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RainbowPainter Posted February 2009

Letting Go and Letting Others Help Care

Letting go and letting others care for my Mother has been a hard and difficult transition for me and my siblings, but we're trying.

After seeing to Mother's needs for two years and knowing of her "routine" and "desires", I had 'conditioned' myself into believing that I and ONLY I can care for her and see to her quality of life in a way that she was accustomed to living. But was I really?

I was so exhausted and run down by keeping watch over her and her every need of day-to-day living that I neglected to LIVE!

I had let myself go, mentally, emotionally, physically and yes, even at times spiritually.

Each day was becoming a "dread getting up" day, but I would, each morning, because I had to see that she got her medicines, dressed properly for the weather of the day, feed her the meals she can no longer prepare for herself and clean her house, pay her bills and shop for her needs and get her to her appointments, etc, etc.

Since placing her in an Assisted Living Facility, my routine has changed, I have changed, but Mother is still the same and that's the reality of the transition. I AM EXPERIENCING THE TRANSITION!, not Mother.

She gets her meals fed to her as also snacks and her medications through out the day and evening. She has her own bed with all her cherished photos of family members around her. She's entertained by the local singing groups in the communities and they do crafting and monthly parties for various reasons of the occasions.

Her laundry is done for her, she has her hair done regularly and she even gets to have worship services right there in the facility on a weekly basis.

She has visitors now, where as while living in her own home, visitors were rare due to the friends and neighbors hesitance in reacting with her since she didn't remember who they were and what relationship they had with one another. She was withdrawing from society and my Mother was a social butterfly in her days of living life to the fullest. She would be involved in everything that had an open door to help or fellowship. But those doors didn't open for her anymore, because she would feel confused and get flustered, embarrassed even, because she couldn't do the tasks that were needed of her.

Have we had any real issues of her care? Yes, I won't deny that there have been some issues that have come up and I would begin to panic and that old ego would come back to me, haunting me......"they can't care for her better than YOU!" which would get me on a guilt trip and in crying mode of the day. Let it all out, breathe again and focus on a solution. Let it go and let others care for Mother.

Then I would take a few moments, assess the situation and realize that with clear and calm communication and understanding, I and the person in charge, can better understand what is needed to correct the situation for Mother's need or routine of life in her new environment.

Mother is healthy and happy every day all day. Joyous to see us when we visit and take her out for her weekly milkshake treat or just a drive to the country for a short outing. Yes, I'm letting go and letting others so that I can LIVE and enjoy the life with Mother, again.

toadballet1 Jan 2010
Rainbow: It was so good for me to read your original post and update today. My Mom is in good mental health, but her physical health is on the decline. Each and every day I ponder the question, "what do I do next?" - when she is unable to care for herself even with our help.
Unfortunately, I am still stuck in that phase where I think she would be better off with me (even though she has expressed on many occasions that she does not want to live with family)
I am also a "planner" and just want to gather information for now so that at least I have the comfort of knowing that I have an alternative in place.
I, too, have noticed changes in myself: gained weight, neglected my health, have developed acid reflux (which I never had before.) But, I have gained more of a sense of balance - but the future still scares me. Like you experienced in the past, I do not even feel like myself anymore. Every decision I make has to factor in Mom's needs. (I do not resent this - it's just the way it is.)
Thanks again for your honest posts.

SecretSister Jan 2010
RainbowPainter, those are precious, healing thoughts!! Thank you:)

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RainbowPainter Jan 2010
It's been a year since I wrote this passage. As I reflect over the year and gather up the knowledge and lessons that have come to pass, I find myself at peace with the grief. Let me explain please.

I hold dearly the love and spirit of my Mother. But it took me all this time to understand that even though her mind is in another place, her spirit is what I am nurturing and tending to these days. For instance, I would get really un-nerved when I would go to visit her and she wouldn't remember me or my name. She will ask me where I live and who I am.I dealt with guilt and wallered in the pity of blame because she didn't remember her own daughter's name, much less her life nurturning and caring and loving me.

That was a rude and heart wrenching awakening. I had to get over the fact and accept the terms in which this disease lashes out at the ones that it touches most.......US, the family members, the daughters and sons, grandchildren, spouses. It touches US, not the person who lives with the disease.

So how did I come to terms with it? I came to terms with the challenges the only way I could.......nurturing her soul, her spirit. Since she is in a facility that cares for her physical well being and security and keeping her safe, from harms way, I found it my place to keep her spirit and soul thriving. It's working.

I've learned that those with dementia and Alzhiemer's disease still want to be just like everyone else even though they are insecure in the fact that they are not and become withdrawn and reserved in life.

For example, my Mother is notorious for responding with the same answer to people's questions of "How are you today?" Her reponse is always, "I'm healthy, wealthy and wise." She always gives that same answer to everyone that asks. Well, I went to visit her and asked her how she was and she responded with those very words, again. Then, almost in the same breath, she asks me, "How is your Mom doing?" I was taken by surprise, again, but gathered my composure and said, "She's healthy, wealthy and wise." Now I might have been feeding a bit of my bitterness there in her question and was I put in my place when she replied, "Oh good, she's just like me." That was when I came to realize, yes, she's just like you. Acceptance is a hard emotion to understand and live with some days, but I'm learning along the way that it's a much easier emotion to live with, when we let it in to heal our hearts.

God bless all those who come here searching for answers and who need a little comfort in their journey along the way.

SecretSister Aug 2009
Dear Rainbow, Just stopped by to see how things are going for you and your Mom?

