topic Re: Dealing with Dementia advice? in Community Chat

Dealing with Dementia advice?

Shorty2U — Sat, 28 Sep 2019 04:49:52 GMT

Does anyone have advice on dealing with this? (I looked up some advice but it seems for more advanced stages).

My very good friend and old neighbor since I was a kid has dementia, which seemed to start the past 6 months. (Shes older than me but her family and my family and all were very good friends from back in the day, and well her and i are friends since forever).

I talk to her one time and shes really good. The next time, not good at all.

Tonight she asked me why was I calling now? How do I know her and her husband just got home, was I watching them? (I simply said no i figured you were home, its right after dinner time).

Then I said oh you two were out, that's nice (her and her husband). She said they were in Ohio seeing their daughter. (We live in PA but her daughter lives in Ohio) Then she said to her husband we were in Ohio right? He said no, we were at the store. ( I was choked up) Didn't know what to say.

Then we talk a while and shes ok. Then she said all of a sudden, oh I just checked the calender, my husband and I's anniversary was in June. Then yells to her husband that they forgot their anniversary (they didn't, its right near her birthday, and I spoke to her then and wished her a happy birthday and happy anniversary).

Then she said oh I have to tell you, sometimes I forget what I'm doing and where I am. (I didn't know what to say again).

Last week when I spoke to her, she was fine, then suddenly she put the phone down and never came back. I called her name several times then just hung up. (I knew she was ok because her husband was home and I heard the tv over the phone).

This is all quite sad. I keep composed, but I usually hang up choked up. I dont call to talk to her husband or children about this because they know, because months ago she told me she had a Dr visit about her memory (because she had misplaced their bill money). And we sometimes visit them (but not recently).

I don't want to end our friendship of course. DH and I are going to try to drive to visit her and her husband soon. But,I just don't know what to say to her. I try to engage her in talking about the good old days (because she tends to remember all of the past as of now).

When she talks like this should I just say oh that's nice? Oh I see? Or just keep quiet and let her talk?. (I just don't know how to handle this and want to be as kind as I can be and not say anything wrong!).I just cant imagine what she is going through. And her husband (God love him), hes a wonderful guy, always has been. I bet hes upset, as well as her kids and grandkids.

Re: Dealing with Dementia advice?

patbz — Sat, 28 Sep 2019 05:07:52 GMT

@Shorty2U : I think you hit an important point: Many with dementia remember the past better than the present. Since you've been friends forever why don't you bring yearbooks, wedding albums and such next time you visit? Also any old music (maybe a DVD and player next time you visit?).

Re: Dealing with Dementia advice?

Anonymous032819 — Sat, 28 Sep 2019 05:01:26 GMT

My advice as the daughter and caretaker to a father who had dementia is to try to move in to their world.

In other words, if she says that she sees a big purple flying dinosaur, don't try and correct her, just go with the flow, and say that you see it too.

I'll never forget one night as I was about to leave work, I spoke with my dad on my phone.

I had it on speaker, and my dad asked me where Mom was (she had been dead for about 15 -16 years at that point).

I just told him that she was out visiting friends.

He said, "She's in Sacramento isn't she?"

I just agreed with him.

He also thought that I worked in Sacramento (I don't) and said, "Well, you have a long drive ahead of you.", I was only two towns away.

Yes, it was heartbreaking, but I had to adapt to his world, and not try to force him to live in mine.

Yes, it is heartbreaking to see, but cry in private.

It's good to talk about the past.

Play music that she likes, do simple tasks together.

Since her husband is her caregiver, offer to spend time with her so that he can get out of the house alone to get a break.

That's about all of the advice that I can give.

Good luck!

Re: Dealing with Dementia advice?

manny2 — Sat, 28 Sep 2019 05:26:32 GMT

It is a difficult disease to navigate, because in the beginning you will see moments when the person seems to be almost normal. Then the reality of the disease rears it's ugly head and either they are confused, or angry or fearful, and paranoid. The best advise is to become a part of their reality. Don't pressure them to remember just go along with whatever they say. If they get angry or agitated try to redirect them if possible.

Re: Dealing with Dementia advice?

manny2 — Sat, 28 Sep 2019 05:28:47 GMT

@Anonymous032819 wrote:
My advice as the daughter and caretaker to a father who had dementia is to try to move in to their world.

