Tidbits – Family Moments

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Family MomentsThe following are many wonderful tidbits I receive from families and caregivers. If you have found a "nugget" please email me and I will pass it on. Thank you to all who spread the joy!


My father now wears a Foley catheter. It must be changed monthly and since he is getting worse and does not understand why they are doing this to him. It is painful to him to have it changed. As a result, he is having melt downs. If he does not cooperate, they will have to sedate him. Needless to say this is very upsetting to see my Dad get so angry. He reached for my neck and was kicking my sister. So sad…..we just gave up and said we’d try next week.

Do you have any helpful info to help him through this process?

Marie

I am not an advocate for medications but in this situation if he doesn’t see it or feel it… It doesn’t exist. And we want him to Not feel this experience. Medications may be the best here.

That is a recommendation but only u hold the truth.

Jolene

Once again, thank you….this makes complete sense.

God bless.

Marie


The most important step is to identify which family member will be the “key” person in managing day to day financial needs.

The best scenario is to have them as a joint owner on their accounts. This enables checks to be written and bills to be paid. In every stage of what is to come, even death. If a person is an agent or POA that “solution” is temporary and dies with the owner of the account.

There are so many different situations in each family, but in the ideal situation everyone gets along and agrees with one person to be that “key” person. If a family insists that 2 or more people are required it becomes cumbersome when every transaction requires more than one signature.

Also is important to have the same person be the power of attorney. As time goes on this would be important to open and close accounts for Mom or Dad.

Banking is a very private matter and many times a parent is uneasy sharing that information with their children so it is important early in their stages of the disease that they know and understand that it is for their best interests to have help. I have found sometimes that to open a separate account with minimum funds to give Mom or Dad the independence they need to feel “in charge”. My Mom really just likes having a checkbook journal with a balance in it so she can see that she “has money’. I am located in a rural area and feel that most of my customers are very conservative and feel the need to know they have funds to pay their bills. Even if it is a bogus number it gives them a comfort zone. I deal with so many customers that “scammers” have invaded their lives and have “played the lottery winner” letter scam and have convinced customers to give them their account numbers to deposit money into. Families don’t realize what is happening until money is lost. That is why it is so important to have limited funds available if there is a known issue with Mom or Dad.

So I have rambled on here but to summarize I would say…

  1. Communication with family members
  2. Power of Attorney determined
  3. Combine accounts. So many times a person will have several checking and savings accounts and certificates of deposits. It is so confusing and at this point unnecessary.
  4. Open small account to give Mom or Dad their continued independence.
  5. Many things can be done such as trusts, guardianships etc to protect finances. Seek professional advice from trust attorneys or financial planners.

Whatever is done do it with respect and honor for Mom or Dad.

I hope this helps ……..it is a journey and not always a joyful, easy journey but I really agree with creating the moment of joy is so important and to treasure the old memories as well as the new ones. We are here for such a short time it is just a practice field for what is to come…God Bless you Jolene for all you have done and all your legacy will do…. ~~~~Deb

Deb Lukes
Vice President
Five Points Bank

Instead of asking my mom “Do you remember…?” I would ask her “Did you ever…?” and ask about things I know she had experienced to try to bring back memories.
“Did you ever go to Cleveland Indians baseball game? I love the hotdogs covered in mustard!”
“Did you ever build a snowman?” then showing her a pix of a snowman we had made
“Did you ever see 4th of July Fireworks? I love oooing and ahhhhing over color in the sky. Being thankful for our freedom.”
If she said “no”, or “I don’t think so”, I would tell her MY experience and her eyes would start to light up and we could share a memory.
Judy Scheibe

In the early stages when mom would be so frustrated that she could not remember things and continually ask, “Why can’t I remember?”
I told her, “All you have to remember is how much I Love You.” She melted in relief and gratefully said, “Thank you”
Judy

“As a caregiver, I learned early that is doesn’t matter WHO I am, but it does matter HOW I am when I am with mom.”
Judy

If you were the soul caregiver of someone and you took care of them the way you take care of yourself, would you be guilty of neglect or abuse?

Cost of Medicine vs. quality of Life = using the money you would spend on meds on home caregiver, house cleaning, laundry service etc.

