Being in my mid eighties , I find more and more that former colleagues, old friends and relatives have someone in the family with dementia. I can understand that people get dementia. It's a horrible condition which robs people of normal functions. It's extremely stressful for family as they go through the challenges of looking after one.
One thing that bothers me around dementia is the conversations we have or don't have about the condition. Some people are in denial and don't want to talk about the situation. Other people don't want to talk about the dementia patient in front of them as it may be very confusing for the patient.
So unless there are situations where relatives and caregivers can communicate without the patient in attendance, much needed communication is not done.
You hear from people that they feel so alone as they care for someone with dementia. It's very sad.
I have a friend who has yet to tell me that his wife has dementia. This dance has been going on for more than 2 years. I hear bits and pieces from relatives and friends.
So my question is, how do we communicate and support the caregivers and family of someone with dementia? How do we talk to someone with dementia when it progresses through it's many stages?
My father had Parkinson's. I can tell you that regular people have great difficulty when it comes to dealing with somebody who is irrational.
Thanks for this post my friend. We have not a confirmed diagnosis yet but indications are for my wife to be suffering a form of dementia.
ReplyDeleteKeep in touch
Deletegood on you for raising this topic, Red. I think that when people have a new diagnosis they don't always want to talk about it and then as time goes on maybe they forget what they have said and to whom. I wonder if your friend is like that?
ReplyDeleteI have seen some short videos talking about ways to manage people with dementia and I expect there might be a lot of information out there if we go looking.
I'm noticing some issues with my dad but it's still at a stage where I'm not sure if I'm making things up. I expect he will be seriously incapacitated before he admits there is a problem and it is impossible to help a person who wont be helped
Yes, many people would deny the condition and so are hard to deal with.
DeleteThe Alzheimer’s Association in the US is very helpful with many resources. I would recommend looking for a Canadian Alzheimer’s Association.
ReplyDeleteThanks for the tip.
DeleteIt is difficult.
ReplyDeleteDo you remember Michael Ignatieff? His mother told him that it was like walking in and out of a fog.
Pirate is now going through that, but instead of a slow decline it is happening fast..a shock to both sides.
What people are only just beginning to accept is that you grieve for someone twice. Once when you lose who you know, and once when their body dies
We certainly lose someone who becomes irrational. It's a very tough journey to be with someone going through dementia. It's difficult to get help and help is difficult to use.
DeleteOh gosh... Red. It's very hard... very, very hard. My mom is almost 95 and dementia seems to be progressing faster suddenly. It's scary. She forgets she told me something within minutes and we now have to prepare all her meals and keep her away from the stove.
ReplyDeleteFriends were just texting me a minute ago about mom. Sigh...
I wish you all the best on this journey. You do have some family to share the load.
DeleteIt does make all the difference!
DeleteDementia is a scary disease, both my father and his mother had it. I worry it may be something I inherit. Take care, have a great day!
ReplyDeleteI hope dementia does not come calling on you.
DeleteTwo of m very dear friends have dementia. Both live a long distance away - one in the Netherlands and one in the South of this country. Coping with a dearly loved partner must be so hard. One is a musician and four of us played Brandenburgs together in the evenings. Now, sadly, he remembers nothing of those happy times.
ReplyDeleteThe partner can change greatly. My friend's husband didn't know her and was going to kick her out of the house.
DeleteIt's very hard to talk about because often the people coping with memory loss refuse to believe they have it -- and get quite defensive if you bring it up. I saw this happen in my own mother. Fortunately she was cheerful in her dementia, but some people get quite angry.
ReplyDeleteThere are patterns but mostly each individual is a different case.
DeleteRed, I can’t wait to see how some of the other regulars answer your question, “How do we talk to someone with dementia when it progresses through its many stages?” The reason I’m so interested is related to an event that happened to me last summer when, out of the blue, I received a phone call from an old friend I hadn’t heard from for a long time. He could barely talk on the phone. He said he was starting to have cognitive issues and, for example, had lost the contact between brain and fingers for typing … to type an email he had to use one finger, typing one letter at a time. Wow, I sure didn’t know what to say to him. What are your suggestions? John
ReplyDeleteTalking to someone with dementia is difficult because things don't make sense. They are irrational. I am thinking more of conversations with caregivers.
DeleteI don't know anyone in this stage, but my dad got there. He could have been worse, I suppose.
ReplyDeleteI sometimes worry about foraging around in my head for nouns. I usually get there in my own good time, and I still know when I have lit on the wrong word, even though the right one may still elude me.
Ironic that you should mention this now. I'm watching my husband having lapses of logic. It's frightening. Terrifying. I'm not sure where it is leading, but the one thing that I know for sure is that it is very lonely. I have no one to talk to about my fears. Since it isn't always evident, some people don't even see it and are quick to pooh-pooh me and assure me that everything is just fine. But...sometimes it just isn't.
ReplyDeleteWhen does one go for a diagnosis ? What good does a diagnosis do? It's difficult to talk about and then people are reluctant to talk to you. They feel like they may offend you.
DeleteIt is a shame people are in denial. There is much help these days. There are drugs to ameliorate it to some extent. I'd want to know and be prepared. My dad had dementia and delirium at the same time. The ER doctors didn't figure out the delirium (a UTI) and blamed his symptoms for that on the dementia. sigh.
ReplyDeleteMany diagnoses are faulty.
DeleteWe have a family member with dementia who is being cared for by a family member of the same age. She refuses help and is reluctant to discuss the situation. He is beyond discussing the situation now. How to help is a tough question.