EXPERT Carol Bradley Bursack, CDSGF May 2009
Rainbow, I love your post. Yes, it's us - the caregivers who know each little thing the care receivers want and how they want it done - who really have a transition to go through. We have to share the care. It's good for all, but it's hard, as well. We know what they want, darn it all! And we've done it so well. However, we gradually learn to let go and see the help as good for all. We become better caregivers because we get some rest. We get a break from it all, even though we are still on call day and night, but now when we visit it's not all work. We can be loving and helpful. You have a great deal of insight.

Take care,
Carol

RainbowPainter May 2009
Yes JulieQ, I understand exactly what you are saying. We have planned for Mom to be in the assisted living facility for approximately two years as that is when her benefit for this service will expire.

In the mean time, I'm renovating her home to better accommodate her needs should she, the Lord willing, come back home to live out her life here. So I'm using this time as a "respite" and rejuvenation period, as best as I can, but her living arrangement is still in need of my diligence as you mentioned of the meals and visitations. I'm still trying to understand why a facility for the elderly would feed those with sensitive taste and struggling to swallow kraut, broccoli and blackeyed peas with cornbread for lunch. Mom wouldn't touch it and to think of all the gas that will be passed eating this meal. wwhhheeewweeee.

I go twice a week and she's always happy to see anyone that comes to spend even a few minutes with her. Time is of no relevance to her now.

That's a wonderful idea of the guestbook and I'll be sure to use it when the time comes.

Blessings to you.

JulieQ May 2009
I had the reverse situation in that my 90-year old mother could no longer afford assisted care. She is now living with me and I am her full time caregiver. I think she is doing better with me as I fix her healthier meals with mostly fresh or homemade foods. My sibs come a few times a week which I need for my sanity but it's good for my mother to see them. We are all very diligent in playing games with her - cards, bingo - or doing puzzles or wordsearches to keep her mind active. If she is in front of the TV, she's asleep and then doesn't sleep well at night.

My mom was in assisted care for over four years and it served its purpose but it still required due diligence. One thing I will suggest that we did was to have a guest book in mom's room so visitors could sign in. She would often remember that she had a visitor, just not who it was. She would say, "Go check the book." :) Or we could check to see who came by and then ask her about the visit.

Micheleangel May 2009
Hello, thought I'd add that we just decided to get some help in our home for my Mom, she moved in with us about a month ago and we decided to get help come in probably every day for about 4 hours. I hope it will ease up things for me. I've been taking care of both parents for quite some time and my Dad is in a skilled nursing for a while. Sometimes you just need to stop and if you can get help I think and hope that it will save my sanity a bit. You think you can do it all but it's just so hard with your own family and every day life. Bless you all for being here, Michele

RainbowPainter May 2009
Ahhhhhh, but He does 195Austin, HE DOES! or we wouldn't be able to do what we do and still have a since of humor about life. But I do understand what you mean.

195Austin May 2009
I know it is hard to give it up to God we do need to do we alone can not change things-he has so many stuborn people like me to deal with it is a wonder he pays any attention to me at all at times.

mitzipinki Feb 2009
Rainbow, man at first when I was reading your thread, I thought I was reading my mom's story (minus the participation in events and getting along with her... sorry). I was so glad to hear that you set the boundary that I notoriously stand behind. You are right it is letting go. Its about our control issues and guilt.

I am so glad to see that things are working out now that you can let go. Its amazing that once we get past that dark hour(s) of misery in worrying or watching the negative behavior, how things can change for the better.

Way to go! I like your statement "Let it all out, breathe again and find a solution." When I could calm down breathe and let God, things worked out. When it was of my own doing where I was frantic and angry, etc.... things became so much harder. Thanks for being an example of how boundaries can work when you can get along with your mother. :)

Anne Feb 2009
Praise God you found blessing for your Mother and yourself. It's so wonderful when we find a good fit, and things work out. I am happy for you and your Mother.

We had FIL in a similiar, very beautiful place. But we were 270 miles away. Too far. And he didn't like the place, though I'd move there in a heartbeat, if needed. I used to love to visit there, my son play their grand piano, and eat in their wonderful dining room. It was awesome. But, he has dementia, and his apartment was too isolated. They had all the amenities, church, activities, and he had complete freedom. He could walk to the park across the street, come and go as he pleased, go visit family. But it wasn't home. He wanted his own home again (impossible, because he couldn't care for himself). He had many tough encounters there, and we got many phone calls. My husband made many emergency trips, until they asked him to find another place to live. They found him wandering down a dangerous street, where he'd been collecting boxes to "move," yet again. He was also hallucinating. Now he's in a Nursing Home, with alarms, so he can't wander. He is 89 and wants a job, a car, a wife, and more children. He wants a little house and garden. It is so sad. But we now have him 4 minutes away, in a different very beautiful place, and see him almost every day. We play games, and go for walks, and drives. He goes to a Men's lunch every week, and out to eat with others from the facility. He's involved in church there and other activities. He has his own place in a much smaller dining room, and lots of encouragement. He still dreams of working and a place of his own, but we no longer worry every minute. He's safe and loved and well cared for. And we check on him constantly. It's so much better now. We have been blessed!

We're still tired, though. His roommate is my Dad with Advanced Stage Alzheimer's. It's harder communicating with him, but necessary to have many Care givers looking after him. His needs are great, his resistance is strong, and his disease is progressively worsening. One more to go: my Mom in a too-big house downstate. Her relief, and hopefully ours, will be coming soon. (A long process.) I am so blessed to have so assistance, and a safe place for two very needy individuals. I feel guilty when I hear how many struggle at home trying to care for loved ones, and have little help, if any. How sad for them. It has to be terrible. You, dear caring individuals are my heroes.

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