“If Mom needs attention and isn’t getting it, she just will just drop the ‘F-bomb’. It works!

Ask Jolene

My Mom has Alzheimer’s and we have a problem with her snipping/cutting her clothes. This comes from her earlier years being an amazing knitter and a very talented scrapbooker. She gradually dropped all of this, but can’t give up the scissors. Every outfit now has “self created” holes, no matter how many new ones we buy or mend.

Can you recommend something else to replace the scissors in terms of tactile stimulation? We have been successful with her coloring – and this has been a huge help. However, another idea to complement that would perhaps help us remove the scissors.

I am so grateful to have learned from you. Your talent and insight into how to continue to respect and admire her talents is what differentiates your book from all the others.

THANK YOU SO MUCH!!
Lois

Give her things to cut. So often when we take away obsessions it only gets bigger. They are doing what their body remembers and our response is to support who they are “being”.

So cutting out patterns in paper or cutting out pictures that you have just Xeroxed over and over again. Keep putting different things in her hands and she will show you what works. Maybe give back pens that she used to scrapbook with or maybe just a messed up scrap book container for her to rummage thru or placing a scrapbook in her lap that she has made.

Hope this helps…whoever she is “being” right now support that. Putting clothes in her lap that she can cut up or yarn that is unraveled for her to roll up.

Joys to you too,
Jolene

My mother did not think she needed to move so I said, “We needed to fix the roof.” Mom was happy to stay out for “awhile”… so far so good.

Thank you SOOOO much Jolene. We have found scissors that only cuts paper – not cloth, and will get her started. I bought a huge supply of Christmas cards – which means so much to her.

What really meant a lot was you telling us to “support who she is” at this point in time vs trying to change it. I am going to follow this on everything – and create as many memories as possible. We just celebrated my parents’ 60th wedding anniversary. I had their wedding photos on large boards – and she remembered every single bridesmaid – just not her children and grandchildren. Thankfully, she still remembers her husband and they support each other. My Dad has been extremely vision impaired for 40 years and she has been his caregiver. Now, he has literally risen out of his lazy boy chair to become her caregiver. It’s an amazing love story.

Thanks for all that you do – and for the unique perspective on how to support who she is right now with the the respect that she deserves.
Lois

When Marilyn Richards and her niece came to my conference in South Carolina they handed me a letter which shared how Marilyn used to be an educator on Alzheimer’s but because of a serious auto accident, which caused brain damage, she literally lost herself. Inside the letter was Marilyn’s story which her niece helped her write. I would like to share her last few sentences. “I am aware of what the future holds. I have chosen to embrace a POSITIVE ATTITUDE by living in the “here and now.” I am trying to help others do the same. My name is Marilyn Richards and I am a “Dementia Survivor!”

Marilyn is also an inspiration to us all.
Jolene

Hi Jolene –Our family took care of my Dad who had Lewy Body Dementia & with this disease there are lots of hallucinations. Family laughed at me with all the lies I told our Dad but he felt secure w/my redirection. “See that downed power line in the livingroom..yep..I already called NWE..we’re not on NWE..or ya I called Rural Electric & the power is off” (but the lites are on)..just like that he was calm. Dad & I were very close. As Dad was passing away, my brother was saying his goodbyes to Dad & he mentioned “ya know we have to forgive Karen for all the lies she told”..Dad smiled. Lots of moments of JOY with our Dad.

Your book is wonderful – thanks for helping so many people.

Karen Ulrickson

I wanted to share something I learned from a friend and used with my mother. Mom complained that she was lonely. I countered with, “Mom, yesterday so and so was here, and the day before….” Her response was a sad, “Oh, I don’t remember that.”

I got a polaroid camera and a spiral notebook. I left a note to her visitors to please take a picture of themselves with her, and then tape the picture in the notebook along with date and a message. My mother went through that book hundreds of times. “Oh look – Tom came to visit me last week. Wasn’t that nice.” Since she’s passed, I now enjoy taking it out and looking at the pictures and reading the messages that people wrote to her.

