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5/11/18 9:38 P

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What do you think your biggest challenge is as a caregiver?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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4/28/18 1:14 P

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It's hard for caregivers to take time to take care of themselves. Find something small you can do to improve your health this week. Take a five minute walk, get up and stretch, pick up healthy fruits/veggies for your snacks. . .big things come from little beginnings. You can do this.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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4/27/18 7:49 P

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Another week flown by. The cherries, plums, pears & magnolias are in full bloom, but freezes are in the forecast this weekend. Oh well.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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4/22/18 9:25 P

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So, just posted a new thread on stress. How do you deal with stress in your life?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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4/21/18 9:31 P

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NEWROSE, congrats on getting the house done, what a huge undertaking. That's my summer goal, to get my mom's house done and gone. What a burden will be lifted once that's done. How are you doing today?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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NEWROSE's Photo NEWROSE Posts: 2,198
4/20/18 11:39 P

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Today we moved the last of Mom's belongings out of her house. The cleaners will be in next week and then we will be ready to put it on the market. For her own peace of mind, I hope it sells quickly! She needs to move on and I would like to see her comfortable in new surroundings sooner than later.

Time to start again!


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4/20/18 11:20 P

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Happy birthday to your mom NEWROSE. 91, amazing. I'm so glad things went well, and your plan of one day at a time sounds like a good plan to me. Reminds me of Matthew 6:34
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

I hadn't really realized what comes before that saying. It is the summary of "25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well."

Wow. sure helps me put things into perspective. One day at a time is definitely the way to go. Thanks, NEWROSE, for reminding me. It's so easy to get sucked into the hassles of the day and the tyranny of the calendar, it's good to remember to just relax and deal with things as they come. Even though I know that in my head, it takes effort to convince my heart to go along with it!


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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NEWROSE's Photo NEWROSE Posts: 2,198
4/18/18 11:26 P

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Thank you for the encouragement! Today was Mom's 91st birthday. I spent the whole day with her and it went pretty well.
One day at a time! That's how I plan to deal with this.

Time to start again!


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4/16/18 10:50 P

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Welcome NEWROSE! Caregiving is such a juggling act, and there are no perfect answers. I went down to my mom's to bring her a meal, do the chores, and play cards with her to entertain her almost daily for over fifteen years. Then she started going downhill with dementia in her 90's, and I finally moved in with her full time for her last seven years. So, I am familiar with memory issues.

The best thing that ever happened to me was this group. I was crying myself to sleep most nights. I had my own business, my own family and home. I really thought taking care of mom would just be for a few months at most, and as it dragged on for months and then years, I was not prepared. I didn't know how to handle a dementia patient. I didn't know about finding ways to recharge my spirit, so I had mental energy available for caregiving. I didn't know that I needed to change my way of thinking, and what I didn't know was making life intolerable.

Then people here at Spark helped. The very first day I joined, a woman shared that my role had reversed, and I needed to step into my new role. My mother was treating me like a bad little girl, who never did anything right (the dementia talking--she was always the kindest, most loving and helpful mom before this.) I was back to sleeping in my childhood bed, being treated like a child, away from the life I had built, and I wasn't adjusting well. This fabulous Spark member explained that growing up, my mother's role was to make the necessary decisions to keep me safe and good health. She had done that job wonderfully, and while I might not have always wanted to take my medicine or follow her directions, it was for my best. Now, mom was the one needing taking care of, and it was my turn to decide what needed done. Financially, physically, emotionally, what would be best for mom? I needed to research what I could, ask for help when needed, make the best decision based on the available facts, do what needed done, and stop second guessing every decision. Like a corporate executive, you have to take the facts you have, make the best decisions you can, and move on. When the facts change, you can change the decision, but you have to just do the best you can and move on. There are no perfect answers, you just do the best you can. I am so thankful to that Spark person who urged me to see things different, to step into my new role with confidence, and just do what I could.

As it turned out, this was the most challenging, and most rewarding job of my life. I learned so much. I learned to treasure every moment. I learned what a blessing each stage of life was, and learned to appreciate the small things in each stage. It's easy to complain about the constant repetition when they can't retain information, until they lose even that ability, and sit silent. Oh, how good a rousing repetitive question would sound then! I learned how valuable it was to just be there, even when it seems like you're not doing as much good as you would have liked. Just to be there, to handle what you can, is so important. I'm so impressed that you have been able to help clear things out at your mom's house, that's not an easy job. My congratulations, that's such a huge hurdle to jump.

I know financially things can be very difficult. You might find it valuable to speak to an elder law attorney, that specializes in all these end-of-life issues. The one we spoke to here helped me so much. They are able to tell you how best to handle the disposition of assets, in order to not mess up Medicare/Medicaid assistance with nursing home care. There were things I hadn't thought of, like the importance of having beneficiaries set up on accounts & investments, the importance of a medical care power-of-attorney as well as financial power-of-attorney, so you can still handle the money & medical decisions if your mother's memory continues to decline, or she has a critical health issue pop up.

