Recent Diagnosis

junejoon · May 9

I am really glad a community like this exists. I recently moved back to live with my family since my mom's dementia diagnosis earlier this year. I was working and living a few states away and am a few years out of college. It has been a lot of big changes for my family recently and I am never sure I am making the right decisions. I am/will be the primary caregiver since my sibling and dad don't really know how to be helpful. So many of my mom's symptoms were "hidden" but I also was not really home that often since I lived far and I feel guilty about not having been as present. My sibling and dad live with her and didn't notice any changes but they also are not the most observant/present. My mom is extremely unhappy in her marriage and is requesting that I ask my dad to move out to start the separation/divorce process. I have known for years that this is what she has wanted to do but my dad and sibling have no idea. I feel that it is the right thing to honor her wishes and help her with this process but I am just feeling so heavy about all of this. I have been feeling a lot of jealousy lately. I am watching all of my friends talk about their futures and I know everyone has other responsibilities that aren't always visible but I have been feeling upset about the fact that my future feels vastly different than I expected. And then I start to feel bad about getting upset. The last thing I want to do is make my mom feel like a burden. But she has already been so distraught about my moving away from the life I was starting elsewhere. She was a caregiver for her parents with dementia and already feels bad about the toll it will take on me. I always try to comfort her but she always says she knows that I am just trying to be nice and make her feel better.

JulietteBee · May 9

I am so sorry to hear of your plight. Fortunately, it is not unique to you.

My mom is frequently crying & apologizing to me for being an added "burden." I have constantly had to assure her that she is not a burden.💔

You are going to be spectacular!😘

Victoriaredux · May 9

Hello JuneJoon-

I was concerned to read your note. There seems to be a few areas that you may wish to explore yourself with a counselor -the Alz Assoc has no charge social workers -

"Get Help and Support, Day or Night 800.272.3900

The Alzheimer’s Association is here all day, every day for people facing Alzheimer’s and other dementia through our free 24/7 Helpline (800.272.3900). Talk to a dementia expert now and get confidential emotional support, local resources, crisis assistance and information in over 200 languages. It's ok if you don't know where to start. Just give us a call and we'll guide you from there. "

Also, your Mother should probably visit with an elder law attorney [even if she is under whatever age seems "elder" to you :) ] but not with your Dad so that your parent's financial situation can be discussed with her due to her Dx and her expressed desire to divorce, also the attorney can evaluate her ability to still be deciding such a life changing event. Dementia can involve damage to executive judgement decision making so her expressed desire to divorce can perhaps be a product of that . Her brain feels "off" to her so she blames your Father.

If she needs placement in the future a divorce may make the financial situation impossible - medical insurance , housing etc- especially if it is you and her alone. Dementia is a financial nuclear blast for any family's balance sheet. Placing her ,maybe in Assisted living first -then Memory care but staying married may give her the separation she says she wants from your Dad but give her a more secure financial future.

The disease course can be up to 20 years . You finished college and got a job, not easy these days. This isn't Jane Austen's England where the unmarried daughter gives up her life care giving and then survives on knitting, your ability to form your own nuclear family ,get career satisfaction and a secure retirement would be impacted.

Your Mom has expressed she is concerned about the career future you started and stopped . She was able to have a family . She raised you with the hope you'd have a full and happy life. You deserve that.

It maybe that spending the next whatever years care giving is that for you - but taking time now to explore your feelings and concerns with a counselor will hopefully make whatever choice is made by you one that remove any doubt that it is the right one. I wish you the best .

H1235 · May 9

Welcome. People with dementia often have anosognosia. This is the inability to recognize their symptoms or limitations. It’s very difficult. The pwd often blames the caregiver for everything. They have a feeling of gaslighting. The number one rule with dementia is never try reason with them. Logic is often lost to a person with dementia. Discussions of this type often lead to arguments. If your dad doesn’t recognize your mom’s dementia this could be fueling a lot of arguments. My mom does not like me very much these days. Is it possible this is what is happening with your dad? It’s not selfish to think about your future. As a mom I would want my daughter to take me to Al vs ruining her future career taking care of me. This is an important time in your life. I would encourage you to find balance between your moms care and a life of your own. Even Al is a lot of work for a caregiver.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

Emily 123 · May 9

Welcome!