In other words, if she says that she sees a big purple flying dinosaur, don't try and correct her, just go with the flow, and say that you see it too.

I'll never forget one night as I was about to leave work, I spoke with my dad on my phone.

I had it on speaker, and my dad asked me where Mom was (she had been dead for about 15 -16 years at that point).

I just told him that she was out visiting friends.

He said, "She's in Sacramento isn't she?"

I just agreed with him.

He also thought that I worked in Sacramento (I don't) and said, "Well, you have a long drive ahead of you.", I was only two towns away.

Yes, it was heartbreaking, but I had to adapt to his world, and not try to force him to live in mine.

Yes, it is heartbreaking to see, but cry in private.

It's good to talk about the past.

Play music that she likes, do simple tasks together.

Since her husband is her caregiver, offer to spend time with her so that he can get out of the house alone to get a break.

That's about all of the advice that I can give.

Good luck!

@Anonymous032819 You gave some good advise here. I am sorry you went through this with your father it is not easy.

Re: Dealing with Dementia advice?

Flatbush — Sat, 28 Sep 2019 05:48:06 GMT

I have dealt with dementia ( Mother & close friend ) and am still dealing with it. I think dealing with their reality ( as hard as that is) is the way to go here. You can always try to change the subject i.e." I was watching TV and the people were talking about the games they played when they were children, did you play potsy? or red light green light" " In other worlds,change to a different topic.in your conversation. It's hard, you are sad that she is suffering. Try and stay a short time if it gets too difficult. I'm in the middle of it too, so I understand how you might feel.

Re: Dealing with Dementia advice?

RedTop — Sat, 28 Sep 2019 06:37:01 GMT

@Shorty2U,

My mom was diagnosed with dementia 2 years ago.

Prepare to be upset once you see your friend and watch her in her home environment. What you see will likely not be the friend you remember.

My mom still functions very well in her home; you may see that your friend may has issues along that line. It sounds like your friend is too unfocused for phone conversation, and will likely be the same in person. I won’t keep mom on the phone more than 10 minutes; short, sweet, no details. When I visit in person, I do most of the talking, as mom often can’t express her words. She knows what she wants to say and can see the words in her mind, but cannot get them from her mind to her mouth. She very rarely remembers the things I’m talking about, but surprises me with what, and how, she does remember at times.

Mom needs very specific instructions and reminders these days; sometimes written.

I hope your visit will go well.

Re: Dealing with Dementia advice?

PamfromCT — Sat, 28 Sep 2019 09:26:22 GMT

@Shorty2U, I am sorry for you, and everyone else, dealing with this issue. My mother had dementia in her last years, and it is a heartbreak you must adjust to. My mother had what is called “sundowning” dementia. In the morning she seemed fine and normal, but when mid-day hit, so did her dementia. Does this dear lady experience this up and Down syndrome? If so, the early part of the day is an ideal time to communicate with her. I completely agree with the advice not to try to ground her in reality. Just go along with what she says. No matter what. I am sure any medical professional will give you the same advice.

My dear mother would lament that she hadn’t called her mother lately (who had passed so many years before). I would tell her not to worry, that I had called her, and that Memere (her late mother) was doing fine. Our goal was to never upset her.

It is a journey that will take you to acceptance of your friend’s reality. It is tough, but you will come to accept it. All my best wishes.

Re: Dealing with Dementia advice?

violann — Sat, 28 Sep 2019 09:37:08 GMT

Such a beautiful compassionate collection of comments here. Thank you and Bless you all for being so wise and loving!

I have lived in and out of the world of dementia since I was 12. My grandfather was 10 years older than my grandmother, and when he died of a brief illness at the age of 82, her world was taken away, and her depression and grief were quickly replaced with the dementia that ultimately took her 10 years later.

I find the term”broken brain” serves me best in understanding the process of the kinds of dementias I’ve known, and the victims.

Most of the dear people I’ve known who have spent their last years in the lost world of dementia have also suffered with anxiety, and it’s sometimes very severe.

It seems to me that the symptoms of dementia can be difficult and confusing to identify, or can hit you as a hard slap in the face, when you notice that someone you love and knew as a sister or brother has made a verbal slip, or reacted with an expression of panic, or you receive a tearful phone call that they’re lost or can’t find their way home....