There will always be things you may deem necessary, that your mother may not like. It's sad, but a fact of life, just like when we were the children, and our parents made decisions for us we didn't like. We just have to take all the available options into consideration, and then decide which one fits the situation the best. The social worker gave one view on what to do with mom's money, and your mom has certainly given her view. There are financial advisors that specialize in eldercare, in my case the attorney & financial advisor worked together at the same time, making it easy to ask questions and get pertinent answers. The first visit was free, and what we paid for later in documents and such was worth every penny.

I also found spending time in prayer about the decisions very helpful. Just the act of praying about it helped me to quantify the problem; analyzing the issue in order to put it into words helped me clarify my thinking and my options. Often a possible solution would pop up by the time I was done, or I'd later hear a broadcast or read an article about the very issue I was having.

In any case, know you are not alone, we stand or have stood in your shoes. You are part of a very privileged, elite group, that have chosen to march into a difficult battlefield for the sake of our parent(s). I applaud the obvious care you are putting into these decisions. Good job!

As to finding a place to stay, now is the time to ask all your friends and acquaintances for experiences they may have had with the available local options for residential care. They may be able to point out leads on good places, and be able to steer you away from bad ones. Start visiting the places available. Check online for reviews, and start assembling a chart of options, with prices, any restrictions (some will only do certain kinds of care), and any reviews you or others have of the place.

Check into local businesses or individuals that do in-home care, with the same questions about prices, credentials, restrictions, etc. There may also be adult day-care available at a reasonable price. Which means your mom would be having people to socialize with during the day, meals, etc. taken care of, and you'd only need to deal with late afternoon and night care. So, you might be able to combine options. Perhaps a relative could provide a room for the night, someone else might be able to provide transportation to day-care during the week (some places have free transportation), perhaps someone else could handle afternoon mom-sitting, etc.

It works best when you can get a team of people to work with you, although for many that isn't an option. Talk to family members, see what everyone is able and willing to do. I can assure you, even just an hour a week, even an hour a month, is like gold when you've been caregiving all alone.

Let us know how things are progressing. I care.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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NEWROSE's Photo NEWROSE Posts: 2,198
4/16/18 10:23 P

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Thank you for mentioning Carol Howell! I was feeling lost and not sure where to start. I googled Let's Talk Dementia and found the Kindle edition for 99 cents. Reading it helped me imagine how I could have a conversation with my mother again. Even though I know she is not able to process new memories reliably, I have not really accepted it. When she forgets something that happened an hour ago, I still think if I just remind her of what happened, the memory will come back. I believe that she has been pretending to remember things when reminded by us,which is why we are all still trying to remind her.
When I was first advised to just change the subject instead of arguing or to keep things positive in tone, I couldn't even imagine doing that. I thought my mom would see through it and call me on it or get angry,but so far that has not been the case.
I just hope I can break all my bad habits and change my behavior.


Time to start again!


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NEWROSE's Photo NEWROSE Posts: 2,198
4/15/18 1:11 P

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Hello!
I'm new to the team and new to being a caregiver. A lot of the posts on other threads were not recent ones so I was unsure where to find you.
My mom has had "trouble with her memory" for quite some time but when I was working I wasn't around her enough to recognize how serious it was.
I retired last fall and now am working on doing what I can to help Mom. Her house is almost emptied out and we hope to put it on the market very soon. I had hoped we could keep her at home (or in someone's home) and find her whatever help she needed, but she is at the point where we are nervous about her being alone for more than a couple of hours. Unfortunately, her savings are dwindling rapidly as she is over 90. She doesn't want to part with her money now that there is so little left so finding a place to live or people to help her will be a challenge. When I met with a social worker and asked about how to manage this problem, her advice was to spend Mom's money on what she needed and just not tell her. It seems so wrong,because Mom already gets a little paranoid (thinks we want her dead so we can throw all her stuff away).
If any of you would be willing to share your real world experiences, I could use the feedback!
Thanks for reading!

Time to start again!


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ANGORA4's Photo ANGORA4 SparkPoints: (29,213)
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4/2/18 11:28 A

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Fabulous to hear of the progress in the house sale, that will be a big load off your mind. I'm hoping my mom's house sells this year as well.

It is hard when family members don't visit. I'm amazed how often I hear that people stay away because they want to remember their loved one "the way they were". It may be convenient for them, but it's hard on the parent. Even if the memory of the visit only lasts a few minutes, experts say the good chemicals released in the brain by the visit remain active for hours. So, it does do good to visit, even if the parent doesn't remember it. (Another excuse I hear often, "Why visit when they don't remember it anyway?")

Another part that no one seems to remember, is what a blessing it is to the caregiver. Just to have someone else care, someone else to step up to the plate and endure the difficulties, even for a short time, is a blessing. When my nephew would call my mom on the phone, she'd light up. It was amazing to see. She'd be bright and perky, and her entire demeanor would change. He had no clue how difficult life with her could be until he actually came for a week, and lived with her. I had some blessed time away to be with my own family, and he realized what I was really dealing with. It took him a long time to process that the grandma he remembered and the one he visited were so very different. What was so amazing was that he made the difficult choice. He made sure to call more often, realizing how important that was, and it was a blessing to me as much as anyone.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
3/21/18 8:05 A

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We finally got an offer on my mom's house. It was not quite the amount she wanted, but she accepted it. Now the buyers have to sell their house before the deal is done. It will be such a load off my mind! My mom is still trying to do her own bills, but lately she is late on one or forgets to pay it or thinks it is on auto-pay. I have straightened them out monthly. It is coming to the time when I will have to take over and have her bills sent to me so I can pay them from our joint account.