Your mom's right. She knows what level of care this disease requires. Take her concerns to heart. She didn't nurture you into a successful, independent adult in order for you to become tethered to her. You're choosing what you want to 'fix' for your mom while disregarding her concerns related to your own needs. The best caregiving plans consider the needs of the caregivers too.

It may be that she's wanted a divorce for a long time, but when she was whole in her mind she never pursued it. Now she's at a point where the disease will make it hard for her to adapt to major changes. It would be tempting to act on what she's saying, as she looks and sounds the same, but her capacity to understand the ramifications of decisions may not be good. It's a big step as a caregiver to be able to do the 'looks the same, sounds the same, but thought process not so great' with a parent. VERY hard to not try to please them. Very hard to change the parent/child dynamic.

Keep in mind that the disease is affecting her ability to balance multiple pieces of information and assess how decisions would impact her future. It removes the brain's abilities to route, interpret, and 'save' recent information, and so the person becomes susceptibile to latching on to emotions instead. These will be the things that a person returns to, and can be triggered by visual cues or verbal reminders. It helps to avoid prompting or engaging in discussions about things that are negative—you're going to get them dwelling on a negative emotion, which creates a feedback loop that exacerbates their (and your) anxiety.

A big step for the caregiver is to change their own goals for their person. It's hard, but to best support them and to stay sane and objective you must pivot away from a primary goal of trying to make them happy. Rather, the primary goal becomes ensuring that she's physically and financially safe. Your dad's and sibling's lack of responsiveness is certainly irritating, but ask yourself if she's safe, healthy, and fiscally sound in her current situation. Will the current situation support that until her end of life? If so, you may want to rethink--if affordable, perhaps moving her to a care home would remove her from your dad, give her companionship and care, and meet everyone's needs better.

I would definitely recommend a visit with her healthcare provider, no matter what the plan is, to discuss the situation at hand and to see if adding a mild anti-depressant or anti-anxiety med may help her be less focused or stressed. Being anxious but struggling with a brain that's challenged to manage information is tough, meds may help her feel calmer, which will also give you some breathing room to gather your thoughts.

As others have said, visit an eldercare lawyer and carefully weigh whether it's better financially for her to separate from your dad or to actually divorce. Not trying to discourage you from helping your mom, just that the disease's course can be long and uses up resources. Marathon, not sprint.

understanding-the-dementia-experience.pdf

harshedbuzz · May 9

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

You've already gotten some very sage advice. I will add a couple of thought based on my own experience with parents in which one had dementia and that of an in-law.

My dad was the one with dementia. Mom was the one who wanted the divorce while dad was the one with dementia.

FWIW, much of the unhappiness in the relationship was attributable to the dementia. It's important to understand that many of the earliest symptoms of the disease, noticeable before memory loss, are changes in mood, paranoia, loss of social filter, apathy, poor executive function, repetition, and a lack of empathy. One skill that remains well into the disease process is emotional intelligence. If dad is frustrated with mom's moodiness, accusation, her not holding up her end of the household chores and he channeled this, she would absolutely pick up on it.

Divorce may or may not be possible. Aside from the financial devastation after, the divorce itself would be expensive. Both would need legal representation, and mom would need a guardian ad litem to act on her behalf as she doesn't have the capacity. You might be named her guardian/conservator after, but not necessarily especially if your sibling disagreed with the matter. In divorce, mom would have had a 50/50 split of assets and likely would have had to fund his health insurance as she'd always done. It would have financially ruined them both.

In the in-law family, the DH was sick and the wife with dementia wasn't up to his care. He didn't really understand his condition, so the kids split them up. A son (well off business owner whose wife was already managing an aunt with dementia in one of their rental properties by bringing in 24/7 carers) over saw her care. A daughter who was older, single and working a McJob moved into oversee dad's care. The 3 other kids filled in as needed and made sure the parents could visit each other.

Your relationship with mom would likely change if you did decide to be her caregiver. She's probably pleasant with you as a kind of showtiming. If you became the one insisting she shower or change her Depends, she will turn on you. If I had a nickel for every woman had their heart broken by a mom who was formerly her "best friend", I'd have a lot of nickels.

HB

sandwichone123 · May 9

Rather than divorce, consider moving your mom out to another situation, perhaps an assisted living that also includes a memory care component. That would remove her from her spouse but also allow you to build those aspects of life that young adults are responsible for building, while continuing to offer her care and support. It's possible that once she's in a more appropriate setting, your dad and sibling can also begin to give and receive support with you.

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