Marty

A couple living together, wife had Alzheimer’s and the husband was very embarrassed about his wife’s behavior. He was always trying to correct her. The husband was then admitted to the hospital. Daughter-in-law took the wife to visit him and he was always telling her not to do this or that because it was not appropriate. One day the daughter-in-law brought her to visit and asked him to just watch. She took out a pair of white “magic” gloves. When the wife put on the gloves, she began to dance and approached a stranger in the hall. She said put up your dukes. The man played along and they pretended to box. The husband then SAW how it was ok for his wife to be just the way she was.
Jena Cook

My husband (Dads son-in-law) happens to have white hair as does Dad’s doctor. One particularly difficult evening Dad was refusing to go to bed. Mother told him his “doctor” had been there and said he needed to sleep tonight. My husband had been there earlier and he resembles the doctor. Dad agreed to follow the “doctor’s” orders.
Cindy Burke Litbwiler (Billy’s daughter)

Pleasing family or staff is usually not the same as pleasing the person with dementia. We need to stay focused on the needs and wants of the person with dementia. I am an advocate for the person…PERIOD.
Susan Kunda

Montana Ombudsman

Mother wouldn’t allow a hired caregiver in her home. She didn’t want to “pay” someone to sit and watch her all day. So we (hired) arranged for two friends of hers to “visit” one day a week and we 5 five children take one day a week. She loves these visits— but sometimes complains that her “guests” stay too long : )

Sue & Betty

Charleston, South Carolina

Magic words to my mom. “It’s alright…It will all work out.”
Patty H.
Walterboro, South Carolina


Not forgotten
An idea from a friend of mine whose mom has Alzheimer’s. My friend is 57 and had curly hair. Her mom remembered her as being 24 years old so she dyed her hair and cut it into a “page boy” hairdo with bangs like she wore when she was 24 years old. Her mom once again recognized her as her daughter.
Kate

Cloutier, Wisconsin

It’s time to move

My dear mom is Millie Smith. When she is questioning “home”. I tell her she is fortunate- as she has two homes! One here (nursing home) and one on West St. My mom always helped everyone- especially the less fortunate. So, we mention some “folks” who don’t even have one. We come away from the “short” conversation blessed for what we “have” instead of what we don’t have. Our motto…count your blessings…there are many!
Sharon Rogers

Wisconsin

A resident was very upset because her family had just had an auction of her belongings and was selling her house. I told her I knew what she was going through because I had to leave my house, my family, my friends and move to Iowa. She just hugged me and I her. I told her anytime she needed a hug, find me, I had plenty to give.
Judy Hill

When family caregiver says everything is OK, we are doing fine. Have them write down or tell you what is happening so you can write it down and then read it back to them. When the caregiver sees what is happening written down or they hear what is happening from someone else they may simple see for the first time the real need to allow someone else to give care.
Melissa Mays

South Carolina

I was privileged to be at the IADA workshop in Indy March 11 and hear your presentation. You have re-energized me to be more aware of the moments we create. As I write this the residents are folding towels and singing along with your CD of favorite hymns. The first time I played it the residents asked who was singing as they thought one of the staff was leading the singing and felt very comfortable joining in! On St Patrick’s Day I spent an hour going room to room wearing shamrock earrings that had lights in them that flashed. The residents loved them , I had some wonderful moments and the next day one little lady asked where my earrings were! She could not remember what she had for breakfast but she smiled at the memory of the earrings! Thank you, thank you.

One of my staff told me yesterday that she was getting to know Jolene,,,,,,,,,,,,guess I have been referring to the workshop quite a bit!!

I wanted you to know what an impact you have had and how many more moments of joy will be created…….I have already seen some of my staff use some of the universal answers that I have “modeled” for them. And just yesterday I heard an aide ask one of the family members who his best friends were when he was 8 years old and explain how we can help his mother when she is looking for him………..all because the aide heard me talk to the woman about her son and asked me why I told her the boys were at the neighbors playing and would be home for supper.

Thanks again for what you do, and the blessing you are to so many.

Faye Myers
Director Programs and Services
Grace Village Retirement Community
574-372-6292

Outings with less stress
Create business cards with the persons first name and to please be patient because they have Alzheimer’s. This is great to hand to waitresses at restaurants or in any public situation. Relieves any embarrassment for the person with dementia.