My sisters live 3 1/2 hours away. One has not been up to visit since October. The other came up for one day last month. My daughter is the only grandchild who visits regularly. I am told "They are busy with their children." Or "It is too far to drive." It is sad because my mom has given them a lot of nice things and still sends gifts for Christmas and other holidays. I feel sad that they are ungrateful and are choosing to avoid her.

Thanks for listening!

Roz

Dream big and pursue those dreams as often as you can.


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1/26/18 10:26 A

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So good to hear the update, Amanda. Sorry to hear about the loss of your mother-in-law.

Life after caregiving is full of challenges of its own, and I believe there is a real need here to both share what we've learned during caregiving, and share what is going on afterward. Things like closing out an estate, bank accounts, and the myriad of details you didn't expect. Not to mention the emotional rollercoaster as you try to transition into a new phase of life, especially for the full-time live-in caregivers that gave up their home and career to be a caregiver.

We'd love to hear what tips you've been hearing on the dementia program.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ALATONA's Photo ALATONA Posts: 998
1/25/18 2:39 P

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Hello Angora4! emoticon
It's funny.... I am no longer an active caregiver (my husband's mom passed away in March 2017), but I still FEEL the responsibility sometimes. I mean, I was a caregiver for almost 8 years! It's weird when it just stops. I still listen to a dementia-care podcast (Let's Talk Dementia by Carol Howell - what a sweet, knowledgeable, and encouraging lady!), and I try to encourage and support my friends who are caring for their elderly parents.

Back in December, I took my students to do Christmas recitals for the residents of the retirement home and the SNF where my mother-in-law lived. It was familiar, but it was not depressing. At the retirement home, I saw several residents who greeted me by name and told me that they missed my parents (in-law). It was very sweet.

I am still hanging on to Mom's old bank account; I have not paid a bill from that account in about 6 months, but I'm afraid that if I close it, a check or bill will come in her name and I'll be stuck. One of these days I need to just shut down the account, but not just yet.

Let's hear from another member! What's going on in your world?
~Amanda

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1/20/18 1:12 P

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How is everyone?



"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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1/4/18 7:15 P

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Sounds like a great way to spend New Year's Eve, and like your Mom is in a great place. I like to walk each day, but with temps in the freezer it makes it hard to stay out very long. The zumba video is a fabulous solution.




"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
1/2/18 10:27 A

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Happy 2018!
I started New Year's Eve playing Bingo at a BBQ place with my daughter, her husband and two of their friends. It was only 1 hour but we had fun. Kelcey won $25.00 in split the pot. Her friend won the other 1/2. Then I went to check in on my mom. I realized they were having their NYE party on 2nd floor. She was all decked out in a new outfit and was glad to see me. The activities volunteer was busy with the appetizers. They had door prizes and then ate pizza. Next was bingo. The CNA had to leave for a bit so I took over being the prize tray bearer. It was fun! I was home by 8:30. My husband went to bed at 11. I thought I could stay up, but fell asleep on the couch. I woke up at 12:15 and went to bed.

I bought a Country Zumba video for my stocking stuffer. I have used it twice now. Kelcey was over yesterday and did one song with me. I am working my way up to finish the first workout (so far I've done 4 of 6 songs). I feel a little sore so I will stay with 4 songs for now.
It has been so cold that I couldn't walk outside.

We start back at school tomorrow. I am going in today to put the labels on the new lockers. It will be a learning curve to keep fingers out of the locker doors and learn to shut not slam them!

Have a great day!

Roz

Dream big and pursue those dreams as often as you can.


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1/2/18 1:11 A

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So good to hear from you, we appreciate the update. It is amazing how fast time passes, my mom passed on seven years ago at Christmas. For some, it makes the holidays sad, when a loved one passes at a time when others are celebrating. But my mom loved Christmas, so in a way, it makes it more special for me, as I celebrate the love of the season, where we celebrate the hope of all mankind becoming flesh and growing and walking among us. It is a season of miracles, of love and hope, faith and joy. I choose to focus on the good this Christmas, and try to see the love, instead of the pain.

I envy you being able to visit your mom for Christmas. Most of my family is gone now, even the in-laws, and I would love another Christmas with all of them around the table again. It's sort of like the Dickens Christmas Carol, where the ghost of Christmas future shows the fireplace, with the empty crutch leaning against the fireplace, never to be used again. You still celebrate with the remaining family, but the empty chair reminds you of the one no longer there. Sort of bittersweet, the joy of the season & its love & magic, but the loss of Christmases past, with all the chairs filled. You just have to make new memories and move on, time flies so rapidly you need to treasure every moment.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
12/28/17 10:41 A

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Yesterday was the 4th anniversary of my MIL's death. I was her caregiver for about 1 year. She moved to a senior apartment and was pretty self sufficient. She still had a vehicle and we used it to get to the store and the pharmacy. She liked to do her own shopping until about 3 months before she passed. Then she gave me her list and I did her shopping. She was always grateful and pleasant to me. I really miss her!

