New Caregiver Concerns

Started by

My mother just moved in with my husband and I from a nursing home 10 days ago. She has dementia / alzheimer's and is at the stage where 5 minutes ago is sometimes longer than she can remember. As is typical she does remember stories from the past, but she does not recall my father's passing 15 years ago, nor the deaths of her siblings.

She does ask about them from time to time as if they are still alive and gets either angry that "no one told her" or depressed that she doesn't remember. I am always honest with her, but frankly I am not sure if that's the best as the content of the talk is gone minutes later. What is often left is a mood change that I am sure she can't even explain. I am not sure that ther is a "right" answer as to how to handle things, but any advice is appreciated.

I am new to this site, and already feel some of the stress of this new 24/7 job that I see in other postings, but we are close to having her attend day care so I am holding on to that light. I am cautiously optimistic that she will in fact be able to attend that program as she seems to be slipping quickly, although is in good health physicall for an 88 year old.

I look forward to any responses and to reading how we all manage to get through this phase of life.


Welcome, Annie! It's best to start with prayer. (I'm talking to myself as well.) And you'll receive lots of advice, too. Will keep you in my thoughts and best wishes for your situation. You sound brave, thoughtful and capeable; a blessing to your mother, too. Glad you're here. Take care.
You will get through it and this site will help in many ways. For starters, since we are entering the holiday season and this brings added stress both to caregivers and AD patients, here are a few helpful tips to pass along to relatives and frineds about your current situation:

The holidays are a time when family and friends come together and share memories, laughs and good cheer. But for families living with Alzheimer’s, the holidays can also be a difficult time.

Caregiving responsibilities layered on top of keeping up with holiday traditions can take its toll on Alzheimer families, especially the caregiver. The person with Alzheimer’s may also feel a sense of loss during the holidays.

With some planning and adjusted expectations, your celebrations can be filled with joy and magical moments to cherish forever.

Adjust your expectations
No one, including yourself, should expect you to maintain every holiday tradition or event.

* Give yourself permission to do only what you can reasonably manage
* Choose holiday activities and traditions that are most important to you
* Host a small family dinner instead of a throwing a big holiday party
* Consider serving a catered or takeout holiday meal. Many grocery stores and restaurants offer meals to go.
* Start a new tradition. Have a potluck dinner where family or friends each bring a dish
Involve the AD patient in the festivities as much as possible.
Typical activities the AD patient may be able to handle with your help include:
* Wrap gifts but don't expect perfection.
* Set the table. Avoid centerpieces with candles and artificial fruits and berries that could be mistaken for edible snacks.
* Talk about events to include in a holiday letter
* Read cards you receive together
* Look through photo albums or scrapbooks. Reminisce about people in the pictures and past events.
* Watch a favorite holiday movie
* Sing favorite carols or read biblical passages
Most of all, try to keep your sense of humor and remain upbeat even when you want to cry. AD patients are very sensitive to stress and may translate this as resentment that you have to care for them--especially during the holidays.
Thanks for your responses. Being new here I am not sure how to respond to each separate response so I will thank both of you in this way until I learn the ropes.
Hi Annie,

I'm new to this site also and have already found it to be very helpful!

Why did your mom come home from a facility? I'm just getting to the point where my mom is going into a facility.

This is the best way I can explain my situation and you see if it works for you: When we as daughters are placed into this position of caring for our moms when they are declining like this, we are put into a patient/nurse relationship as opposed to a loving mother/loving daughter relationship. I don't know about you, but I never wanted to be a nurse. I don't like smells, bodily fluids or constantly being involved with someone's 'toileting' or other issues. I know that my mom never wanted to be my 'patient'. In the beginning of her diagnosis she was extremely abusive and combative. We both have worked so hard to overcome these issues and now I feel she is ready to be placed into assisted living. As I stated in a previous post, she can be touched and assisted by others without freaking out. that was not the case in the beginning! I was very worried that she would get terrible care because she was a pain in the butt.
After 5+ years I am simply burned out and need a break. Mom is in pretty good shape (89) except for the dementia. maybe all we'll do is respite care for a few months and reevaluate, but I am really fried and need to start living my life again as opposed to living the life of an 89 year old woman with dementia.
I look forward to going to her new home and visiting with her without having to bathe her, wipe her butt, wash up the mess, etc. In other words, I look forward to becoming her daughter again and letting someone else become her nurse.

My message to you is: don't wait until you're fried, just soft boiled!

Good luck,

Thanks so much for your input. In several ways we sound similar as it is quite an adjustment on my part to be doing "nursing". I am right there with you on the smells. Fortunatley my mother doesn't require much care in that area yet. I really do get what you mean about the mother/daughter relationship turning into a caregiver/drill sargent/nurse/therapist, etc.

To answer your question my mother came out of the nursing home for several reasons. The money ran out, and amidst having issues with Medicare ( via a very nasty worker there) I also became increasingly more concerned with the level of care she was getting. That coupled with some huge life changes for myself finally coming to a really nice conclusion, my new husband and I wanted to take on the family approach while we still had it in us and while my mother was still not so bad as to require more than we thought we could give.

As I am sure you realize, we were not as well prepared as we had hoped, but I think oce she gets in the adult daycare program and routine we will find our way back to a more normal life. I am certainly not a hero, I know I will eventually get to where I cannot care for her if her condition worsens but physically she is quite well, at least for now and for 88 years old.

I truly understand why you need a break and know full well that I may get to that point as well. I hope it works out well for you. Thanks again for your thoughts.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support