Falling Apart Caring for my Mom

troubledone

Hello. I am not doing well. My dad had Alzheimers in the last 7 years of his life, and I cared for him. I thought that was all over when he died in 2017. Then in 2020, it started all over again with my mom. It's been 5 years now, and I'm going absolutely bonkers. My life is falling apart caring for her. Almost everything is a mess, and I often feel I have nowhere to turn. I found this forum, and I'm hoping I can get some help.

I absolutely hate my life right now, and often wish I were dead. The only reason I am glad to still be here is because without me, my mom would have no one to care for her. But I am falling apart and am so angry about everything. Hoping to make a friend or two here to help me get through this, and maybe I can help one of you too.

PS - I'm a lawyer, have a PhD in psych, am a bronze-star nominated Iraq war vet, am a two-time TEDx speaker, and... absolutely none of this has prepared me to deal with what I am dealing with now.

M1

Welcome to the forum, there are many of us here who understand what this is like. Glad you reached out. There is a 24/7 help line 1-800-272-3900. Call and ask to speak to a care consultant. if you care to post more details, people here could give you more specific suggestions. You don't need to be a victim of this disease too.

NizhoniGrrl

It is truly the worst. I’m also balancing a career and some serious health issues (MBC), after being a caregiver and responsible person for several relatives, now all deceased including my only sibling. No one expects to be in this situation ! I decided after a time with my mom living with us, and then IL, that the best place for her (and my sanity) was assisted living. It’s still not easy but it is easier. When she was living with me I really became resentful and that wasn’t good for her either. We all have limits. Your life has worth and meaning, too. Please look at options and read on here. Sending hugs!

Emily 123

Hello troubledone,

Ideally, caregiving solutions should incorporate the caregiver's needs, especially since progression can take years. Are you trying to keep mom in-home? I think that's challenging even with tons of support. I'm in awe of the folks who can manage that.

In my case, even if my mom and I had gotten along flawlessly (and I had endless reserves of patience) I know that I couldn't meet the level of care and vigilance required as her dementia progressed. Even with stage 4 behaviors it was a challenge to prevent her from trying to do things alone that had become unsafe for her, or to 'help' with tasks that actually ended up creating more work for me when I had limited time already. I'm still working, and it was hard to carve out uninterupted time where I could focus.

Even if you have assistance, there's no downtime from managing the disease. And because of the dementia your mom can't appreciate how much of your reserves you're devoting to her or that you're at the end of your rope. It's physically and emotionally exhausting, given how much constant interaction is required.

It's absolutely okay to safeguard a parent with dementia by placing them in a care facility or group living situation so that they're in a structured, safe environment. That, at least, will take the minute to minute 'manging' off your plate, and allow you to go back to re-establishing a balanced dynamic, as well as allowing you to have some of your life back.

The dementia may not allow your mom to be content with her situation no matter where she is, because she'll feel lost in this time and want to be back in a part of her life where she felt whole—that's not something you can give back to her, and you can't help that. It may be that the best you can do is situate her where she's safe and healthy, and (I'll say it again) you restore some balance to your relationship. I don't think your mom would want you to be drowning in her care.

If I've misunderstood the situation please accept my apologies.

Dementia44

> @troubledone said:
> Hello. I am not doing well. My dad had Alzheimers in the last 7 years of his life, and I cared for him. I thought that was all over when he died in 2017. Then in 2020, it started all over again with my mom. It's been 5 years now, and I'm going absolutely bonkers. My life is falling apart caring for her. Almost everything is a mess, and I often feel I have nowhere to turn. I found this forum, and I'm hoping I can get some help.
> I absolutely hate my life right now, and often wish I were dead. The only reason I am glad to still be here is because without me, my mom would have no one to care for her. But I am falling apart and am so angry about everything. Hoping to make a friend or two here to help me get through this, and maybe I can help one of you too.
> PS - I'm a lawyer, have a PhD in psych, am a bronze-star nominated Iraq war vet, am a two-time TEDx speaker, and... absolutely none of this has prepared me to deal with what I am dealing with now.

Hello I understand exactly what you are feeling. I also take care of my mom and I feel like I am losing it.

troubledone

https://alzconnected.org/discussion/comment/226714#Comment_226714

Thank you for the welcome. I have noted the help line. That is helpful.

troubledone

My concern with a facility is that it will cost more than what it's costing right now. If she runs out of money, then she's back to living 'with me'. We live in separate apartments in same building, because I tried living with her, and it was really bad. So this is the best I can do. I feel like there is no win-win. No matter what decision I make, it will be a bad one.

troubledone

You are completely right. I am experiencing all that you mention. Part of my great sadness is that my dad had Alzheimer's too, and he made bad financial decisions in that time. After he died, I had to sell all the real estate in the family, because there wasn't enough money to keep the family home and the family lakehouse, both of which were in the family for decades. And at the time, I consulted with my mom, not knowing her condition, and she made it clear she wanted the houses sold. But in reality, it was the disease talking. Looking back, I wish we had just found renters, or had taken out a home equity line of credit, or taken out a mortgage on the homes. But I didn't know then what I know now about real estate.

So I am struggling greatly, living in the past. We used to have such nice houses. Now we both live in small apartments, and it's a big fall from grace. I'm sad about the life we once had, and now I'm living in a mini hell, at a fraction of the standard of living we once enjoyed.

And sadly, 95% is the result of Alzheimer's. First my dad's, that put us in the financial difficulty, and then my mom's, that helped contribute to the poor decisions I made selling the houses.