My mom is now having O.T. and P.T. visits at her apt and a nurse helps her shower twice a week. She went to the E.R. too many times so they don't want to risk a fall or pneumonia. One of her meds even said it could cause chest pressure but when she mentioned it at a visit for her bladder infection, they called the ambulance to transport her to ER (the other side of the building). I too mom to buy gift cards to mail to her grand and great-grandkids. That was before the arctic freeze we have now. I took her to lunch at Perkins for Christmas Eve (her 71st birthday) and she got a free piece of pie for dessert. My daughter joined us a the end. We had Christmas at our house with just my daughter and her husband. My husband and I went to visit mom on Christmas Day.

Mom is having another sleep test next week. I am sure her doctor wants her to get back to using her C-pap.

Well, I am hoping 2018 is a great year. Merry Christmas.



Roz

Dream big and pursue those dreams as often as you can.


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12/4/17 10:01 P

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Another week, how the time flies. How is everyone?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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11/19/17 1:50 P

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Welcome to Eleni (sorry if I remembered the name wrong & misspelled it). This team was such a blessing to me when I started caregiving. This is the place I could come and get comfort & help on the bad days, and be able to help others as well. Caregiving is both the most challenging and most rewarding job I've ever done. I've learned so much, learned to appreciate every minute of life.

When I started caregiving, I was crying myself to sleep every night. I'd left the comfort of my own home, my own life, to come back into town and live with mom and take care of her. I'd left relative control of my life behind, to be once again treated like a child, and it was hard. Then I met this group, and others helped me to adjust my thinking. It wasn't the situation that was the problem, though it was admittedly difficult. The real problem was me. I had to adjust my thinking, stop reacting like a victim, and take control of my life again. I was choosing to be a caregiver, and I needed to make new boundaries, new ways of dealing with things. It was an eye-opener for sure, but once I could see the big picture, I could make better choices.

As I watched my mother decline, I was able to see how even simple things are blessings. To be able to go to the kitchen and make yourself a snack, to be able to dress yourself, to be able to follow the plot of a movie (if it ever had one), to be able to play a simple game, or get a joke, or recognize a friend--I never realized what blessings they were, until I watched my mom lose those abilities. To breathe on your own, see a sunrise, hear a child's laughter, feel another's hand in yours, and even use the toilet on your own. . .they are amazing blessings. Once I started seeing the good things, and being thankful for them--the flutter of butterfly wings, the scent of an old-fashioned moss rose, a car that started on a cold day, and a heater that worked. . .instead of seeing just the bad things, my life dramatically changed. I found happiness in countless little things, instead of when things 'going better'. It became a game, to see what blessings I could find--incredibly hard at first, but easier as time went by, until it became second nature. This is one of the greatest gifts caregiving has given me.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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11/13/17 10:50 A

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Wow, sure a lot going on Roz. Never had parsnip chips, how did they turn out? My boss loves kale chips, just lay out the leaves on a cookie sheet, drizzle a little olive oil over them, sprinkle with just a touch of salt, and then bake in the oven until crispy (she said it didn't take very long). Do the parsnip chips work the same way?

How great that your daughter goes over and cooks with grandma, that's special.

As to the guilt, I think we all want to just make things 'better', only no matter how much you do there is still something else that crops up. Like laundry and dishes, there is no 'done'. There's always one more dish, there's always one more caregiving chore. Eventually, you have to just do what you can, and make peace with that.

We'd all love for things to go back to 'normal', where we are free to live our own lives, knowing our parents are there to help out when needed. It's hard to put that illusion to rest, our minds may still think of that as normal, unless of course your parents were never supportive in the first place. But the new normal is that they need us, whether they realize it or not, whether they accept it or not. And some parents go down this final path kicking and screaming all the way, making life difficult for everyone. Others may be blessed with appreciative, compliant parents, and not realize how the stress of caregiving can be multiplied many times over with difficult parents.

I think the hardest things for me were stepping out of the 'obedient daughter' role, and into the caregiver role where I take more control; getting over the frustration of my efforts not only not being appreciated, but being yelled at; and the lack of methods to refuel my spirit, which was getting drained down to the dregs. It's hard to feel like the bad little girl, never doing enough to please the parent, never being good enough to deserve at least a little appreciation for all your efforts.

Once I started doing things to refresh my own spirit, even if it was in small time blocks, it helped immensely. Spiritually, emotionally and physically, I needed to take care of me. Once I was refreshed, it was easier to accept that my parent/daughter roles have changed, and I needed to decide what I could do in caregiving, and do that--while being a bit detached from all the drama. Once you don't need appreciation, or approval, but are doing what you know needs done regardless, you are amazingly free from a lot of the caregiver guilt. It made caregiving easier, because once free of the guilt and need for appreciation, you can do what needs done with a smile.

