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I'm working on having my father's FTD diagnosed. My family didn't want to invite me to my aunt's 60th birthday party because they don't want my father there. They are afraid he will give them a disease. He is filthy and smelly but he's not contagious. He doesn't want to go anywhere anyway but isn't it rude to deliberately tell a family member they are not allowed to go to a major family event? Now, I feel like I'm being ostracized because I'm associated with him. Aside from continuing to work on getting him help, how do I get my family not to disassociate with me?

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"Love me, love my Dad..."

I'm sorry you're going through this. You have it hard enough; it's bad enough family vanishing without trace when you need help, let alone vanishing and telling you not to come and look for them.

Their apparent, total lack of compassion for your father or interest in his welfare is also... unimpressive.

You've tried sarcasm, have you? "Gee, thanks for your help everyone. I'll do the same for you some day..."

How long do you think it will be before you can hope for any progress on your father's care?
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From your description of your family, I'm not sure why you'd really want to be closer to them. They're not helping with care for your father, lack compassion and understanding, so I'm wondering what value contact with them would offer.

I'm not being sarcastic or cruel, just attempting to assess the situation based on your description, and from that, it doesn't seem as though they have anything to offer. I do understand though that it's difficult to be ostracized because of your father's condition.

I think though that you're getting insight into the lack of support you could ever expect from them going forward. And from what you write, I think they'd only complicate life for you and your father if they decided to involve themselves in his care.

Perhaps you're better off w/o them. Again, don't take this the wrong way - but your description of them doesn't suggest they're very compassionate or understanding people.
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My heart goes out to you. On this journey, we learn peoples' true nature. And many who are "close" and "caring" reveal that they are appallingly self-centered. They'll be there for you -- as long as it's quick and easy and plays out like an AARP commercial.

We reach a point where we can no longer tack "but they mean well" to the end of every account of someone's boneheaded-ness. Because it's not true. It's an empty cliche.

Stand tall, take care of yourself, and find your strength where you can. (Hint: It won't be family!) Blessings to you. It's one heckuva road we walk.
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GardenArtist and Blackhole said what I was thinking. You are your own person and so what if siblings don't invite you to parties because they think their father has cooties or something. How childish of them! It is their loss. I just hope you can find some other support to help you navigate the waters. Many of us do, because family disappears as soon as the parents need help.
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Clean him up, because sooner or later your relatives will call the county APS (adult protective services) to check on his living conditions. You can call his MD about getting an order for a bath aide once a week. While they are bathing him, get his clothes and bedding laundered. Far better you make the call before they do.
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I am new to this site, but not knew to the situations. I was cast quickly and full force into the caring for aging parents. My mother, my father (they have been divorced for 34 years) and my mother-in-law. The one thing I have discovered is, no matter what, there is always "the one" that ends up with all the work! Everyone else wants to tell the world about all the sacrifices they are making over the situation, but their life is uninterrupted! Since March with NO help from family members, I finally realized, my life without them is less complicated than with them in it! I have closed many doors and have no intentions of reopening them. Yes it was hard at first. I pretty much lost my family. All they do is criticize everything I do! Yet, they offer no answers or help! Now, at least I don't have their criticism and I have surrounded myself with friends that are willing to help! Their support is genuine and they don't complain or leave and tell the rest of the world I am doing things all wrong! They are supportive and if nothing else give me real help, suggestions and organizations to contact to help with my situations! I remember one of these "so called" family members telling me years ago..... God picks your family, you pick you friends!!! God always has my back, but he always challenges us and sometimes, that is giving us family members we need to replace with friends!
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We've become a civilization of germophobes, haven't we. It sounds as though you are invited if you are willing to leave him at home, but you have drawn a line in the sand proclaiming you are a package deal. I understand you are outraged on his behalf, that family should be able to accept each other as they are etc. It may sound callous, but they want to have a pleasant, fun celebration and I can't say I blame them for being less than thrilled to include a dirty, smelly man who is apt to behave in strange ways or act out inappropriately, who admittedly doesn't care to attend anyway. As the caregiver you have become inured to his lack of hygiene and dementia and have learned ways to cope and find the good father hidden inside, those outside the situation can only see what is presented to them.
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I agree completely that these family members may not be the ones you either want or need in your life. I urge you to watch some Teepa Snow videos about getting your dad to shower/bathe so that he isn't filthy and stinky.

