How can I care for my mother on my own without losing myself?

lgm1991

My mother is 61 and has been diagnosed with dementia. I'm young - 33 and dating. I have a life to live but I am also the only person who can care for her. My father died 10 years ago and my living brother refuses to support her care as he "has done enough in this life" after my grandfather had dementia and father died of congestive heart failure. I'm wondering if I can even have a life, build a family of my own, with this. I currently live on my own and so does my mother but I've noticed a further decline in the last few weeks - she can't follow conversations, will go someplace and come home without doing what she needed, false memories, not following her medication regimen. I'm questioning if I am doing enough to support her or if I need to forego my independence to care for her. Where's the line between selfishness/neglect and simply trying to live my life?

​fesk

Hello,

I am sorry to see you are in this situation.

Only you can make the decision that you will be comfortable with. Also, no decision is permanent. If you try something and it doesn't work, you can try something else.

From what you are describing, it sounds as if your mother needs 24/7 supervision and should no longer be driving or living on her own. Is the legal paperwork in place (power of attorney, etc.)? If not, you should consult a certified elder law attorney.

You are very young and that should be taken into consideration. Taking care of someone with dementia is a huge commitment and can be overwhelming. There are different options to take care of her though - you do not have to take care of her yourself. You can manage her care (still a lot of work) - see if you can get a live in to stay with your mother; you can look into facilities. If you do decide to have her live with you, you will still need help. My mother has been with me for many years and I have recently needed to stop working because I cannot manage it all. You can also try hiring a geriatric care manager to manage her care (expensive).

My advice would be to arrange for care in her home now so that she is safe while you are researching options. This is never an easy decision.

M1

welcome to the forum. This is indeed a lot to take on at a very young age.

You definitely need to get the legal pieces in place to be able to make decisions for her, and you cannot expect her to always cooperate. Certified elder law attorneys can be found listed by location at nelf.org. You’ll need durable power of attorney for healthcare and finances, at a minimum.

How you care for her may be in part dictated by what she can afford. In home help, assisted living, and memory care are all expensive propositions. Very few folks can afford these out of pocket; my partner is in memory care at $10,000 per month. Does she perhaps have a long term care insurance policy, or is she a military veteran? Those can help.

As she is only 61, you may need to look into getting her qualified for SSDI based on her dementia diagnosis. This will then also get her qualified for Medicare. However, Medicare does not cover long-term care; Medicaid does, and there are ways to get her qualified for that that the attorney can also help with (requirements vary by state). This can involve moving assets into a Medicaid compliant trust, and spending down what she has. It’s very complicated, and the attorneys help is usually necessary to be sure you don’t do something that can affect her eligibility.

You can also talk to your local Alzheimers association chapter and Council on Aging to find out about day care programs in your area and local funding sources that might be able to help.

Iris L.

Is your mom a veteran or widow of a veteran? There is additional assistance. I suggest you read a lot of threads and you will learn a lot. Also look at the newcomers group for reading material.

Iris

SDianeL

so sorry about your Mom's diagnosis. What M1 said. Get paperwork in order, apply for SSDI so she can get Medicare. Talk to an attorney about Medicaid which will pay for care. Medicare won't. She would have to qualify financially and not have many assets. Usually she can keep a home & one car, but that varies by state. That's why an Elder Care Attorney is important. Memory Care facilities in my area are $6000 per month. More expensive in other areas. The question you must ask is whether you can live with your decision if you decide not to care for your Mom. Very tough decision at your age. This forum is a great place for support whatever you decide. hugs.

dancsfo

I'm sorry to read that you have to go through this.

In addition to the excellent advice in earlier replies, consider talking to a local social service agency to see what assistance or resources are available. This may be associated with the Council of Aging, but depends on the area where you reside. They may go by different names, but if your state has a central resource, it may reference all the different ones available locally.

harshedbuzz

lgm-

Hi and welcome. I am sorry for your reason to be here, but glad you found this place. It sounds like you've been through a lot already at such a young age.