ReplyDeleteIt's a challenging situation with few patterns. I guess irrationality is not predictable.
DeleteI feel like I could write a book on this by now, and I am only dealing with one dementia patient, my mother! Regarding communicating with the family of the dementia patient (if you cannot talk in front of the patient, and the patient is always present), I wonder if you could email or write a letter. Those could be read when convenient for the caregiver, and then if they have your phone number they can call you when they have time away from the patient. (I would have suggested asking the caregiver to go for coffee with you, but so many times there is no chance for the caregiver to get away alone.) If you feel comfortable offering to visit with the patient or take them for coffee while the caregiver has an hour or two to himself or herself, I know it would be appreciated greatly.
ReplyDeleteAs for talking to the dementia patient about their condition, I would follow the lead of the patient. Some people, especially in the early stages, want to know why they are having problems. At this stage they can still remember they are having issues. It is helpful to reassure them that you are still their friend and will stick with them. Other patients are in denial at this stage. At later stages, the denial isn't really denial, as they can't remember that they can't remember. They truly feel they do not have any problem. It is someone else's fault they didn't know about an appointment, it is someone else's fault they forgot to do something - everything gets explained away. This makes it hard for the caregiver to get help doing anything for the patient. The patient doesn't understand why there has to be other people around to do things they think they are still capable of doing. It takes creative storytelling (also called therapeutic fibbing) to explain to the patient why things are different (eg. for my mother, who now has VON nurses coming in twice a day to give her her meds, I said my work has gotten very busy lately and the nurses are helping me. I have to repeat, repeat, repeat my explanation. The truth is that I was getting exhausted by all the things I do for her, and having the nurses give her her pills takes some of the pressure off me, but when I tried to explain it that way, she simply said she could take her pills without any help. That wasn't true, and the "story" was better accepted than the reality).
It is exhausting to listen to dementia patients repeat themselves, and tempting to correct them if they say things that are obviously wrong, but you have to try to enter into their world and go along with things as they see them. Anything else will lead to arguments or hurt feelings. The kindest thing is to accept them for who they now are. That doesn't make it easy, but it's a whole lot easier to do it for an hour than it is to do it 24/7 - which is what many caregivers (especially spouses) are forced to do.
If you or any of your readers have any other questions, please feel free to email me and I will try to help: newjennyo@gmail.com OR you can leave a comment on my blog by clicking on the grey donkey beside my name, above. Red, It is good of you to bring this topic up and make a space for people to talk about it. The number of dementia cases have risen dramatically as people live longer and as the large baby boomer population reaches middle to old age. It will continue to happen for at least another twenty years as the last of the boomers age. It's not a good situation. We are not prepared for it as a nation - we lack both care workers and live-in housing.
I should have said to click on my name, not on the donkey picture :)
DeleteThanks. Other commenters are asking questions where they may find answers here. Some dementia people are very cunning when they deal with care givers. They can argue vigorously while ignoring the facts.
DeleteHi Jenny,
DeleteThank you for an exceptionally excellent comment on Red’s post. You've shared some incredibly insightful experiences and strategies for dealing with the complexities of caring for a loved one with dementia. Your suggestion about using emails or letters to communicate with family members is practical and shows deep understanding of the caregiver's constraints. It’s also heartening to hear your thoughts on spending time with the patient to give the caregiver a break—this kind of support is invaluable and often overlooked.
It's clear that more awareness and resources are needed to support the growing number of families facing similar challenges. Thank you for shedding light on this topic and opening up a dialogue that can help many others in similar situations. You're not just managing a difficult situation; you're also helping to guide and inspire others.
From a fellow blogger, thanks again,
John
That's kind of you to say, John. Most of what I know has been learned from Youtube videos and Facebook groups, but I can vouch for the information after having tried it with difficult situations with my mother. The good thing about this is that anyone who sees this post and comment can learn the same way - through the internet. Another ggood resource I have found is our provincial Alzheimers Association. They have an excellent helpline. They operate in the US also.
DeleteRed, you've really raised a tough one there! From my own experience being suddenly disabled, I vote for open communication as much as possible.
ReplyDeleteOpen communication is best but irrational people are not easy to deal with.
DeleteYou raise some important questions Red. Fortunately, dementia has never affected any members of either my family or Shirley's family. People either died quite young or got old without mental impairment. However, I often get reports of a friend of a friend who is 72 and with each passing day gets worse. He doesn't know where he lives, remembers none of the songs he used to sing and gets stuck in the middle of sentences. Still living at home with his wife, her retirement has become a trial of patience and anxiety.
ReplyDeleteDecisions are difficult and options scarce. A decision has to be made with an irrational patient. There or few options for housing and treatment.
ReplyDeleteMy Dad had Alzheimer's and so we watch for it in our family. My older brother now has some signs of dementia and it is difficult to see. I have 3 siblings and we all live in the same town so we can support each other through this. It's scary, tho.
ReplyDeleteMy Dad had dementia and it was very sad. I think the best thing you can do is send a note and card to the caregiver in support. Tell them you will stay at their home so they can go to a Dr appt or to get groceries or have lunch with friends.
ReplyDeletei haven't faced this situation personally but yes i have seen people suffering with Parkinson's . during my recent visit to my mother in law i realized she is also starting to have symptoms of forgetfulness ,she is in her late seventies or early eighties probably (according to what we been told by my mother as they were close when mom lived in this city in her youth)
ReplyDelete