monitor his phone and emails. I’ve let his close friends know if he tries to reach them it is because I’ve said ‘no’ so he’s looking for a way around me. I’ve asked these close friends to come up with a ‘therapeutic story’ to put DH off and then to contact me for the ‘real story’. So far we are living day by day.

Hang in there. This is a rough road. And as others in our group have said - this is a hard marathon and not a sprint. Prayers and hugs for you and your DH 💝

persevere

Not sure what you’re referring to on links but if you mean info on disease and what you’re going through as caregiver you can do it but they won’t read it. Be a Dobermann! If they are still stressing him out over things or asking any questions at all I would cut off all communications with that person!

TrumpetSwan

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.

Maru

If you are planning on making a trip, do it sooner vs later. Your DH will probably be his best self and they may or may not see anything different. They will be in denial for some time to come. I have found it infuriating when DH's siblings have made comments like "he's fine. i don't see anything", and they feed into DH's idea that he is just fine. But DH loves his siblings and wants and needs those relationships, so I bite my tongue. Too soon, it will be apparent to everyone that DH has demenita.

Some people are prone to worrying and stressing out. You can't protect your DH from all of it. You have to weigh the good against the harmful. If he is close to his siblings, then communication mIay be a comfort to him. If every phone call ends up stressing him out, that is another thing altogether.

CindyBum

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!

DonnaPJ

To all of you who have given suggestions and shared experiences, thank you. Your input is greatly appreciated. Legal and financial matters are all taken care of. DH no longer has control nor access to financial accounts.

Best thing I ever did was sign up for this website!

SDianeL

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.

harshedbuzz

@DonnaPJ

People don't get it. I think sometimes they don't want to.

Teaching children with special needs is not an equivalency and, IME, medical professionals can be some of the worst offenders in terms of understanding the realities of dementia for the person with the diagnosis and family caregivers. I even found my uncle who had supported his wife through his FIL's Alzheimer's completely clueless about care needs when his brother (my dad) developed it.

The 36-Hour Day is a fine book, but it's along read and not likely to be embraced by those who have chosen ignorance. For someone potentially reachable, Understanding the Dementia Experience (which is a free download) is shorter and more approachable for family and friends not elbow-deep in caregiving.

https://www.smashwords.com/books/view/210580

Your job is to protect your household and the wellbeing of those in it. If that means DH doesn't communicate with siblings except in speaker mode, so be it. Many of us use fiblets to help manage the mood and behavior of our PWD. They can also be used to keep meddlers at bay. One of my strategies was to "blame" unpopular (to my mom's sister who wished dad dead asap and to dad's brother who played armchair quarterback with me behind mom's back) care decisions on "doctor's orders".

HB

H1235

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.

debriesea

I also recommend “Understanding the Dementia Experience”. This is what was recommended here when a friend wanted to know about ALZ before coming to visit.

DonnaPJ

https://alzconnected.org/discussion/comment/259519#Comment_259519

I will definitely check out the article. Thank you so much. Sorry you found yourself with difficult family. None of us needs more on our plates.

Iris L.

If siblings are asking for money, you might gently ask them to return previous money lent because you will need funds for DH's care. This might get their attention. It's the truth, you do need more money for care.

Iris

howhale

So much good information being shared here by others. This site has been the best and only resource for meaningful, real, accurate and honest information. I experienced so much of what you describe in the original post. Initially I tried sharing articles, links and referrals to traditional websites to little, if any, help. I finally sat some down and told them about this site. For those who really wanted to know the truth, they signed up and read some posts. This site is the eye opener for anyone who sincerely wants to understand the truth and be supportive of you and your loved one. For the rest, I agree with what some has suggested, just ignore them and do not let them steal the precious time you have to give to your loved one. For those who do not want to learn, there is no teacher alive who can be successful in helping them. Do not let them steal what you are working so hard to protect.

sharingpeace45

Hello-

I can tell you what my theory is on all of this and it comes from my DHs personal experience with his siblings. I believe that if they accept that he has dementia, since they are genetic relatives, they know their risk of getting it increases. That is a can of worms that none of them want to open, because their father had it, their father's mother had it (their grandmother), and out of 4 of them, only one of them is normal. Just my theory…