I understand your sense of urgency around this feeling tasked for the responsibility of providing hands-on supervision and care for the woman who presumably did the same for you at a time when you are meant to be working on building your career, relationships and family. This is not something any decent mother would want for their child. Understand that being a caregiver can look differently depending on how you choose to do it.

Dementia care is typically a marathon, not a sprint. While EO like your mom has tends to progress a bit more rapidly than LO, you could still be well into your 40's by the time she passes. Your goal is two-fold, to make sure she's cared for and to make sure you come out OK from this.

The first piece to this mess in sorting out the legal paperwork so that you can act on behalf of your mom now that she can't. This might mean obtaining a DPOA if mom is deemed competent to sign (a fairly low bar) or obtaining guardianship/conservatorship if she won't/isn't. A CELA can help with this and also explain how custodial Medicaid works in your state for Medicaid planning if applicable.

Once that is in place, you need to assess the financial picture. As others suggested, now is the time to get started with SSDI. Does she own a home that could be sold for her care costs? Does she have investments, an honorable discharge from the service, a LTC policy? What sort of debt does she carry? This is also the time to lock down her credit with the 3 credit bureaus and make sure she doesn't have access to cash she can give to deadbeat relatives or scammers.

From there, I would look to place her in a AL/MCF. This doesn't mean you aren't her caregiver, it means you have delegated hands on supervision for safety to a professional team which is exactly what you'd being scrambling to provide with private hire HHAs but at a lower cost/hour. You will still have to make sure she's properly cared for and that she has what she needs. You still have to be prudent with her finances and This allows you to maintain some semblance of the life of a 33-year-old while spending time with mom as her doting daughter.

HB

sandwichone123

I agree with many here—priority issues are making sure someone has the legal right to make decisions for her (durable power of attorney and power of attorney for healthcare—two different documents). Having her live with you is not a viable long-term solution. Giving up your life for hers will not lengthen—or even necessarily improve—her life, but it will seriously limit yours.

Remember that when she is not able to make rational choices any more it is no insult to take those things over for, even if she gets upset. Taking care of yourself is a priority, not just physically but also socially and economically.

H1235

I am close to your moms age and you are similar in age to my daughter. I would not want my daughter to care for me in her home. I wouldn’t want that for her. Giving her medication, fixing meals, her asking the same question over and over and reminding her to shower don’t seem so bad. The problem is it’s so mush more than that. She may blame you for everything, constantly insisting on going home, need constant supervision, she will probably not be grateful, you may be accused of steeling or doing things you didn’t do and she may be very demanding. Losing their independence to dementia makes many very angry and mean. These things are mentally very very difficult. As long as you are getting her the help she needs(in whatever form that might be) you are not being neglectful. I agree with others that a durable power of attorney and medical power of attorney are very important. It’s sounds like she is still driving. Should she be? You have so much to think about and do. Good luck.

frankay

One thing you learn during this journey is that you learn about yourself. I had no idea I could be so patient and understanding and able to slog through everything, make decisions, and keep going . You have already shown that you are a good person showing care and concern about your mother. You are also concerned about yourself. That shows that you are alert, realistic and don't bury your head in the sand. Those are all assets and you must have learned them somewhere (maybe from your mother??). Good luck. Some tough decisons to make. This whole thing has freaked me out and I'm in my 70s. I can't imagine being faced with this is my early 30s. Yourlife is important.

aloe

> @lgm1991 said:
> My mother is 61 and has been diagnosed with dementia. I'm young - 33 and dating. I have a life to live but I am also the only person who can care for her. My father died 10 years ago and my living brother refuses to support her care as he "has done enough in this life" after my grandfather had dementia and father died of congestive heart failure. I'm wondering if I can even have a life, build a family of my own, with this. I currently live on my own and so does my mother but I've noticed a further decline in the last few weeks - she can't follow conversations, will go someplace and come home without doing what she needed, false memories, not following her medication regimen. I'm questioning if I am doing enough to support her or if I need to forego my independence to care for her. Where's the line between selfishness/neglect and simply trying to live my life?

Hi you can have your independence too I'm in the same boat my brother doesn't do much try to get a companion to be with her as well