Now I am stuck doing an admirable job managing my mom's finances, but it's a constant juggle, and the money going out every month is still more than what's coming in. I'm working on the investments constantly (some in stocks, some in real estate, some in alternatives) but it's like a full time job. Managing her money; managing her doctor appointments; managing her mood swings. I used to travel often. Now I rarely do: if I take her, it's a nightmare; if I leave her, it's a nightmare.

troubledone

Yes, I feel like I'm losing it too. I have this horrible heaviness in my head for hours every day. It's overwhelming. So much going on. Caring for her, and also trying to keep my life and dreams alive. It's a challenge, and not fun.

Paulokc

I was able to get my moms Dr to adjust her medication. She still drives me nuts and won't do anything I ask her to do but at least she doesn't go down the street to visit a neighbor who died 30 years ago and seeing bugs that are not there. She seems to be doing a little better. I have no help all my family has died.

Anonymousjpl123

I didn’t have exactly your experience but I know what stress about financial decisions, being a sole caretaker, working, and trying to maintain some modicum of self care is like.

Hard!

You mentioned you are experienced, educated and have had a career. None of this matters when we are coping with grief and the every day challenges that come with caregiving. I urge you to call the care line. It helped me so much. Even just vent. I cannot imagine having to do this again after what I am going through with my mom. Also taking a bath, a walk, that stolen hour or two just for yourself to remember you are alive and in the world. That said, I have come to a place where I finally got things settled down. You will get through this.

Smilescountry

It is difficult trying to do so much as just one person. Reaching out to the help line is good. Personally, I find that meeting one on one with a therapist to be very helpful. I need that for myself to be able to care for my parents.

MaryEllenDaughter

Welcome, I am caring for my Dad. I am a PH.D Mental Health Counsler who has worked with street kids and medical clients. There is NOTHING that can prepare you, you just have to be the kid. It is hard to balance. My Mom died a month ago and I basically moved in with my Dad. It has been quite a learning experience. He is a gentle man so I am fortunate.The grief is overwhelming sin’s it? Grief for what you had, what you anticipate. I get it. Always here to listen.

tiredg

Are you able to consider hiring a live in caregiver. Or, if the needs aren't great yet, a companion. I believe the companion care is less money. It would give you a break from caregiving. I am struggling too and have no experience with dementia. It is very hard to handle. You're not alone.

Emily 123

It's not your fault and it sounds like you're doing a good job making lemonade out of the lemons you've been handed. The degree of cognitive loss very much seems like normal aging at first, and often decisions about handling finances, etc., are made before family realises what's going on. Another alternative might be a care home that could allow your mother to age in place until the end. They can be a bit cheaper than AL/MC. Your mom's doctor should be able to write a consult for a social worker so they can assist you, though word of mouth is always helpful. Have you been able to initiate Medicaid?

troubledone

https://alzconnected.org/discussion/comment/226756#Comment_226756

My issue is that she refuses to take medication. She refuses to believe she has any problem whatsoever. Today, in the car, she began screaming like a banshee, and hitting me. It was terrible. I can't be with her in closed spaces anymore, it seems. I am so frustrated with her. She is just dragging me more and more down.

troubledone

https://alzconnected.org/discussion/comment/227002#Comment_227002

Hi Mary. Yeah, nothing can prepare you, and even having been through it before with my dad hasn't prepared me for this insanity of my mom. It was bad enough with my docile father; it's a nightmare with this woman who is as strong as a bull, very volatile with her emotions, and 100% bonkers. A bad combination.

I'm sorry to hear about the loss of your mom. And your dad's situation.

I'm most angry at my two sisters. WHERE THE HECK ARE THEY?!

troubledone

https://alzconnected.org/discussion/comment/227233#Comment_227233

No one wants to stay with her for long. She is VERY difficult to be with. I used to live with her. I had to move out because she is just bonkers. And she yells. And is angry. Dr. Jekyll and Mr. Hyde.

Are there companies that do companion care?

My big concern is running out of money. I don't want to start some service only to have to pull that service later…

troubledone

https://alzconnected.org/discussion/comment/227238#Comment_227238

For better or worse, my mom isn't at the poverty level. We own two condos together that we rent. So her assets will always be more than the medicaid poverty line (as far as I know). So I don't think medicaid will ever be an option. Further, there is the 5-year look back rule anyway, and she certainly wouldn't pass that.

I am so sad, and angry, and frustrated.

troubledone

The worst is when she starts hitting me. I hate that I cannot defend myself. Why, just because someone is a woman, and elderly, must I (a man) accept her violence? When she hits me, I want to punch her in the face. But I don't, and I have to take the blows, and my back ends up out of wack, knees banged up, scratches. It's not pleasant.

Do any of you have a violent loved one?

H1235

It sounds like she needs medication! It’s not good for her to be so upset. Can you get her to a doctor? Be very clear about how she is acting. It can take a while to figure out what will work best and the correct dose. If she starts swinging at you in the car I would drive to hospital emergency and push for a geriatric psych evaluation. As far as money goes, dementia is expensive. If there were thing done that would disqualify her because of the 5 year look back, have those things stopped? Eventually those things will be beyond the 5 years. My mil was a wealthy woman. By the time she passed it was all gone. Property and investments may need to be sold (kind of tricky if you co-own) Have you seen an elder law attorney or maybe a financial advisor? Now is the time to figure this out. The uncertainty of not knowing how long her money will last must be stressful. Getting some answers and coming up with a plan for the future may lessen the stress a bit. Keep in mind AL and MC facilities often have a waiting list. Good luck.