Bathrooms are very confusing places for people with dementia because the walls and floor all blend. Teepa explains exactly what to do to prepare the bathroom for someone with dementia. Both of you will feel better if he gets a bath on a regular basis.

Once he's clean, I also urge you to invite some of his loving and compassionate friends, family, or neighbors for a visit. Play his favorite music. Prepare some of his favorite foods. Look through old photo albums. Make as many happy memories with your dad as time and his illness will allow. Forget people who don't support you or him. Rise above their pettiness and lead by example. Good luck!
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Go to a site specifically for FTD. Try ftdsupportforum And the AFTD organization website. You'll find a lot of people who have been through this and more.
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First, this party is for my aunt on my mother's side. Aside from my brother and his daughter, none of the attendees would be blood relatives of my father. My father does have a sister who lives in Arizona. She sends a card and letter for his birthday, my birthday, and Christmas but otherwise never calls or visits. We last saw her some time in the 90's when she swung by for a day trip. I speak to my late mother's brother's wife (my aunt) quite often which is why she knows how bad off he is. If she had said she didn't want him coming because he's gross, I would understand. But saying he's contagious is ridiculous.
As for his current condition, he is having his last two hours of cognitive testing tomorrow. Then, two weeks later, we get the report. I'm deliberately holding off trying to force him to change clothes and get a hair cut until that's done because I want them to see how truly bad off he is. Once that's done, I will put clean clothes in place of his dirty ones and try to get him to get a hair cut. As far as whether or not any doctor will ever ok someone to come clean him goes, that's fully up to them once he's results are in. I will surely be asking them all about it!
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Just a few clarifications. My aunt who's not blood related is throwing the party at her house for my aunt who is my blood relative (but not dad's). I cannot physically bathe my father, and he would never agree to an attempt because he takes a daily shower (without soap or shampoo) and thinks he's just fine (like most people with FTD).
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What is it exactly that the family is afraid of? That you might have "caught something" from your father and will bring it with you, or that he would turn up with you as a kind of package deal?
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When my son was about 18 months old he was diagnosed with the first of his two disabilities. "The Donor" - as my ex-husband is now called - lasted about three months before he decided he couldn't deal with it, wanted a divorce and decided to return to his home country of Australia. We had a terrible marriage but I was devastated because I was terrified of raising a severely disabled child by myself. Plus I knew once he left I would never see a dime of child support nor likely hear from him ever again - how was I going to explain his fathers lack - of everything - to my son? Making matters worse, on his way out the door The Donor cleaned out our bank accounts and literally left me without a dime. Now, I have an annoying habit of finding the silver lining in any situation - it didn't take long to realize what a blessing this all was. No having to "co-parent", no shared decision making, no having this toxic jackass around my son. And as cream rises to the surface, it soon became apparent who my real friends were and which relatives I count count on. I was completely free to surround myself and my son with only genuine, caring, loving individuals. There were some hard times, no doubt about it - but it clearly worked out for the best. You have been given a gift - to see your relatives as they really are. Are these the type of people you want in your life? That all said - I would still caution you. As often happens with self-centered relatives, when they smell blood in the water - your fathers time grows near - they'll start circling like sharks. So now, make sure your fathers affairs are in order - DPOA, advanced directive, will with deserving beneficiaries etc. Protect yourself by getting your father cleaned up - don't give them ammunition for use down the road. And, as the saying goes - "When people tell you who they are - believe them".
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I'm so glad you have been able to make some progress getting your dad diagnosed. That is great news. Regardless of whether you make it to your aunts party, I don't think getting him fresh clothes and a haircut will keep the medical staff from being able to diagnose his dementia. I know you are dissappointed about the party. I hope you are able to get help with your dad soon.
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