Grandma was admitted into the hospital from an assisted living facility, her main condition was listed as failure to thrive. Now I am questioning the decision I made over a year ago to move my grandmother into my home. At the time, I knew it was huge and I wondered if I could truly handle it. I decided I could, and unfortunately I failed to take into consideration the impact it would have on my children. Grandma adores my son but only tolerates my daughter. My daughter has been subjected to unfair favoritism and she is fully aware of it. I am very angry right now. That is such an understatement at best.
I know all the sacrifices I have made and I did it willingly at the time, but things have changed. I look at the state of my life and the quality of my children's lives, and I question my decision. I want to 'undo' our living arrangement and get back on the track of being the best mom I can be, which I've recently redefined. There was a time that I thought as a role model that meant taking care of my grandma in my home with my children helping along the way. It seemed like the only right thing to do, but now I'm not so sure. Today it seems more like we are all hostages because grandma didn't want to acknowledge her abilities declining and she wanted to stay in her home as long as she could. The truth is, she stayed too long and refused to plan for the time when she couldn't.
Now, I can't help but ask myself why I continue to take responsibility for the choices she made, rather refused to make year after year. The truth is, the children and I have done a remarkable job with making her comfortable and happy in a life she would NEVER have chosen for herself. The catch is that now I've noticed that the three of us are no longer thriving, but she is. Is it worth it? I find myself in a quagmire of family values; priorities vs. loyalties. Honestly, I do not know what I am going to do to change the current situation. But, because of my experience I have become very proactive and set up long term care plans for myself so I never put my children through a dilemma of this sort. However, I'm not sure that means very much to them at this point.
Got Mom and Dad's taxes done yesterday as well. Went to the Probate Court to ask questions, because their first year's accounting is due soon. As Guardian/Conservator, do we pay ourselves a fiduciary fee? What's fair? I've worked my tail off trying to help them over the last year, and sacrificed my own family, home, time, and interests doing it. In return, I got complaints and criticism from Mom and uninvolved sister. How thankful is that? Still, I just keep helping Mom. Compassion, duty, pity, and service calls. I feel sorry for her, but struggle with the sympathy part at times. She is not very nice, but absolutely needs help.
Can't wait to see my Dad. He is stuck in the Nursing Home with Advanced Stage Alzheimer's. He is doing better there than with his wife, and needed full-time assistance. We miss visiting him when I have to go downstate to care for Mom. We enjoy serving him, and helping him with his needs. Can't explain the difference, but it is as different as night and day. Strange...
We are living in reaction mode. One catastrophe after another. Weary in the battle, and needing a break!
You have so much wisdom to share. Keep checking in.
Carol
As for Mom, she is better today after a new script arrived yesterday. But the doc said a problem with lymph node next to her lung and PET Scan Thursday prior to surgery. My husband bought me a beautiful van yesterday for my birthday. That should be a blessing for all the upcoming miles we have to travel. Some blessings in the midst of battle. A huge cold sore popped out under my nose yesterday, but it is already healing, and there's been so much loving support - how can I complain? Thanks for your kind words. My wisdom comes from above
Carol
Hey- has anybody seen those guys with the snuggly jackets?
OK Jamiea, I have no comparison to you. 750 miles is farther away, and you're right. It is a big deal. What to do? What to do? I visit that place often... But the answers don't magically appear. What's wrong with this picture? Aren't we all supposed to live happily ever after. I think everyone is waiting on us to make all the decisions. Except for the persons who should have made them long ago. They don't know what to do, either. I don't vote for a root canal or a poke in the eye with a sharp object. How about a trip to Hawaii? Sounds better to me.
Can you ask Grandma, since she knows so much, what she thinks is the best solution?
Anne, you made my day already! We all need your humor, because humor - even dark humor - is often all that gets us through.
The sheer logistical tasks of emptying homes (I did three) is a nightmare, and I was fortuante that they weren't homes of 50 years. The exhaustion, the feeling of powerlessness, the confusion, the guilt, the decisions - it's all so hard. Without some sense of spirituality, I'd truly have been at the head of the line. Now, I'm, er, well just in line: )
Thank you all for being who you are.
Carol
(Well...except for an ex-boyfriend or three!)
I just have learned to breathe and make my way to the room I sleep in (notice I didn't say my room?). There are MANY stressful days and yes, depression seems to loom around the corner on many days. I am learning to write poetry specifically AD related and my current feelings. That seems to help and Thank the Good Lord for computers and the web! LOL It is my saving grace.
Anyway, I will start chatting with you ladies if you don't mind.?
I can add a few lighthearted stories just like yours and you can help me by just being there and writing your stories.