When life is full of angst and tension, it infects the others around you, breeding more tension. Once I let go of my expectations, took control of my caregiving, stepped into my new role with a new attitude, life changed dramatically. No, my circumstances hadn't changed one bit, but my reaction to it had changed. I'm with your husband here, sounds like you're doing what you can to help. I pray you find peace in your caregiving, you're carrying a heavy load. Kudos to you for all you do to help, and for passing on to the next generation a desire to help. That's an amazing success that few get to see. Hang in there, and keep us updated, we care.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
11/10/17 8:12 P

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A little update again. My mom had another angiogram and they put in three stents. They went in through her groin and her wrist. The day after surgery she was asking for the puff popcorn that is full of salt. She needs to lose 100 pounds! I think I have her finances straightened out to afford the nursing services and then she wants 4 tub baths per month. I told her if she gives up the Tuesday Adult Day Services trips that she could probably afford it (if they have time to give them where she lives).

My sister rearranged mom's bedroom so she could sleep in the hospital bed in there. Unfortunately, my sister didn't know she couldn't block the windows with furniture...they have to be able to get in to help her if there is a fire. So, I moved things around again. She slept in the bed for 3 hours and decided it wasn't going to work so soon after her surgery.
My daughter and her husband moved back to town recently. My daughter went to cook a batch of chili with Grandma this afternoon.

I am off school today so I did some grocery shopping and picked up a couple of things mom needed. I had found a recipe for parsnip chips so I bought a bag of parsnips for her to be able to bake a crunchy snack.

As I was leaving she told me she had a prescription ready at the pharmacy. They deliver it so I didn't offer to pick it up.

I would love to visit her just once without feeling guilty that I don't do enough. My husband says I do more than I should.



Roz

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10/20/17 9:10 P

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Thanks for the update, it's good to hear from you. It's hard enough trying to do all that paperwork when it's for yourself. Kudos to you for helping mom deal with things she let lapse. For many people, the parent's pile of unpaid bills is often the first clue that their parents may not be taking care of themselves anymore. Often, the parents still feel in control, even though they are not taking care of things as they once did, leaving everyone in an awkward situation. Sounds like you have fallen right into this scenario, and it can be difficult.

Does anyone have any good ideas on how to deal with a parent who intends to retain control of things, but is not really doing what needs done? I know this has come up in the past with others, perhaps they can give some ideas?

I'm so glad to hear that you and hubby will be getting some time together, for caregivers, that can be something that dwindles down to nothing if we're not careful. And happy to hear that sis will be coming up as well, hopefully to help. It's such a blessing when you have a support team to lean on.

Caregiving is the most worthwhile thing I've ever done, but also the most challenging. It can be so frustrating at times, and you need ways to release the tension and recharge your own batteries.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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10/20/17 8:21 P

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How are things for everyone else? TGIF!

I spent 6 hours trying to arrange my mom's bank accounts so we can close the ones she left open in the town she used to live in. I was on hold for 40 min with social security because she couldn't remember her password and they locked her out. The I had to get the house she still owns insured again because she let it lapse on Oct 1. I got a quote and then she wanted to lower the coverage to try and save money. She has a cell phone that my mom set up and an emergency button. She knows nothing about either. I finally learned that her cell phone is a pay as you go, but they take money out of her debit card each month. Trying to change that account I ended up finally giving up. I told her we would try again next week. I had created file folders for each company. She chooses not to use them, but instead piles the paperwork up on the table. Oh yes, I also had to get a payment to her cable company to avoid it being shut off. Ugh! I am going out of town for a banquet for a club my husband and I belong to. She did schedule the next stents to be done in November. I was able to request the day off. My youngest sister is also coming up to be here.

Roz

Dream big and pursue those dreams as often as you can.


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10/7/17 3:23 P

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Just wonderin': We're supposed to have over a thousand members, and I know how much we caregivers need support, and a place to just be ourselves. I know how much this team has meant to me in the past. So. . .where is everyone?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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10/5/17 10:52 A

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Wow, that is a lot on your plate to deal with, especially with everything coming on the burial day-- and it's hard when our loved ones make choices we wouldn't make, like in the untreated blockage. I understand it from both sides, I had to make hard choices for my mom when I cared for her, and I would probably make very different choices than my son, if it was me being cared for. I have a friend with vastly different choices than her family that is caring for her, but they eventually had to choose what they thought was best for everyone. It's so hard.

It is your mom's life, and I guess she's already living with the consequences of her choices. Bless you for doing what you can, and putting up with the difficulties.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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10/5/17 7:33 A

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Thank you. It just kept raining with more issues. My mom called the ambulance for herself on Monday and they took her to ER with chest pains. She had taken a nitro and they were concerned about all the fluid in her legs. She was admitted to ICU and they checked her stents. She was released on Tuesday (the day of my dad's burial) and I had to have her call another resident from her apartment to take her home because I was out of town. Mom says she has a blockage on the right side, but she chose not to have it repaired on Tuesday. I need to call her doctor to get the full story.

Roz

Dream big and pursue those dreams as often as you can.


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10/4/17 8:42 P

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I'm so sorry to hear about your dad, my sincerest condolences. It's odd, even when you've been caregiving for a long time, and know your parent is going to pass, it still can be difficult. I cared for my mom full-time for seven years, and watched her steadily decline for that time. By the time she passed, she was only a shell of the bright, vibrant, kind mom that I grew up with. I grieved as she descended through the phases of dementia, and I thought when she entered the last stages that I would be done grieving. I was wrong. It hit me at the oddest moments, suddenly something would remind me of mom, and she was gone.

