Caring for a relative with Alzheimer's

By
Real Estate Agent with Grand Lux Realty, 914-419-0270, kat@thehousekat.com 10301213186

Caring for a relative with Alzheimer's

As I mentioned previously, we recently became primary caregivers for my mother-in-law, who has Alzheimer's. She stayed with us for five weeks while her husband recuperated from a broken hip. They both returned home late last week. With upcoming home care aides and extra visits from family, they are together in their home again.

Five weeks was enough time to give me a strong appreciation of both the severity of this disease, and the crucial role caregivers can play. Here are my overall thoughts, which I am sharing in the event they will help someone else dealing with the same thing.

Being always alert:

Caregiving requires non-stop attention to the person with dementia. I had to constantly watch what she had in her hands when she left the room. One night I wanted to put music on with dinner, and searched all over the place for the remote control. After dinner was done and dishes washed, it was found tucked away in her room. I would bring home a magazine or newspaper and before I knew it, it was stuck in a pile somewhere. She would dry dishes and then put them wherever she thought best so kitchen items turned up in the strangest places. But of course, even more important, I had to watch her! Several times she went stomping outside and down the front stairs, determined to see her husband. We found the inside light on in the car because she went in there for some reason and didn't close the door. She would leave the room with her TV ears and we got adept at grabbing the ears to recharge them so they'd be ready when she needed them again. It was a constant job to keep an eye on her and her belongings.

Being ready to lie

I would not have ever believed I would ever say this, but it was sometimes necessary to lie to my mother-in-law. I've always been a huge proponent of telling the truth. It pained me to make a conscious decision to say something untruthful, but it was simply necessary at times. She got incredibly anxious when she found out she had been in my house for four weeks, for example. She couldn't even remember one of the days and when she realized she'd been there for nearly 30, she just couldn't deal with the truth of her memory loss. So we started saying she'd only been there a few days. It made her much calmer. We also had to tell her she would see her husband the following day, even though we knew she wouldn't. She had a terrible time when visiting him, or more specifically, when leaving him after a visit. Temper tantrums, screaming, yelling, trying to get out of the car - the works. So with his permission, we only brought her a few times a week. But we would tell her she would see him the next day, and we would say she just saw him earlier that day. She didn't remember the facts, and it calmed her down, so we did what we had to do.

Being patient

An Alzheimer's caregiving reviewAhhh, the importance of patience cannot be overstated. My mother-in-law could ask the same question a hundred times a day. I don't know anyone who can answer the same thing patiently all day long. I had to come up with other ways to solve this. For example, the caregivers who came to the house would wear name tags which my mother-in-law appreciated. She would be able to "remember" their name by just looking at them and wouldn't continually ask who they were. I put signs on the doors of the rooms in the house. "Bathroom," for example, led her to the right room when needed. I would present her with a piece of paper in the morning that started with "Today is Wednesday, October 19, 2016" and then included the main things she asked all day such as where she was and who I was. Then depending on where her mind went that day, we would add other things, and so would she. When she asked where she was for the 50th time, I would calmly point to the paper that she had put in her pocket and tell her all the information she wanted was on that paper. Then she would take it out and read it, again, and I would maintain my sense of equanimity for another moment.

Being open to help

This is incredibly important for a caregiver. I know there are people who single handedly provide care for a person with Alzheimer's or other dementia, and seem to be able to carry the full load. But I think those people are in the minority. I know I couldn't do it. Especially since the rest of my life was taking a back seat and I had to be able to get some work done as well as household errands. I also wanted to do at least something for my own sanity. Luckily, my mother-in-law had an insurance policy that would help pay for care. With that, we were able to get someone in the house for about 5 hours a day on most work days. It did help me manage the rest of my life to some extent, but the situation was still difficult. Especially when the caregiver of the day got sick and there was no backup! If I were in a position where this would last a lot longer than it did, I would have to make arrangements with someone to come give me a more significant break. Maybe longer hours during the week, or help on the weekend as well. It wasn't good for my mother-in-law to have to go to the store because the entire thing made her too anxious. Help is a requirement!

Being flexible

screen-shot-2016-11-22-at-8-13-30-amAs with children, a routine seems to help people with Alzheimer's. If every day starts with a shower, then I think it's important to continue to do that daily. Keeping things relatively stable can help reduce anxious moments somewhat. However, that being said, remaining flexible is a must. There was the day I had a bunch of plans during the day, and 20 minutes before my help was showing up, I received a call that the aide was sick, and sorry, no one was going to come. I had to change all my plans and just go with the flow. There were times I wanted to get to the store and back in a certain amount of time so I would be available for something else (i.e., work call). Having to bring my mother-in-law with me meant extra time to ensure she went to the bathroom before we left. I had to make sure she had the right clothes on and help buttoning/zipping everything. She had to find her pocketbook and get her shoes on properly. Then there was the one inch a minute walk to the car, and the same thing on the other end. Plus all the stopping to ask questions about where we were and whether she had been there before and what road were we on and.... Well, let's just say something that would have been a 15 minutes trip could take more than double that. So being flexible with EVERYTHING is a critical skill.

