Four years in memory care

Crushed

It's now been 4 years since the woman who was my lovely, brilliant, loving wife  went into memory care.   She has not the slightest idea who I am, or anyone else for that matter.  She is unsteady walking so she sits much of the time,  often silent as if  gibberish takes too much effort.  She seems to enjoy the blueberries and brownies.  But there are no smiles.   She is 69.  I have to admit a sort of jealous hostility when encountering those who made it to 70 before  this disease destroyed their lives. I sometimes feel they don't understand what Early onset is really like.  She was 58 when she failed the clock drawing test.  11 years later she is still one of the youngest patients.   On a good day I sit on my deck and look at hummingbirds.  Just like the song :

I know a woman Became a wife

These are the very words she uses
To describe her life
She said a good day
Ain't got no rain
She said a bad day's when I lie in bed
And think of things that might have been

  

David J

Crushed-

I just dropped off the completed application for the MCF and my wife goes in on Wednesday. She is only 66. 

I hope you have a good day today. 

Dave

LadyTexan

I am so sorry gentlemen. I cannot imagine how heartbreaking this is. 

I hate this disease. I hate what it does to our loved ones. I hate what it does to us.

I wish you peace.

Crushed

all I can say is that Perhaps I know how your feel

Best wishes 

Michael Ellenbogen

Do you really want to talk to her again? I just may be able to help you do it. Reach out to me privately and I will tell you what may work which has been tested with many with success. Then you can write about it. I believe you are open enough and smart enough to do it.

DrinaJGB

When a rare and deadly virus attacked my DH's brain and nearly killed him--and his memory/executive functioning he was at the height of his career; 52.

 In one day it all got taken away and we've struggled with the brain injury and sequelae of that disease nearly a dozen years now.

  I liken it to the Tibetan monks slowly and tediously producing their glorious mandalas; and with one sweep it's all destroyed.

I don't remember who we used to be any longer. I just carry on in an automatic way and try not to feel anything anymore.It seems to be the only thing that works.

John1965

https://youtu.be/iUODdPpnxcA

John1965

https://youtu.be/iUODdPpnxcA

Trust me, I get the jealous hostility. Ain't nothin' good 'bout this for no one.

Daizey

My heart goes out to you. Is there a volunteer organization that you would like to join so that your time spent away from your wife would feel meaningful? 

My mom passed away from Alzheimers 25 years ago. My dad devoted himself to her at home longer than he should have. Once she was in a nursing facility, he spent all day every day by her side. The stress was unbearable for him. He passed away from heart failure before Alzheimers claimed her.

If there were an activity in which you could participate and gain satisfaction, it could make the biggest difference to you. You can't change her future, but you can control yours. Wishing the best for you.

Crushed

Michael Ellenbogen wrote:

Do you really want to talk to her again? I just may be able to help you do it. Reach out to me privately and I will tell you what may work which has been tested with many with success. Then you can write about it. I believe you are open enough and smart enough to do it.

Michael I can talk to her all I want. Its expecting an intelligent response back that is the problem

Please don't play "secret remedy" games  wiht me

It demeans both of us

JoseyWales

I've been here long enough to remember when you need to place your DW. I can't believe it's been 4 years already. Time is both slow and fast.

I love hummingbirds. I have several (ok, about 8) feeders up around my house, and have done that for over 20 years. I have a solid hummingbird colony going. In the early morning and evenings I can sit on the porch and count at least 20 at once. I have no idea how many more are in the trees or the back feeders. We're in northern Indiana, and I just read that at times the ruby throated hummingbirds winter over here. I'm going to leave a feeder out this winter to see what happens.

We still have lots of hummingbirds that haven't migrated yet, and I assume many migrating through that stop for drinks.

Paris20

Crushed, I am truly sorry for your losses and your grief. Someone wrote there’s nothing worse than mourning the loss of someone who’s still alive. Your wife reminds me of a supernova, a bright star that is soon gone. Sadly, those of us dealing with Alzheimer’s and other forms of dementia have few metaphors to give us any solace. Supporting each other is important. Avoiding those who have no idea what we’re going through but want to provide us with their unsolicited advice need to be avoided.

Michael Ellenbogen

I guess its you lose as I have had others do it and most were successful to find a new way. I gust I gave you to much credit.

DrinaJGB

Josey--I, too love hummers and have feeders up. They are everywhere now and we both love looking at them. One feeder is at m bedroom window so first thing I see is a hummer on that feeder. The little guy sits there and also rest on the rose bush limb under the feeder. It is so entertaining! My DH always ask each morning "have you seen one yet?"

FYI--Feeders should come down end of Fall, so the stragglers do not linger and get caught in winter freezes, and continue to migrate to a warmer clime.

Happy Birding

Crushed

Michael Ellenbogen wrote:

I guess its you lose as I have had others do it and most were successful to find a new way. I gust I gave you to much credit.