I have decided that my life as I knew it is now "on hold" and I will pick it back up when the finality of this dreaded disease happens.
Thanks for the ear!
Sharon
Jamie
Naus, thanks for your message! :) Jameia, thanks for the humor! Hope you ladies have a wonderful day!
Hey Nauseated - About what to do with the house --I am thinking lease with option to buy / owner financing possible under acceptable circumstances. It may not be fast - but might be better than giving the house away, or having renters trash it, or having a property management company $$$ you to death, er... debt (whichever it is that they do.) Would certainly need solid contracts etc... I'll let you know after more due diligence.
Mom on the other hand is so wicked she and I couldn't be left in a room together for five minutes (NPD is how someone diagnosed behavior). I have provided for them in ways as an only child that I could.
I have made sure their medical needs were met on whatever level was necessary (literally). I provided care when I had to work (altho another story unto itself). I also got them the best assisted living facility (elegant and caregivers I treasure) to take care of their daily needs to live as normal as possible with their furniture and treasures.
For myself, I made a tough choice, but one that I can live with. Anne... my heart is with you and I honestly don't know how you do it (you get what I mean). To the rest of you I will quote others on this board "you are the real heroes".
Do not feel guilty because of what you choose. You have a family and you only get that one time in this lifetime. You cannot split yourself and expect to do 100% for each while divided however many ways.
Seek wise counsel. Talk with your husband first. Go from there. Investigate your choices and go meet staff, etc. When I contacted the assisted living facility I was in, the first question I was asked by the director was "It is important for your dad to keep his routine, bring his pills and we will provide him dinner at his normal time. Is this okay?"
Love... no easy answer. In my book its all about God's provisions and listening. For others, well... don't feel the guilt.
Carol
Jamie, I am behind in reading posts, but yes, let us know how it goes with the house issue, your story could help the rest of us. I am not sure yet what to do with the house. I just know, I need to try to keep him from losing it, somehow. I think eventually it will all come to me, but one thing at a time. For now, the house is still intact, have friends checking on it, and maintaining yard.
Big caregiver hugs to you all!
This is my first post and I have enjoyed reading (but also saddened by) your events of the past month and a half.
I have been caring for my father in my home for almost 4 years now but just became conservator/guardian last May due to his 2nd stage dementia. When my youngest went off to college, I had moved from southern California to northern Idaho so that I could live in the country, raise chickens, grow veggies, and live out my "country girl" dream. My father joined me 2 months later and so has curtailed a lot of what I thought I would be living. I didn't know the extent of his disability because he had been living with my sister who "was clueless". When he couldn't figure out how to make coffee and ate NOTHING unless I set it in front of him, I began to worry.
For the first couple of years I continued to work as a registered nurse but as we work 12 hour shifts, leaving him home stressed me a great deal. Once, when I was working, he bought a truck and had it delivered to the house. When he called 911 to alert them that the astronauts were in trouble in space, I knew I couldn't leave him home alone anymore.
Because he does not like strangers of any sort in the house, and because I don't want them in my house either, I opted to become his paid care giver this year. It is by far, less expensive than assisted living or a nursing home and because I AM a nurse, I feel qualified to provide good care for him. My mother (who is still married to him but chooses not to live with him) is angry at me for accepting money from his estate. But I won't apologize for it. I'm not rich; I need an income and I am providing a service that is a better alternative (at this moment). In addition, my life has been put on hold for 4 years now. I used to dance, enjoyed wine tastings, gardening, etc. but rarely get out. It has only been since the court made me legal guardian that I began to consider myself a care giver and have adopted a new paradigm, one that involves taking care of myself as well.
I have taken a lot of classes on aging and dementia, started a blog and a newsletter, have signed up for respite care so that I can get a break once a week, at least.
It's still VERY tiring, oft-times lonely and I'm not sure how long I'll be able to do this. But.....as you have all said, we all have to make choices that are best for all concerned, and we cannot feel guilty about those choices we do make, because we are making them with a loving heart.
Shelley
Caregiving is often lonely and isolatiing. Please keep checking in.
Carol
I vent and she makes suggestions for action.
My mom and I took care of my dad after his stroke for 7 years, then he fell- hit his head- and died 14 hours later. That same year mom was diagnosed with Alzheimer's.
Its been 12yrs so far and now her care is a little easier. There was definitely some rough patches. I am the kind of person who doesn't like to ask for help, so it took some doing for God to put me in a place where I was ready to ask for help.
A while back I called the Alzheimer's National Association, and asked for an Elderlaw attorney they would recommend in my area, and he has helped with the legal side of things.