Visiting my dear friend in Florence, AL35630 next week: How to adress the topic?

kerstinfromgermany

Hello, I am Kerstin from Germany. About 35 years ago I stayed with a family near Chicago for while to take care of their disabled son. I returned to Germany but we stayed in contact ever since, we are like family.
The mother (age 76) has now been diagnosed with dementia, but is in denial. At present she lives at her niece's house, the doctors say, she cannot live alone (resp. with her son, age 46) anymore. This is all very disturbing for me, since she is like a second mother to me. So I decided to fly over there and assess the situation.
The niece says not even to mention the word dementia, since it makes her really angry. But I think, of course we need to talk about it, since this will change not only both of our lifes totally. I would be very thankful, if somebody living in the area would be willing to talk to me about his/her own experiences with their own condition or as a caring relative and how to adress the topic without hurting anybodies feelings. And maybe even talk to the two of us.
Of course, I still have to get an idea of how badly my friend is actually affected. Or whether the niece is perhaps exaggerating. Maybe read the medical reports. I would be grateful for information on specialized doctors and facilities that specialize in the largely self-determined accommodation of dementia patients. I don't think it will work out in the long term with my friend staying with her niece. These topics are very difficult to google because I don't know the specialist terminology and therefore don't know what exactly to look for.
I will be in Florence from December 19 to 27 and would be very happy to make personal contact. I am the mother of an adult son, 56 years old and work as an administrative assistant in a solar research institute in south-west Germany. Just so you know a little about who you are dealing with here.
Please send me a note if you can/want to help me in this matter in person. Or answer to my post if you have any helpful advice. Thank you!

JDancer

The PWD (person with dementia) isn't in denial. They probably have a common symptom called anosognosia, which makes them truly unaware. I see nothing to be gained by mentioning the word dementia or trying to discuss it with her.

It's unlikely that this forum will lead to an in person meeting, but I'm sure folks will send lots of links and suggestion for reading material to educate yourself. Most of us have been caring for PWD for many years. Learn as much as you can.

Unless you're going to take over this person's care, I suggest you tread lightly. Find out what has been done and what the caregiver feels is needed. Dementia is a devastating disease for everyone involved. I'm sorry you're in this position.

kerstinfromgermany

Thank you for your sympathy and the information about anosognosia. It's just very important to me to meet her at eye level. Am I doing that if I don't bring it up, if she doesn't bring it up on her own? Am I then not a stalker who is observing from the outside without the person being observed knowing anything about it? I know I still have a lot to learn on the subject...

Jeanne C.

It's very kind of you to be so concerned about your friend.

I will say that you need to adhere to her family's wishes and not mention dementia to her. Anosognosia makes it so a person with dementia is unable to see or understand their symptoms and challenging the PWD is only going to upset, confuse, and cause mental anguish.

Please do not intrude on the care your friend's niece is providing. A PWD can often "showtime" or use their cognitive reserve to temporarily seem more aware, less confused, and generally less symptomatic. Her niece is managing daily care of your friend. By all means find out from her how you can offer assistance from a distance, but it would be disrepectful and potentially harmful of you to interfere.

Emily 123

Hi Kerstin,

This will help, and there may even be a version written in German, if you search for it. It's titled ''Understanding the Dementia Experience'..https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience

One of the things to understand is that the disease will have disconnected your friend from reality by affecting how she can process and retain information. It prevents people from forming new memories and erases old ones. They cannot sense the passage of time anymore or that they have the disease. They will assume that they are living life as they always have, because the memories they can access are older ones.

The memory loss is just the most obvious thing we see as we interact with them, but many abilities are affected as the disease moves through the brain--reasoning, logic, engagement, ability to do multi-step tasks.

When you try to discuss their dementia with them, it will not agree with their reality and it will upset them. Their memories may be jumbled together, and not match what you know has happened in the past, but you should agree with them, and not correct them (it's hard!) since this helps them feel less confused. There is no point in trying to force her to recognize that she has a disease-all you'll do is upset her.

That's why her niece is telling you to avoid discussing it. When in doubt, ask and do what the primary caretaker tells you.

This video might give you some good tips on interacting:

https://www.youtube.com/watch?v=rO50pVUOlbE

Best regards,

terei

I would suggest starting by reading The 36 hour Day + other books giving you clear information about dementia. Your friend’s brain is compromised + it is a 100% progressive disease which will compromise it even further. Using words dementia or alzheimer’s are not going to helpful in communicating or understanding what your friend is going through + may provoke anger and/ or denial + may prevent you from any positive interaction.

You may want to gently ask about her ‘health’ + see what she brings forth. I am going to guess, but I would not be surprised if she says she is just fine, but that the doctors + family are making a big deal about issues she has that are from aging normally. Also, do not be surprised if she seems completely fine ‘Hello, it’s so good to see you!’ and other social patter …. at first. The more time you spend with her, the more you will see how she is ‘off’. It could take so many forms, that it would be impossible to list them all. Common ideas from a PWD might be: a certain person or people are stealing from her, or hiding things from her. The neighbors are doing something very odd or illegal to try to annoy or even harm her(paranoia). Repeating the same subject or question(s) over and over. Complaints about common appliances or tools ‘not working’ or broken.(since she cant figure out how to use them any more) The relatives may tell you she has gotten lost or messed up her finances (which she will likely deny).

I would have a private conversation with the person who spends the most time with her. That is the person who is most likely to have observed + experienced the most extreme behavior. I would probably do that by phone before you even see them. Your friend will not be a trustworthy reporter of her own health or behavior.