Now, dealing with your mom is on your mind as well, I'm so proud of you for doing what you can for your parents. Caregiving is definitely the most challenging thing I've ever done, but in the long run the most rewarding. Not because you get positive feedback from the ones you are caring for, it's often quite the opposite. They can be a challenging handful at times, frustrating and difficult. But doing what needs done, as best as we can (it's never perfect, just do what you can), brings a new level of insight into your life. You grow stronger from doing what needs done, even when it's hard. You learn to appreciate the little things in life that you took for granted before. I learned so much during my caregiving years, that I use now in my daily life.

Hang in there, I know this is hard. I pray you'll find sources of help and insight that will make this journey easier for you, and pray for comfort in your time of loss.



"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
10/1/17 9:45 P

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Hi everyone,
Well, we just lost my dad last week. He was only 79 yrs old. COPD and diabetes along with high blood pressure. It was kind of sudden though. We had the funeral on Saturday and his burial is Tuesday. I miss him a lot.

That same day, I got a call from the adult day services my mom goes to. They wanted to tell me she needed new leg wraps, new pants that would go over the leg wraps and they think she needs more care. I talked to them on Friday and explained what I had been working on with my mom. I have already had her evaluated for nursing care again. I am confused as to why they said they would make recommendations, but then only told me what mom wanted to pay for...which isn't all the care she needs. I can't continue doing her leg wraps. She has her house for sale, but no one coming to look at it. We are having an open house in a couple of weeks. The hard part is that she doesn't qualify for services as long as she owns the house and she is too "tight" with her money to pay for the care. Well, I ordered the leg wraps and got her jogging pants. I just need to get the schedule for her cares and help her get her money situated to pay for it again.

Roz

Dream big and pursue those dreams as often as you can.


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9/2/17 12:29 A

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Quiet day, expecting rain. That's a good thing here (not elsewhere, I realize), as we're too dry.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/31/17 5:03 A

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I wasn't prepared for the steps after caregiving, I guess I thought life would just bounce back to 'normal'. But so many things go undone when you are caregiving, and if you didn't take care of yourself along the way (which most of us don't), there are new issues to deal with. Don't get me wrong, caregiving was both the hardest, and at the same time, most rewarding thing I've ever done. It changed my life for the better, gave me a whole new outlook on life, let me see the miracle of each day that I'd never appreciated before. But, it leaves you with a lot of baggage to deal with later, and I'm thankful for this group being here, as we go through the next phase. Annie, you've always been such a blessing to me here, thank you, thank you.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/25/17 10:50 A

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I can't tell you how much Judy and this team meant to me during the really hard years of caregiving. You guys are awesome. Someone to talk to who understood. So glad I found this team!

And yes, Judy, I am trying (without much success) to downsize. I dread to think of someone else inheriting generations of stuff in this house. I have given some family treasure to those who I think will enjoy them. I set things aside to sell but haven't done it yet. Limited mobility makes everything harder. Not complaining. Thanking God for every day I have and trying to live it well.

Edited by: ANNIESADVENTURE at: 8/25/2017 (10:53)



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8/20/17 1:20 P

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Hope you all have at least a little time to recoup today, and recharge your batteries. What is it that prepares you to take on another day?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/19/17 3:45 P

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Silly Saturday, do something fun today. I think for my silly I'm going to go out and garden in the rain, like a kid playing in the puddles from days gone by.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/17/17 2:07 P

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Thoughtful Thursday, I'm taking time to think about my blessings today. We have so many that we forget about them. I I have access to a computer, can see the computer screen, I know how to use it, and when my mind wants to move my hand, the hand moves and types real words (usually). I have a chair to sit on, I have a roof over my head. I have safe water to drink, and a cup to put it in. I have a fan to make a gentle breeze to keep me comfortable. I have electricity for it to run. . .blessings.

I never realized this, until I watched dementia steal these things from my mother. She couldn't remember how to do things she'd done her entire life. She couldn't figure out how to dress herself, or how to get a cup of water. Even games made for toddlers were too challenging. Those things I took as detriments to my life, having to play kids' games, to clean up messes, to wash interminable loads of laundry and endless dishes. . .they were all blessings, because I could still do them.

I knew where the games were found, I could get up and choose one, and set it up. I could read and understand the instructions, and follow them calmly. I could gather up soiled laundry, walk to the washing machine, another blessing, and put the laundry in, and set the timer and let it wash. No wringer to manage, no water to be hauled and heated, no washboard necessary. I've done all those things in my time, and I know that they, too, are blessings.