Two general thoughts about living as part of the life of someone with dementia-

No positive purpose is served by denying or trying to confront the damaged thinking, or sometimes paranoid reasoning, or any of the aberrant behaviors you may see. The victim of dementia can’t fix what they do, or really use something you might suggest, or comprehend what effect their words or actions will have in their future.

My second point is that no one- NO ONE, knows the life of a caregiver until they’ve lived it. If you learn that a family member, legal representative, or other loving responsible party has been obliged to seek residential care for someone who is living with dementia, PLEASE don’t judge the caregiver’s situation. Each situation involving dementia has basic similarities but also differences.

There are NO HAPPY ENDINGS in decision making when caring for a dementia patient whom you love, and NO “RIGHT or “GOOD” choices.

I see beautiful glimpses of the LO I’m presently losing, day by day. Her needle sharp sense of human, her wisdom, her love of children and family. Short circuits often, but flashes of herself still there. I visit often because I love to be with her. Whether the visit is a pleasant, peaceful one or she’s frantic with anxiety, it always hurts each time I leave her and it always hurts to stay.

Re: Dealing with Dementia advice?

panda1234 — Sat, 28 Sep 2019 10:00:09 GMT

@Anonymous032819 wrote:
My advice as the daughter and caretaker to a father who had dementia is to try to move in to their world.

In other words, if she says that she sees a big purple flying dinosaur, don't try and correct her, just go with the flow, and say that you see it too.

I'll never forget one night as I was about to leave work, I spoke with my dad on my phone.

I had it on speaker, and my dad asked me where Mom was (she had been dead for about 15 -16 years at that point).

I just told him that she was out visiting friends.

He said, "She's in Sacramento isn't she?"

I just agreed with him.

He also thought that I worked in Sacramento (I don't) and said, "Well, you have a long drive ahead of you.", I was only two towns away.

Yes, it was heartbreaking, but I had to adapt to his world, and not try to force him to live in mine.

Yes, it is heartbreaking to see, but cry in private.

It's good to talk about the past.

Play music that she likes, do simple tasks together.

Since her husband is her caregiver, offer to spend time with her so that he can get out of the house alone to get a break.

That's about all of the advice that I can give.

Good luck!

@Anonymous032819 I work in a nursing home and everything you said was on spot, good advice. My hat is off to you for taking care of your dad. You are a good daughter, no one knows how hard that is unless they have done it. I hope someone relieves you from time to time.

Re: Dealing with Dementia advice?

cherry — Sat, 28 Sep 2019 10:02:18 GMT

Just love them.Perhaps you can make a dish and take it to them ,on occasion.The husband is swamped, and needs all of the support he can get ,as well

My mom had Alzheimer's and sometimes ,just a new face cheers them up. If it is a bad time for them , you can just say ,I stopped by to say hello, and bring you these____ because I want you to know how much you both mean to us

Re: Dealing with Dementia advice?

PamfromCT — Sat, 28 Sep 2019 10:13:12 GMT

@violann, I feel so badly for you. All I can say is “I know.”

Thank you for advising people never to judge. My mother had perfect health until the last years of her life. Then, her health deteriorated to the point she needed skilled nursing care 24/7.

She was even still hospitalized many times. Whenever anyone says, “I would never put my parent in a nursing home” I cringe. It is your duty to ensure your parent gets the medical care they need and deserve. And we were there all the time, visiting and ensuring she was being well taken care of. It is tough, but we felt it was our duty and honor to oversee she had the best of care. Was it easy? No. My mother went to heaven ten years ago, and I still miss her so.

Re: Dealing with Dementia advice?

janeec — Sat, 28 Sep 2019 10:15:25 GMT

Many with dementia, especially in the early stages, have anxiety as they change from reality to the past, and back. They realize something is happening to them. Once they are completely in the past, their anxiety is reduced. It's the process that is scary for all.

A helpful item is a notebook that all who visit, or call (this is for the caregiver, her husband) write in the notebook what happens and who visit. Everyday someone can review this with her.

Do visit her. Many people are afraid to be near those with dementia. The opposite is needed. Enjoy what moments you can with your friend. It will bring her comfort, and her husband as well.

Re: Dealing with Dementia advice?

Harpa — Sat, 28 Sep 2019 11:35:53 GMT

link

I'm a strong proponent of proper diet!

Re: Dealing with Dementia advice?