She will be living in her own reality, the best approach is to join her there. Being non commital about clearly illogical statements or steering conversation to different subjects without questioning her assertions is going to bring the best result. I’m afraid you will no longer have the relationship you once had, because she is no longer the person she once was. I would be very very surprised if the daughter in this situation is exaggerating, as a matter of fact, it maybe the opposite, that she is not reporting the ‘worst’ issues to try to protect mom’s dignity.

terei

I erred in referring to daughter….niece is the caregiver. And remember, friend may seem pretty much fine unless you are able to spend an extended period of time with her….like 48-72 hours. I would caution against trying to have an open ‘normal’ conversation with the PWD about her illness + expect her to much, if any, insight or ….that would not be the norm, IME.

Whyzit2

Talk about shared old memories, love on her and enjoy your time together as an old friend would do. Do your best to be a refreshing pause in their lives while creating a pleasant memory of you. Other than that it is not your business to interfere in their lives. Please do not make a difficult situation worse by imposing your judgement on her situation. After all you are only visiting for a short time .

the bff

Let me jump on the pile. Ditto to what everyone else has said.

I am the best friend of my LO - we met as young adults while working together 45 years ago. I know/knew her entire family - children who were in junior high and her parents. About 30 years ago I moved across the country and don't see her as much as I'd like, but I keep in touch by phone AND I have extended visits with her - just her and me, two weeks, 24/7, so her sole caregiver/daughter can get some respite and take her family on vacation, and another 5 days to "visit" when she has little contact with anyone except me. Everything the other posters said is true - you don't see the real goings on until you are there for an extended period - paranoia, anosognosia, conflation, repeated questions, hide-and-seek, losing / misplacing things and blaming others, apathy, loss of executive functions, etc. The list goes on and on. This past trip I woke up with a headache and went to bed with a headache, so stressed out. I was so relieved when I boarded the plane to come home, but when I landed at my stopover, there was a text from daughter asking if I knew the location of LO's ipad. I ended up calling multiple places where it might have been "lost" only to find out she had removed it while I had my back turned for two minutes, and then hidden it in the car.

We don't mention Alz or dementia, everything is "old age" (she is now 79). A few months ago, she asked if she were 88 or 98 years old, I said: gee, I don't know. Then she said it must be 88 because 98 is too old, and I said: sounds about right. No arguing or correcting. Fiblets, tiptoes, constantly on guard.

My LO is stage 5/6 and doesn't remember how we met and probably would not remember me at all except that I am a constant presence in her life; she wonders where in the world I now live (she has been to my house at least five times).

Kerstin, I don't know what type of communication you've had with this friend of yours, and you didn't mention what stage she's in. I am posting this very long comment so you are prepared for whatever you find, inasmuch as we both are "friends" of PWD and long-distance.

To the care givers: you are warriors and heroes. I don't know how you do it.

kerstinfromgermany

https://alzconnected.org/discussion/comment/191576#Comment_191576

Thank you very much for your advise. You are absolutely right. This visit has to be all about my friend and not about my feelings and the grief of loosing her and the life we have known so far. Thank you and best regards!

kerstinfromgermany

https://alzconnected.org/discussion/comment/191586#Comment_191586

Thank you very much for your helpfull answer. I will talk to her niece to get a more complete picture. Then I will allow myself a couple hours to process the information and calm down before I will go and meet my friend. Thank you for your Support! Best regards from Germany

kerstinfromgermany

https://alzconnected.org/discussion/comment/191598#Comment_191598

You are right, this is all about spending some pleasant time and making my friend feel loved, happy and respected the way she is. It is not about me and my pain. I will keep your advise in mind. Thank you and best regards from Germany

kerstinfromgermany

https://alzconnected.org/discussion/comment/191626#Comment_191626

Thank you so much for this intimate insight. This helps a lot.You are such a good friend to your BFWD, I really celebrate you for this. And it gave me an idea of how I might be able to handle the situation and even be helpfull to her niece. Thank you and best regards from Germany.

kerstinfromgermany

https://alzconnected.org/discussion/comment/191583#Comment_191583

https://alzconnected.org/discussion/comment/191583#Comment_191583

Thank you very much for all of the very helpfull information. It really made it much easier for me to process and understand the situation and many of my friend's new ways of acting and talking. Underneath all the irritation and confusiont she is still my dear friend for 35 years.

JDancer

Kerstin,

I'm so glad you found this forum. You did such a good job of processing a lot of information, quickly. Your friend is fortunate, you sound very supportive.

mommyandme (m&m)

How’d it go?

kerstinfromgermany

https://alzconnected.org/discussion/comment/192796#Comment_192796

Here is a report for everyone who helped me so incredibly to cope with the situation. Despite the changed situation, I was able to spend 10 wonderful days with my friend. In fact, I very often had the feeling that my dear friend was still in front of me and only now and then did it become clear that she was in a different reality or didn't remember important things from her own history. But I was very relieved that she is still herself, as I have known her for 35 years. We had some good conversations about her health and what the future might look like if she stays with her niece. I hope that these conversations will give her some emotional security even if she doesn't remember the details of the conversations.

Although she is very lovingly cared for, her niece's lifestyle is not very helpful in slowing down the progression of dementia as much as possible. A helpful lifestyle with plenty of daylight, fresh air, a healthy diet, exercise and mental stimulation is unfortunately not provided at all. I fear that this will lead to faster progression, which could possibly be delayed. I don't know whether I can have any positive influence on this situation from afar. I will at least try to visit her as often as I can financially. All speculation is surely useless, I will probably just have to wait and see how the disease develops and then work with the situation. I would like to thank everyone here once again for their support and help!

Best regards from Germany 💙