Have no support

Eloise0304

Once I reached out to family and friends about DH , they avoid me like a disease. Now I am fully isolated and am constantly apologizing for him or arguing with him.

CarolinaWren

I’m sorry. I really don’t have much support either. It’s very lonely.

aronia

I don't know how you don't argue. I'm really new to this as well. I do ok for several days and then I lose patience. I'm fortunate to have some support from our son who is disabled. I hope you find support. I hear these groups can be good.

BPS

I was surprising to me how people you have known and helped physically and financially for years can just disappear or offer to help and never follow through when dementia is involved, but it seems to be pretty common.

tonyac2

I don’t think people really understand how to interact with PWD. It’s uncomfortable, messy. Unless you live this life, you have no idea what it’s about or how much help the caregiver needs. Not just with their LO, but emotional support, someone to talk to, just someone to care that your life is extremely difficult with no real answers. I guess like Bill says, the Calvary isn’t coming. :( That’s so sad to think about.

JulietteBee

@Eloise0304

I can so totally relate! I shared my mom's dementia diagnosis with her siblings. Mom has told NO ONE. I secretly hoped they would have started visiting her more often. They are not short on funds.

I certainly thought they could at least reach out to me to find out latest updates or even check on me. I am an only child who has been fighting my own life threatening disease for longer than mom has had dementia.

Sadly, as previously stated, "the cavalry is not coming" and we must accept the reality of the situation we find ourselves in.

I am now of the belief that people are unsure of how to interact with an adult-toddler. My mom's mannerisms and logic is fully recognized as those of a pre-teen.

Virtual hugs to you & you are not alone! Come online for emotional support as often as you need to.🫂

Chris20cm

Very true. So common in fact, that someone should have told us. Your family will distance and all but totally desert you and your LO. You will yearn for help and respite but you won't get much, if any at all. I asked also and always got turned down except once in 8 years, for two days.

Don't make the mistake of counting on family to give you relief. If you somehow should be fortunate enough to have a family member help, be grateful.

Sorry but that's the sad truth, in many if not most cases.

Metta

One of the reasons I joined this community was to break the isolation. DH was abandoned by both of his adult children (in their 40s) after being an exceptionally dedicated and generous father their whole lives. I was astonished. Before his illness, he used to talk with his daughter on the phone 3-6 times/day, and we moved to the town in Florida where we live because his son lives 20 minutes away. He gave his children everything he had. Now all we have is this house and his pension, which ends when he dies. I think they are angry there is nothing more for them. It is heartbreaking. He has lucid moments when he cries looking at the photos of his grandchildren.

Chris20cm

https://alzconnected.org/discussion/comment/249688#Comment_249688

This community, along with the development of some online supportive friendships with others in similar circumstances, have been a wonderful lifeline for me, otherwise the loneliness, isolation and ambiguous loss of the love of my life, would be intolerable.

Thank God for others who care, even if we have never met them in person. It is validating and eases the pain. Please keep communicating, and feel free to rant sometimes, I do.

addy103

https://alzconnected.org/discussion/73671/have-no-support

I have a lot of support and still couldn't deal with him, but your right people don't invite you out socially the way you do. Find a support group, get a certified elder lawyer.

CassLoftis

https://alzconnected.org/discussion/73671/have-no-support

I have no support here either. It is a very lonely road. Do the best you can and take care of your own wellbeing.

Chris20cm

https://alzconnected.org/discussion/73671/have-no-support

This is agonizing, I know. It's nice to have people on this forum who care, but it would be so much better to have help and support and encouragement from family, instead of isolation. There's a reason why solitary confinement is considered the ultimate punishment.

SDianeL

sadly it’s common for many reasons. I read this post a long time ago and it is so true:

https://alzconnected.org/discussion/71052/the-cavalry-is-not-coming-9-year-edition

H1235

I do not care for mom in my home, so I know it’s not even close to what some of you are going through. I just moved mom from Al to snf. I handle all the finances (just jumped through all the hoops and was finally approved for Medicaid), bring her supplies, clean and sort her hoarders home, take her to all appointments and purchase all medications. Some of this responsibility will go away now that she is in a snf. My brother is useless. He wants mom to make her own decisions and doesn’t want me rooting through her personal things (she has rights). My husband sometimes will give advice if I insist, but usually doesn’t want to get involved, he feels it’s something my brother and I need to deal with. My kids have their own lives and unfortunately don’t even want to hear about my problems let alone help. They also rarely visit mom. My moms best friend told me I was an awful person and my dad would be ashamed if me for putting her in Al. I don’t even want to know what she thinks about the snf move. My brother is inviting her to a family function at his house like there is no problem. I will not be attending. I am on my own. It’s not even just the physical work involved, it’s that there is no one to help me plan, to toss around ideas with. Things like, what should I do next on her house?, does she need another pair of pajamas ( she is a hoarder, so she always wants more stuff), I’m the only one to say no(my brother will bring her whatever she wants), the house insurance needed to be changed(it’s unoccupied), what coverage do I want, should I have the water shut off…. It’s just so much responsibility. Any mistake I make is thrown back in my face by my brother that does nothing. I can’t even imagine the confinement many of you are dealing with on top of all this.

Chris20cm

https://alzconnected.org/discussion/comment/250610#Comment_250610

Thank you so much, Diane, for posting this again. I needed the reminder, and the changes from the original are very good.

It's comforting in a big way, to keep in mind that we can't expect family members to do things that they are opposed or uncomfortable with. It's really up to us as caregivers, and we can accept all the challenges involved.

trottingalong

https://alzconnected.org/discussion/comment/250632#Comment_250632

Your mom may not be in your home, but don’t sell yourself short. You are a 100% caregiver with all the burdens it entails. Having helped my FIL with my MIL who had dementia (now my husband has it), I find it easier caring for my husband than caring for a parent. You take care of you. Easier said than done, I know.