Isn't it amazing that hiding in the tedium of everyday life, are countless blessings we've been missing, things to be thankful for. Those we are caring for won't be here forever. Give them an extra hug today, they are also a blessing, and one that will pass from our grasp all too soon.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/16/17 11:55 A

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I think of this as Wacky Wednesday, a day to do some small little thing just for fun, something silly, to counteract all the difficulty and drama that can fill our lives. What do you do to brighten the day?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/13/17 8:07 P

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Welcome to spectacular, serene, Sunday. We all need a little time, even a few minutes, to recoup and recover. Stop in and let us know how you recharge your spirit.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/8/17 1:23 P

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This team has been a lifeline, a place to unload the day's burdens, get help for the coming day, and join friends in our journey to wellness. How's your journey going?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/6/17 12:39 A

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Time to hit the hay, but wanted to check in and wish all of you a super Sunday. Cool here today, just lovely for a summer day, more of the same predicted for the next day or so, woo hoo! How's the weather out your way?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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8/4/17 12:37 A

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Hello! I did write another thread with my story, and some tips for those dealing with dementia patients. I took care of my mom full time in her home for her last seven years, then did the driving for my MIL's medical visits from the nursing home to the doctor/therapists, so I can appreciate the toll it can take physically. Fortunately, my mother-in-law was light enough to manage weight-wise, but it's hard to support them and get them safely in and out of the car. Both my mom and MIL are gone now, but I still appreciate this group and everyone's help in getting me through. I don't think non-caregivers can quite appreciate the changes that caregiving makes in your life, and this group has been so helpful.

There are so many adjustments to make after they pass, paperwork, estate taxes, final income tax forms, closing accounts, changing mail, notifying friends and relatives, downsizing, and all the emotional changes as well. And with the passing of the last parent, you may suddenly become the elder of the family, the keeper of the family lore, perhaps the one that now keeps the family get-togethers going at holidays. Now, when the family gathers at grandma's house, it may be your house they are talking about, and that's plain just beyond weird. I still feel like a teenager on the inside, how did I get to be the elder generation?

Now, we're trying to downsize as well, so the children won't have to go through all this stuff when we pass. Anyone else in downsizing mode?


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ALATONA's Photo ALATONA Posts: 998
8/4/17 12:10 A

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Welcome back, Angora4. Memories are tough; my husband has been coping with them big time since his parents' birthdays just passed (July 11 & 12).

We have almost finished settling Mom's affairs. I need to talk to someone about whether even should file tax returns.... I'm hoping it will not be necessary.

Mom (my husband's mom, actually) died in March 2017. She was 84. We took care of her for over 7 years while she lived in a retirement home near our house (independent living), but she lost her Independence and entered an SNF in October 2016. Downsizing from the apartment to the SNF bed was a chore, as was driving 25 minutes each way to visit her or pick her up for medical appointments outside the facility. It was hard to deal with her being wheelchair-bound, and I overexerted my back and shoulders transporting her during the final weeks. I had surgery in June 2017 (almost 7 weeks ago), and my husband and I agree that I could not have done it while Mom was still living. Hubby will be having surgery this coming December. We're both trying to take better care of ourselves.

I'm not actively caregiving anymore, but I intend to stay active in this group. My own parents are aging well so far... they're in their early 60s and recently retired. My 3yo misses his Grandma and still talks about her frequently. She was a big part of his early life, and he was a great source of joy to her in her final days.

Who else wants to share??
~Amanda
ALATONA

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8/3/17 4:51 P

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I've been AWOL a long time, I'd love for everyone to stop in and let me know how things are going for you. I'm in the process of going through mom's house and getting it ready for sale. Amazing how those memories keep popping up.


"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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7/2/17 10:24 P

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Hello Roz! That is awesome that you were able to do some zumba! I love zumba myself, and I need to get back on the ball. I havent been around for a few weeks, due to caregiving and work. I'm still trying to figure out how to pencil in some me time! ;0)

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6/27/17 11:29 A

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Here it is summer and our busy time of the year. My mom had an angiogram and then a stent put in two weeks ago. She starts cardiac rehab on Thursday. There was a mix up with the billing for the nursing service where mom lives so she gave that up the end of May. I was able to contact a young gal I knew and ask if she could help with mom's morning care. She gladly helps 2-4 days a week. I do the other days. We are both going out of town this weekend so I asked another friend to help out and she agreed. I have two months to figure out what to do when school starts again. It is challenging to leave my house 40 min early and drive to town to help mom. My husband feels mom should use her IRA money to pay for nursing services. We put mom's house up for sale after we cleaned it out this spring. The realtor finally had someone look at it this week. (Mom listed it about $50,000 more than the market analysis, but we convinced her to lower the price now.) I pray that we can get that sold before the winter heating season.

As you say, one day at a time.

I have been billed for Amazon Prime since my daughter used my card to buy something. I thought I would see if there were any Zumba videos I could try. I did one for 15 min today. It was great exercise. I will have to do it again tomorrow!

Have a great day!

Roz

Dream big and pursue those dreams as often as you can.


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6/8/17 1:24 P

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The last few months have been difficult, and caregiving really adds to my stress. But for the past 2 days, things have been ok, so I'm taking things one day at a time.

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2/12/17 3:52 P

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We checked out all the funeral home stuff a few years ago, before my father-in-law died. He was a WW2. Veteran, so he had planned to be buried in the Florida National Cemetery. It's about a four-hour drive from our city to Ocala, where the funeral home is, then another 40 minutes to the cemetery. Mom and Dad did not want cremation.

