Seeking Advise - I am 25

Alexis Parkinson

I am 25 and my mother was diagnosed with early onset Alzheimer’s at 60. I am new here and need help knowing what to do. She’s about in the mild/moderate stage. My father passed away 2 years ago and the only family around is my younger brother who is 22. She has a sister that lives about two hours away. Family and friends are willing to help, but I fear that it won’t be sustainable having five different people trying to care for her throughout the week.

I am having a difficult time deciding if I should drop out of grad school and reduce my hours at work to be there for her. I fear that it may not be the smartest decision considering my age and can barely take care of myself. I believe the best option for her an assisted living facility. But it breaks my heart that I am choosing to live my life rather than take care of her. The feeling of losing one parents to suicide makes me want to drop everything to take care of her.

I am seeking advice from people who may know or have experienced a similar situation. Would it be sustainable if I did take care of her? When she approaches the later stages, I know I won’t be able to care for her and she will need professional help. Would it be easier on her if we put her into an assisted living facility earlier rather than later?

Carl46

Alexis, I am so sorry for the losses you are experiencing.

Please do not forfeit your career to care for your mother. I understand your desire to help her, but I would not want my child to do what you are contemplating. Your mother could live another 15 years, at which time you would be 40 and working part time. If you drop out of school now, you will regret it for the rest of your life.

Sandra Day O'Conner resigned from the Supreme Court to care for her husband. A year later, he was in memory care and had a girlfriend there.

sandwichone123

Go to grad school. That's likely what she wanted for you—we raise our children hoping they will be able to build happy, successful lives, so do that. There is nothing you can do to change the trajectory of this illness, but you can assure that she gets good care appropriate to her needs, while building your own independence and resilience. That's really all a parent can hope for.

Quilting brings calm

please take care that your brother and yourself get started in life- education, careers, relationships. That’s what your mom would want if her brain worked.

In addition- an assisted living facility gives your mom 24/7 care, activities, meals, laundry service, housekeeping, transportation to doctors, socialization with others close to her age. It will be good for her.

H1235

Welcome. Sorry you have to be here. Finish grad school. That’s what I would want my child to do in this situation. Ask yourself if that is what your mom would want. Some people with dementia can get grumpy and resentful as they lose their independence. Living with her and having to keep her safe by limiting her activities may only amplify that resentment. A lack of empathy is also common with dementia. If you give up everything to care for her and she doesn’t have the ability to understand what you have done (she may even become demanding) it is going to be very hard for you to not be a bit resentful. To be honest there will be a lot on your plate even with her in AL. Managing finances/paying bills, bringing snacks and supplies, coordinating with doctors and the facility. A facility also offers activities and a chance to socialize (even if she is a bit younger than most). When my mom lived with my brother it got to a point that she would just stay in her pajamas all day. Sorry I’m not painting a very rosy picture, but probably realistic. Do you have a DPOA and a medical poa? These are important.

Jo C.

You have received some very wise input. As a mother I would want my adult children to continue their education and professional pursuits. You are NOT abandoning her. Placement in this situation is not doing something TO one's Loved One (LO), it is doing something FOR the LO under the circumstances as they are and as they should be for both of you.

You are a very loving adult child wanting to do the best that can be. Think of it . . . in Placement, you will be present with her as much as you can in between your reality based important pursuits that should not be put off. She will benefit by receiving excellent care for her needs on a 24 hour continuum, and you will be there as much as is reasonable and not be exhausted and out of sorts from the exhaustion. She will not lack for care nor activities. She will be safe and secure 24/7. Our LOs have an adjustment period to the new way of being, IMPORTANT: We too have our very own adjustment period in which we must adapt to a new way of being and becoming adjusted to the differences. Surprisingly, most often, all is good and well. I have experienced something quite similar and was really surprised at how positive everything worked out; and in fact, in all probability better than if I were trying to do it all alone.

When we first begin to let go a bit, it can feel very difficult until we adjust and realize that our world is not going to come to an end. I actually imagined the worst things happening in my imagination to the point I nearly backed off of the changes in care. However, the reality was that it all turned out to be so much better and my LO actually benefitted from the adjustments.

One is not signing up for a lifetime of such a change; one can reverse course at any time should one wish to do so, but it is important NOT to do a knee jerk reaction to an initial hiccup or two. It should work well and once a bit of time passes, you can feel much more relaxed about moving forward.

Let us know how it is going, we will be thinking of you.

J.

Alexis Parkinson

Thank you all for all the comments! This means a lot to me, hearing and learning from others who are also dealing with similar situations. This has been a difficult journey and I know that it’s just the start. I do understand the emotional and mental drainage that will come with being her main caregiver. I realize that my mother wants the best for me and wants a daughter that is filled with energy and happiness. I realize that she needs the care that I am unable to provide. It just break my heart to watch her slowly lose herself. To change her home, environment, her comfort place. It will be a hard change for the both of us, but it will be temporary as she will hopefully find comfort in her new home. It is reassuring to read all of these comments.

I have the medical POA and DPOA in place. I am already managing her finances, coordinating and taking her to appointments. I have applied for SSDI and SSI. Set up a living trust. Am I missing anything?

For the most part she is pretty independent. She is starting to struggle with familiar tasks. Her short term memory is horrible.

Carl46

If her short term memory is horrible, AL now is probably a good idea. It is not hard to set a kitchen on fire. All you have to do is put cooking oil in a skillet, turn on the burner, and answer the phone.

I am so sorry about your father. I have lost loved ones to suicide, and I know how awful it is.

You have a good heart and a good brain. Keep using both, and you will get through this.

JDancer

As you look at AL, please try to find one with memory care so she may transition easier as she progresses

ALCB

I'm so sorry for the difficult time this has been for you and your family. If she seems okay now and your brother is willing and able to supervise her for the time being, that should work for now. But if he also wants to go to school/do things in life that require him leaving home, neither of you should feel in any way restricted by this. If she starts getting worse/falls/wanders, you could try finding home care so it's less stressful for her than moving. Do not drop out of grad school—I know how hard it is to get there and that's most likely what she'd want for you. Just remember—you are doing all that you can, and that's more than anybody can expect from you. Call her when you can.