What have been the best and worst parts of your week as a caregiver for a loved one?

Hi Donna!  My mom is 88 and suffers from dementia, as well.  I live with her now, and I am her primary caregiver.  She can't be left alone.  As much as I love her and consider this time with her to be a gift, it can be overwhelming to never have any truly "free" time.
 
One of things that we've done that you may want to consider is to put your mother in hospice.  My mom has been in hospice almost a year now.  I absolutely could not do this without them.  One of the benefits of hospice is volunteers.  They will come and sit with your mom to give you (and your husband) some respite.  I believe there is also a respite benefit where Medicare will pay for your mother to stay in a skilled nursing facility for one week every quarter.  I have not used this and probably won't, but it is an option (although you should probably check into the details).
 
In addition, because I cannot care for my mother entirely on my own, we have caregivers.  One is through an agency, one I found on Care.com, and one is a nursing student that I met through an aquaintance.  It can be expensive depending on your mother's needs.  However, having someone come in on the weekends - maybe a Saturday morning - will give you the time you need to shop or have lunch or whatever.
 
I have a sibling, as well.  She comes about once a week for around an hour.  It is hard and very frustrating.  The way I've learned to deal with it (and it can be a struggle) is to remind myself that we all make our own choices.  I have to live with mine, and she has to live with hers.  Best,  Michelle

Lack of privacy and lack of time for yourself as a caregiver can take its toll. I am a big proponent of regular respite to avoid burnout, as Michelle wrote about. Hospice is a wonderful resource if your loved one qualifies. I recommend speaking to your mother's physician about this. ARCH National Respite Network (http://archrespite.org/) is a great resource to help caregivers find respite and work this into their lives. The Alzheimer's Association also has great resources for dealing with behavioral issues (www.alz.org) as well as schedules of support groups in your area. I've found it very validating to connect with others going through a similar experience, just as you've done by writing here. And like you said, Donna, it's all about taking things one day at a time.

How have you all been able to make time for even small amounts of respite in your daily lives? I know that it's not easy to fit this in.

Hi Donna!  If Heartland doesn't work out for you, I would recommend Hospice Care of California (if you're in southern California).  They're great!
 
If you would like any additional ideas on caring for your mom at home, please let me know.  I had to learn alot in a very short period of time; if anyone can benefit from that information, I would like to pass it along.
 
All hospices are a little bit different, but this is what my mom's hospice provides for her:  a hospital bed - request an all electric one because it will be easier on your back, a bedside table, a wheelchair and a pottie chair.  They should provide a shower bench, too - we use the pottie chair instead.  They also send us a box of supplies every month - pullups, wipes, disposable bed pads, and peri (personal care) wash.  In addition, they've given us dry washcloths, Bag Balm, Calmoseptine, disposable gloves, and washable bed pads.  Not to mention, that they pay for and have delivered some of her medication.
 
If your mom will use oxygen, have the social worker send something to your city; it will help reduce the electric bill.  The medical director is the one to fill it out and hospice will send it in.  If your mother or father was in the service (during WWI, WWII or Korea), there may be some benefits there for in-home caregivers.  It's a hassle to file (not so much that you need to pay someone to do it for you, though), but it could be worth it.  Establish your application date early, as they will back pay to that point.
 
I'm glad you've decided to give yourself a break.  As the saying goes, if you don't take care of yourself, you won't be able to take care of anyone else!  Write when you can - no need to put more pressure on yourself!!  Best,  Michelle