Summarizing

The more I talk to people about this recent experience, the more I realize how prevalent dementia and Alzheimer's are. Many people have these diseases, and the care industry is hopping. What I also realized is there are not enough caregivers, or enough high quality caregivers, at the moment. In-home care is very location-based. If you live somewhere a little rural, you may not be able to get regular care. That's why it's so critical to expand your list of potential helpers. Perhaps by joining Facebook groups or reaching out to family and neighbors. Whatever it takes to help get the job done.

If you are put in a situation where you need to care for someone with dementia/Alzheimer's on a temporary or permanent basis, take heart. There are millions of people in similar situations who could provide a huge amount of information that might help. If you ever need ideas or would like to talk to someone who has been there, feel free to give me a call or send me an email!

And now I'm off to enjoy the rest of my day.

 

Originally published at thehousekat.com.

Posted by

 

Kat Palmiotti, The House Kat

Licensed Associate Broker, CBR®

Grand Lux Realty, Inc.

428 Main Street

Armonk, NY 10504 *

* still supporting Monroe NY, Orange & Rockland counties.

 

914-419-0270 (cell)

email: kat@thehousekat.com

www.thehousekat.com

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Rainmaker
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Mark Loewenberg
KW of the Palm Beaches - Palm Beach Gardens, FL
KW 561-214-0370

learned a lot here thanks for sharing and educating us here in the rain

Nov 22, 2016 05:15 PM #5
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

JoAnn Moore - Thank you for commenting. The paper really did help her, and after the first week or so I typed it in my computer so I could reprint it if hers got too crowded with her own notes, or if she was getting too anxious about what she wrote. I would just wait till she put it down and I'd replace it with a new one. She didn't even remember she just had a version with lots of notes on it.

 

Nov 23, 2016 07:09 AM #6
Rainmaker
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Sally K. & David L. Hanson
Keller Williams 414-525-0563 - Brookfield, WI
WI Realtors - Luxury - Divorce - Short Sale

It will be  a time you will never regret....and life lessons you will treasure.

Nov 29, 2016 05:32 AM #7
Rainmaker
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Hella M. Rothwell, Broker/Realtor®
Carmel by the Sea, CA
Rothwell Realty Inc. CA#01968433 Carmel-by-the-Sea

Kat: I've heard that often loved ones are in denial about the severity of this disease. I recently visited a couple where the wife had the onset of dementia and she realized this. She tried to hide her "mistakes", not finding things, taking hours to do an important email, etc. My heart just broke for both my friend and her husband who was the one in denial and made it harder for my friend to try to cope.

Nov 29, 2016 08:19 AM #8
Rainmaker
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Patricia Feager
DFW FINE PROPERTIES - Southlake, TX
Selling Homes Changing Lives

Dear Kat Palmiotti - Nobody really knows what to expect until they are faced with someone in this condition. Just reading your post was deja vu for me!

You covered it all so eloquently and you managed to stay sane in the process. I remembered getting on an elevator with my aunt in her assisted living home. The doors no sooner closed and she turned to me and said, what floor would you like?  I thought she was kidding me, but she wasn't. She really didn't know who I was and when I got off the same floor with her, she thought I was a stalker, following her to her room, but she couldn't remember where it was at. It was such a frightening experience for both of us. Even after we got to her apartment, she didn't believe I was her niece and I was afraid because she kept taking everything out of the kitchen cabinets. I was praying she didn't take out a knife or throw pots and pans at me. 

You are a very special woman and I know these tips you wrote about will be very helpful to others. 

Nov 30, 2016 02:07 AM #9
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

I had responded to a few comments here, and my response seems to have disappeared! 

Tammy - That was a very kind way to deal with someone who couldn't remember...

Mark - Thank you!

Nov 30, 2016 03:14 AM #10
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

Sally/David - Thank you for your comment!

Hella - It is so sad to be the person who is losing precious memories - and scary. 

Patricia - Wow, that must have been an eye opening experience! I saw my mother-in-law a few days ago and she didn't know who I was. She seemed to know I was someone she could trust, but other than that, she wasn't sure. It's so sad.

Nov 30, 2016 03:16 AM #11
Rainmaker
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Lawrence "Larry" & Sheila Agranoff. Cell: 631-805-4400
The Top Team @ Charles Rutenberg Realty 255 Executive Dr, Plainview NY 11803 - Plainview, NY
Long Island Condo & Home Sale Specialists

Been there Kat. It's so sad to see these once vibrant adults in this condition. I speak from experience and know the challenges...