To transfer the plan, we would have had to use a funeral home in a town about 3 hours north of us, and the nearest national cemetery would still be an hour away from our house. We kept the FL plan, and it worked out fine when Dad died. My husband and I both have extended family and friends in FL still, and it was not too hard to work out the details, even though a local funeral home had to handle the remains initially and transport the body to the FL funeral home.

With regard to your mom's money, if she wants to give some to kids & grandkids, do it now. There s a 7-year look-back period; Medicaid can determine that certain large sums of money should have been appropriated for care expenses when they might have been given to family members. In our case, Mom + Dad gave my husband and me about $16k, and we kept it in a separate bank account so it could grow a little and so it would be easy to account for if the unfortunate circumstance came about and we had to use the money for their care. We are well past the look-back period now, so that money is all ours and cannot be appropriated by the government.

Edited by: ALATONA at: 2/12/2017 (16:00)
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2/7/17 7:15 A

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Alatona, check and see if that prepaid package is transferable, a lot are. When I did my prepaid funeral the other day, I got a paper stating it was irrevocable so the nursing home could not claim it. Until she applies for Medicaid she can spend her money however she wants. I think we are looking at placement within the next couple of years depending on how she does at home.

She had been in a nursing home for rehab before I brought her home and I am pretty sure her doctor will help me with placement, but I will have to check on availability.

I wonder if assets retained vary from state to state. Here, she can have up to $2000 in assets but that is all. Her house is sold as well as her car so the only thing we have left are some CDs and her bank accounts. She is thinking about leaving money to the grandchildren now so she can enjoy seeing them get something. She had a small whole life insurance policy that she has paid in to equal the maximum benefit so she will probably cash that in also.

Such a shame they work all their lives and have to give everything up to pay for their care.

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ALATONA's Photo ALATONA Posts: 998
2/5/17 12:19 A

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Fatcat, you must be planning to apply for Medicaid. We are in the midst of that with my mother-in-law. Her application has been submitted, and she is"pending".

Mom has a prepaid funeral plan that she bought back in the 1990s. It is for a funeral home in FL, and now we have her living in GA. Oh well. We did our homework and know how to handle things when the time comes. Face value on it is about $2k, I think.

We are being allowed to keep some stock of Mom's that is worth about $4k; apparently she is allowed to reserve up to $10k of assets for burial expenses. I hope you found a prepaid plan that is under the threshold. The nursing home financial counselor was SUPER helpful with our Medicaid application process.

Have you visited any NH facilities in your area? Many actually have a wait list to get in.

Blessings to you all! Your loved ones are blessed to have you!

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FATCAT216's Photo FATCAT216 SparkPoints: (8,350)
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2/3/17 8:21 A

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Meeting with the funeral home today for pre-arrangement planning. I know it is only a matter of time before I will have to place her in a nursing home as she is getting harder and harder to deal with in my home. When she goes there, it won't take long for all her assets to be gone in payment to them and I want to be sure we have enough money for her funeral. I can't believe life insurance is considered an asset but they take everything. She just cannot comprehend anything we try to explain to her on finances so it is difficult, as she thinks I am living high on her dime .....so not the case.

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WALKIN4JEANIE's Photo WALKIN4JEANIE Posts: 888
1/16/17 2:04 P

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Doctor's visit went very well. Her blood pressure went way down after they gave her a sedative which proved to the doctor that she suffers from "white coat" syndrome. (She is bipolar and has anxiety attacks as well.)

I am trying to get her to come here for a couple of weeks in February. She is 80 years old and has always wanted to visit the Biltmore. I have a season pass. I told her that I would take a day off and we would go just the two of us. I think I have her talked into it.

I really think that she needs to get out of that house. She is just so lonely. I live in a lively neighborhood that would welcome her with open arms.

I am sorry that your mother was disappointed. I know what you mean about the finances. I am not sure when to take a look at that, either.

If we couldn't laugh we would all go insane! - Jimmy Buffett


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ROZIGNAL's Photo ROZIGNAL Posts: 1,093
1/16/17 10:20 A

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How did the doctor visit go? I hope your mom's bp is better.
I am waiting for the repairman to come today to fix our water heater. We have in floor heat and the water heater quit yesterday when I was washing dishes. A repairman came yesterday but wasn't sure of the problem. We have a propane one so it is probably the igniter or something in the propane line.

After that gets fixed I am planning to get mom some sugar free Cherry Berry desert. My younger sister was at a friend's house only 1 1/2 hrs away and decided to go shopping instead of visiting my mom. My sister's life is pretty chaotic, so I don't blame her, but I feel bad that I got mom's hopes up when I told her she might come up. My other sister hasn't been up to see mom since we moved her here in July. We have been concentrating on getting mom's stuff sorted and her house ready to sell. Well, we may just have to speed up that process as mom's budget is eating through her savings. What did it was her gifts of money to grandchildren at Christmas. I really wish she had consulted me. I have power of attorney and I'm supposed to give her a financial update. She has also been changing renter's insurance and auto insurance on the vehicle we are trying to sell. I don't know when it will be necessary to take control of her checkbook and just pay the bills and give her spending money.
Well, have a good day everyone!

Roz

Dream big and pursue those dreams as often as you can.


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