Dear Karen,
Thank you for sharing this very moving story about your mother. I understand what a heart-wrenching decision it was for you to place your mother in long term care. I hope you will take consolation in knowing you weighed all of your options and chose the one that would be best for your mother because of her need for complete care. The transition from one living situation to another is not easy for a person with dementia. There may be an adjustment period for her but you should know that after a short while, your mother will settle in when she begins to learn her way around and recognize the facility as her home.
You are correct in taking one day at a time, and I want to assure you that your involvement as a daughter and a caregiver is not over. You are still the most important person in your mother’s life. You are the one who knows her best and the one who will continue to advocate for her care. Even the most basic things you do for your mother will be helpful; for example, bringing her things to keep in her room such as photographs, keepsakes and a favorite blanket. Most of all, you can help your mother by keeping an open dialogue with her, answering any questions she may have, and continuing to encourage and support her.
Finally, I want to commend you for becoming part of a support group and encourage you to continue doing so. This is a wonderful place to share your experiences and to release pent-up emotions. Being able to let our feelings out often helps calm us and give us renewed strength to move on to tackle our own daily needs and those of our loved ones.
Dear Karen,
Great comments by the Alz Soc Worker, she's right on! As a person who assists with these decisions and transitions as my profession, I coach people through this process regularly. It is not something that comes easy for anyone you love and care about. My fortee is helping you sort things out so that you can make the best decision possible with the least trauma and the greatest peace of mind. That said let me give you some positives about your new life with your mom.
People with dementia need people who understand their disease process as well as people who care about their personal well-being. Being in a community will allow you to regain some of your mother/daughter dynamics because you are no longer bogged down with the day-to-day care. Your focus can now be on quality time with her rather than quantity time. She will appreciate every visit you make. You are and will always be her best advocate. You know her better than anyone else. You have extensive history together, let alone treasured moments in time that only the two of you have shared intimately. Those moments may continue to exist until the end. Treasure them as you have treasured her life in your home together.
The value of a support group is priceless in your acceptance and frustrations with the journey your mom's life is taking. It will help you maintain strength, courage and balance as you embark on this courageous path. Our feelings represent our innermost thoughts and concerns and expressing yours in an open forum will help you heal your repeated "scrapes" as they occur. It will bring you more peace and preparedness as you face her emmanent decline.
Remember to take time to enjoy some of your new found freedom with friends and family, it will help you distract somewhat from the huge change that has just transpired. In short, it will feel good to laugh again. Laughing is good medicine.
Remember when you get on the plane the overhead speech says 'take care of yourself first which allows you to help those around you.' i.e. take care of you so that you may continue to love and care for mom to the best of your ability. Without you, her life dynamic changes significantly.
God bless you along the path of this arduous journey!
EONE
Dear EONE,
First, my apologies for not responding sooner. My life seems more busy now with my mom in a nursing home. Therefore, haven't been diligent in checking my post.
What you wrote touched me deeply....thank you, thank you. How apropos your comments were posted on Valentine's Day. In reading The Alchemist by Paulo Coelho it says "there are no coincedences." Instead, to watch for "omens" or as I like to call them "signs". Your comments are a perfect example of the sign that an expression of love comes in many forms.
I'm taking it one day at a time. Rediscovering who Karen is. My life's been on hold for the past five years. Having a newfound freedom. Doing something as simple as going to the movies. Something I haven't done in a LONG time. Or getting together once a month with a girlfriend for lunch and just hang out with a friend. It feels good.
Your comments were comforting and helpful. I'm sure the people you work with have also benefited from you helping them process things.
Thank you, thank you, thank you.
Karen,
Bless you for taking time to reply to my supportive words to you, Lord knows, it was not necessary.
Each step on this journey together will change with your mom's capabilities. Keep up the good work of taking care of you. YOU ARE WORTH IT! Smell the roses everyday. When your mom recognizes people, shares memories, or maybe even just plays a game of checkers...revel in the moment, drinking up the quality when it comes your way, and know that when it's a bad day for mom, it's nothing to do with you and everything to do with her disease.
A few weeks back I cleaned house for one of my clients I have known for 20+ years. She's the kindess lady. She emphatically made a point to show me some spots I missed while cleaning. Knit picking, normally I would have simply taken it in stride. She forgot she pointed it out to me and every time I headed for the door, she remembered. Three times to be exact.
I had a difficult, strenuous week with another client and I guess my resistance was less than I anticipated. When she paid me with a check I told her it was important to me she know that I was there to help her. She kept pointing out the error, in frustration and thru my own tears, I tore up the check and told her services that day were free. She instantly reacted to my tears by returning to the sensitive Christian woman I had known for decades. She recognized my job well done and wrote the check being sure to schedule her next monthly cleaning (these are my check ups on her progress and guides on telling the family when it's time to consider alternate housing options.)
I guess the point of sharing this story is that there will be times when you are hurt and frustrated with your mom even during visits, just as I was with my client. Simply "walk away" and talk with a staff member. Therein you will find the courage and strength to go back in and know that it was her disease which hurt you, not the mother you so dearly love.
Keep up your courageous journey of love and share each moment you can knowing that it's all time well spent honoring a woman who lovingly raised you with the best she had to offer.
Continued blessings to you both,
Thanks so much for sharing your story with us Karen. It really can be so difficult when faced with this kind of decision. And it so true that YOU too, as your mom's caregiver, must adjust to the new scenario.
Give yourself time, but stick with those support groups. If you don't have one yet check around and find one - you do not have to do this alone. Sounds like you know this from the focus group experience. If you need some help finding a local support team, check with the AFA - Alzheimer's Foundation of America. You can find them and a few others on our Caregiver Resource page.
All the best, sue
Sue, thanks for your comments and information re:support groups.