Nov 30, 2016 01:46 PM #12
Rainmaker
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Gabe Sanders
Real Estate of Florida specializing in Martin County Residential Homes, Condos and Land Sales - Stuart, FL
Stuart Florida Real Estate

Good morning Kat.  I know that I couldn't do what you've done for your mother in law.  I hope that it's appreciated.

Dec 01, 2016 04:07 AM #13
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

Larry/Sheila - Thank you for commenting. It is sad.

Gabe - Thank you for stopping by. I believe it is!

Dec 01, 2016 04:37 AM #14
Rainmaker
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Gita Bantwal
RE/MAX Centre Realtors - Warwick, PA
REALTOR,ABR,CRS,SRES,GRI - Bucks County & Philadel

Kat, thank you for sharing . I learned a lot from your post. I hope all caregivers are as kind as you are to your mother in law.

Dec 03, 2016 05:52 AM #15
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Carol Williams
U.S.: I specialize in helping agents who have been in the business 2 years or less create a thriving business. - Wenatchee, WA
"Customized Mentoring & Marketing Services"

What a wonderful post, Kat Palmiotti .  Thanks for sharing.  I applaud you for what you have done and will do in the future.   If it is in the best interest of the patient, lying is absolutely a viable option.  Noone can handle caregiving 24/7. They may appear to be strong and able to handle it but inside they are suffering physically and mentally.   Be good to yourself.  Hugs. 

Do you have any reservations about me reblogging this?

Dec 04, 2016 10:20 AM #16
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

Gita - Thank  you! I hope they find a cure for this asap!

Carol Williams - Thank you, and yes, I did have to tell some fibs - I knew it was necessary but I hated \doing it! And you are right, no one can do 24/7 caregiving. And no, I have no problems with a reblog - thank you for asking.

 

Dec 05, 2016 03:01 AM #17
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Debb Janes EcoBroker and Bernie Stea JD
ViewHomes of Clark County - Nature As Neighbors - Camas, WA
REALTORS® in Clark County, WA

My father's dementia is not this severe yet, but we do have similar experiences with him. My parents live with us and we are always watching mom's moods too - it's very tough on the partner not suffering from this condition. My heart goes out to any family who faces the emotionally devastating effects of memory loss. 

Dec 05, 2016 07:01 AM #18
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Debbie Reynolds
Platinum Properties - Clarksville, TN
Your Dedicated Clarksville TN Real Estate Agent

I can so empathize with you. My Mother-in-Law lived with us for a year after she had a fall and that is when we discovered how severe her disease was. It actually changed her personality at times. She got very quiet and withdrawn and almost never contributed to conversations. She would get hostile and act like a child.

She forgot where she put things and accused me of taking them. We had to launch all out hunts for things and still she didn't remember.

We found a good place for her to live and later got her daily assistance.

She got leukemia the next year with a fatal prognosis. The day she was diagnosed she was very lucid and understood what the doctor said. The next day she was so tired and didn't understand why. When we told her it was the leukemia she was horrified and didn't remember she had cancer. We told all her friends and other family members to not bring it up again. When she died a couple of months later she thought it was because she was old. She never remembered having cancer. She lived to almost 88.

 

Dec 05, 2016 10:30 AM #19
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

Debb - I agree about it being difficult on the other partner. I have learned a lot about what other families are dealing with - it's so sad.

Debbie - That's such a sad story as well. I wouldn't have mentioned the cancer again either. And I know what you mean about the moods. It's not an easy disease to deal with.

Dec 06, 2016 02:44 AM #20
Rainmaker
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Sybil Campbell
Long and Foster REALTORS® 5234 Monticello Ave Williamsburg, Virginia - Williamsburg, VA
REALTOR® ABR, SFR, SRES Williamsburg, Virginia

Hi Kat, I don't need to tell you what a great thing you have done. Thank you for sharing your experience with us.

Dec 06, 2016 07:35 PM #21
Rainmaker
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Kat Palmiotti
Grand Lux Realty, 914-419-0270, kat@thehousekat.com - Monroe, NY
The House Kat

Sybil - Thank you for stopping by and leaving your kind comment.

Dec 07, 2016 02:15 AM #22
Rainmaker
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Lou Ludwig
Ludwig & Associates - Boca Raton, FL
Designations Earned CRB, CRS, CIPS, GRI, SRES, TRC

Kat

Caring for a relative with Alzheimer's can be very challenging.

Good luck and success.

Lou Ludwig

Dec 13, 2016 08:03 PM #23
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Michelle Carr-Crowe-Top 1% Diamond Certified Real Estate Team Sells Cupertino San Jose Homes-Just Call 408-252-8900
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It is an exhausting challenge to deal with Alzheimer's in a loved one.

Dec 19, 2016 06:55 PM #24
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