Nonametoday — Sat, 28 Sep 2019 12:03:39 GMT

Yes, so many sweet and accurate points made in all these posts. One thing that is very important to her will be you, a friend from her past. They seem to do better when they are with people from their past. They might not always be coherent and cognizant, especially when tired or moving to different environments but familiar faces are good for them.

I suggest you read the book "The 36-hour day." It is such a great book that spells out some of the pitfalls but some of the greater times and good advice in dealing with dementia patients. My mother had Alzheimer's and my husband does now. They were entirely different but exactly alike in that she was pleasantly demented and he is angry.

They remember the past much better than the present, oh that long-term memory. She enjoyed most everything from day to day, even when she was chairfast and in pain; my husband, on the other hand, enjoys so little. She was cheerful in the worst of times and he is angry most of the time. He is constantly complaining, condemning and criticizing both the grown children, the grandchildren and of course, me. He is almost violent in his outbursts.

My mother enjoyed her siblings and her old friends, most of whom she outlived. My husband does as well and that seems to be the only time he is happy, with his siblings or his friends from his youth. My mother rarely recognized me but recognized my husband. She thought our children were my siblings. She would ask where were my children and why did they not come to see her (while talking to them).

In their past, my mother and husband had similar personalities. They were very laid-back, never met a stranger, never complained, just took life in stride and knew things would work out for them. I was the worrier and they both admonished me to quit worrying (mostly about my children).

But their dementia made them different. He is totally opposite of what he was and my mother although forgetful and recalling the past constantly, was still a happy person until she died. She did have days near the end where she was in constant pain but she never complained but you could see it in her face.

Doctors have explained to me the difference and why some are angry and others are pleasant, but it still hurts to see my husband so angry. That is the part that I do not recognize and find hard to deal with. It's a day-to-day struggle.

Re: Dealing with Dementia advice?

jellyBEAN — Sat, 28 Sep 2019 12:14:00 GMT

You've gotten very good advice here. When you go to visit, bring along a favorite food item that you remember she liked back in the day. If she was into gardening, perhaps some flowers to brighten her surroundings. Enter her world - that's the best advice. Don't argue over facts. Do not try and reason. Dementia is severe inflammation of the brain. The brain is like swiss cheese. It can't always make the right connections anymore.

It is an extremely difficult condition to accept, both for the individual AND the caretaker. And it can last YEARS. My Mom's downfall was 10 years in the making beginning at age 85 and lasting until she was 96 1/2. It makes me cry just the thought of it. Anyway, follow the tips as mentioned in your thread. All very good advice.

Re: Dealing with Dementia advice?

sidsmom — Sat, 28 Sep 2019 12:34:47 GMT

So many good suggestions upthread!

Seems we all have a story.

My mother is in her mid-90s w/ later stages of dementia.

The nurses at her nursing home had some sage advice.

Their code of conduct is to always tell the truth.

If she gets agitated, change the subject.

Mom doesn’t get upset very often but she repeats herself

or asks me the same question 2-3x every minute.

I’ll continue to answer...but around that time, I’ll pull out

some pictures & let her look at them.

I know it’s hard to see someone we love turn into a different person.

Being patient is key. And sometimes...just let her talk.

Good luck🌼💛

Re: Dealing with Dementia advice?

on the bay — Sat, 28 Sep 2019 12:38:02 GMT

@Nonametoday =

Your post made me cry.

Such a loving thoughtful post.

Re: Dealing with Dementia advice?

just bee — Sat, 28 Sep 2019 12:44:43 GMT

@Shorty2U

Yes, this is all very good advice. And @violann is absolutely correct about the role of the caregiver and the agony of making decisions about the care of the person who is living with a cruel -- perhaps the most cruel -- disease.

Just know that no matter what you do you will second guess yourself and feel guilty.

If I had to boil down all the advice into one small piece I'd have to tell you to do one thing. Be patient. It's one of the hardest things to do on some days because you'll find yourself so tired and so angry. But remind yourself that you're not angry at the person -- you're angry at this horrible disease.

Re: Dealing with Dementia advice?

ROMARY — Sat, 28 Sep 2019 16:00:56 GMT

I haven't read the other replies.

Sometimes it's a new medication or interaction with another med/meds, or a urinary tract infection (UTI) that causes confusion.

(I've seen this happen.)

I'm only guessing that she's been under recent doctor's care? If not, an office visit would be helpful.

An ER doc told me that he's observed/treated even people in their 40's who have been very confused due to UTI's.