Michael this is BENEATH YOU  There are no secret remedies and you don't abuse peopel who dont buy it.

Iris L.

I think Michael is talking about a technique to enable advanced patients to speak a few words.   I saw this exhibited when I was in medical school which was of course many years ago.  A woman who hadn't spoken for a long time was able to recite "Mary had a little lamb."  Since my field was pediatrics I had no further interest in this technique at the time.  It's not a remedy, it's a technique.

Iris

Crushed

Iris L. wrote:

I think Michael is talking about a technique to enable advanced patients to speak a few words.   I saw this exhibited when I was in medical school which was of course many years ago.  A woman who hadn't spoken for a long time was able to recite "Mary had a little lamb."  Since my field was pediatrics I had no further interest in this technique at the time.  It's not a remedy, it's a technique.

Iris

I am well aware of the effort to extract "words" from gibbberish speaking late stage patients.

That is not intelligent conversation any more than getting a parrot to speak "words". Our memories can store  words and phrases disconnected from any other reality

Michael Ellenbogen

It’s sad when people think they know it all and don’t want to try something that could actually help them. This is from something I conducted with manty others about 10 years ago. It worked and had shocked all of the caregivers. I have personally done this in from of a caregiver who insisted their love one could no longer speak to them. They were wrong as are so many. I was looking for this document below but could not find it. Some one I worked with had shared it back with me.

 

 

 

 

 

LIVING LIFE WITH ALZHEIMER’S DISEASE

Below are some articles I have written in the past, you may learn how someone with AD is dealing with this disease.  These are my favorite that I feel people have been able to learn and see another side that they did not know before.

 I have worked on this for about five months, and recently I shared the email below with many sites related to AD for feedback. Most of those who had reached out to me were able to support my findings.  The bottom line is that while most of us have limited thinking capacity many are able to communicate; we just have to find a way that suits the individual. I received a lot of feedback. My biggest concern is that most people are clueless, and assume that we cannot understand what they are saying about us; many say cruel things. Just try to imagine for a minute what it would be like to hear what others may say or do to you, and you are never given an opportunity to defend or express yourself. That is what is happening to most of these folks.

We must find a better way to educate caregivers, health professionals, and all those working with people living with this disease. The biggest problem I see is that everything is time-based because of the costs. This view will not work for people. It will also take special training, and the need to break with our normal habits of communicating. If we are going to be able to reach out to them, we need to change.  We are still human beings and we deserve to be treated in a respectful and dignified manner.  

My name is Michael Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.

I have learned that as we progress with Alzheimer’s/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true. 

It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.

Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.

Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer communicate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.

I don’t want you to think it’s going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer’s. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.

When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your loved one.

Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like “do you love me? If yes lift your finger or lower your finger”. Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue.  If you do see something make sure you point that out to them and ask them to do it again to insure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask. 

Also keep in mind if the person has not had any real dialogue with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong.

If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.

 

jfkoc

I am always mindful that our hard days did not happen  until my husband was in his early 80s. We were well into retiremant and were ready to slow down. Loseing a spouse was  hard but I did not feel that I lost a future. That has to be so much harder.

Crushed

Michael
I have been married to DW for 46 years. 

I assure you I knew every, phrase, nuance gesture eye roll  and all verbal and non verbal coomunication ' 

Hours and hours and hours were spent doing exactly what you describe .  With great difficulty I extracted meaningful communication from her up to three years ago 

She could respond to a single word up to two years ago .  Since then IT IS GONE

  

​NorthWoods

Dear Crushed, I have been away a while  but I remember the heartbreak when you finally placed your dear wife. You had worked so hard to care for her and with so much love. I placed my husband about six months later.  It is such a difficult road. There are no magic wands, no crystal balls, and no road maps   We’re  all just doing the best we can.  Be kind to yourself. You deserve it.

Buggsroo

I can relate to this on many levels.

Yesterday was my birthday and I had to work designing papers during the election. I told everyone it was my birthday in a zoom meeting. My husband can’t even remember when he last ate, let alone my birthday. I felt this horrific sadness because while I am not alone physically, I am mentally.

I take comfort from watching the antics of the trash pandas aka raccoons scampering on the fences, chittering at our cats. I call this the God of small things, little exquisite things that lift you out of the continual sadness we face. Crushed, I feel for your sadness, I am glad you have the hummingbirds. 

Michael Ellenbogen

 Please accept my apologies but I just could not let it go if I thought there was a small chance to help you. I was so hoping this may have opened the door for you. At the very least it will help others. Again I truly apologize for pushing so hard but I do care for you.

Stella Luna

Crushed,

I can’t believe it has been that long, I remember when you were considering placement for your DW. We are losing our LO one day at a time and keep hoping the disease stops. I am sorry, may you find comfort in your beautiful caring family.