My LO has been diagnosed with mild cognitive impairment. He seems very lethargic and does not seem interested in any of his former activities. He is seeing a neurologist and is on meds for Alzheimer’s as well as an antidepressant. He can’t follow movies and tv shows that I like to watch, constantly interrupting to ask questions about what is going on, thus disrupting my enjoyment of the program. He also doesn’t really have any hobbies, other than word search, and since he dates every one he completes, I can see him slowing down on those too. All he wants to do is sit in a chair in the living room in the sun—doing absolutely nothing—no tv, doesn’t like to read, no real hobbies, and he won’t go anywhere. It is also cold here and he says he’ll be better when it is warmer outside; that’s it’s just too cold to do anything. How can I get him active again? He also used to share in housework and now won’t help me, with the chores that he used to either. He also asks me the same questions over and over again about what’s going on today. I have a scheduler on the kitchen table listing every appointment and everywhere I have to go each day. He also turns on the tv only to watch the weather over and over again, then turns it back on an hour later looking for the weather again. I know he does this because he can’t remember what he saw earlier. What can I do to help him get interested in something again? Sitting in a chair all winter can’t be good for him. I try to get him to go on walks with me, but he just says it’s too cold. He can still drive, but stays local when he’s alone. We have several trips coming up in March, April and June, and he usually does all the driving. Do I need to be concerned, as long as I’m there with him? I just need some advice on how to handle these early stages, and I want to help him feel needed and appreciated, but it’s like he’s lost all interest in doing anything.
Sounds like apathy &/or depression. I hope these signs have been discussed with the Doctor. Maybe there is some medication that could help?
Is there Parkinson's present at all? (Apathy can be present with Alz & other dementia's too but I've heard it reported alot with PD).
His comment about being in the sun.. how is his vitamin D?
Fresh air & sunshine are not a cure-all of course but do seem to make life better & a little cheerier.
Regarding your trips. Fatigue, medications, brain changes don't mix well with driving. I would ask his Doctor about it. It may be you will need to do more (or all) the driving. Meaning trips may need to be adapted to ensure you are both safe & can enjoy them.
DRIVING
The issue of driving is extremely difficult. Sometimes during testing, a physician will find that the person's spatial skills are such that they need to cease driving immediately. Other times, the family may want to curtail the person from driving because when they sit in the passenger seat while the person with dementia is doing the driving, they find their driving unsafe. One method of gradually ceasing the driving has been found to work well. A lady asked her husband once a week or so if it could be her turn to drive (her license renewal was coming up). She gradually increased the frequency of asking for her turn until she was doing the driving 80% of the time. Then she started to automatically head for the driver's side of the car whenever they walked toward the car, without saying anything. After about six to eight weeks, her husband always went to the passenger side and never again expected to be the driver. This non-confrontational approach is positive, but not always possible.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HIM that makes all the difference. As far as getting a 'proper diagnosis' goes, I'm not sure it really matters much, either, b/c there's no meds gonna change much of anything, in reality. This booklet also addresses DRIVING, and how to go about stopping it asap.
Understanding The Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.” For people to understand that reality and context as perceived and experienced by a person with dementia, is altered by the dementia; and, that their reality and context is continuously changing as the dementia progresses, requires learning and an attitude shift; it is not ‘common sense.’
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!
Wishing you the best of luck with all you have on your plate.
I would also be scared to death to let him continue driving at this point. All it takes is one false move and you could lose everything you own in a major lawsuit. Especially since you're well aware of his mental decline but yet let him drive. You may have to come up with a plan B where you do all the driving, or perhaps even fly. And worse case scenario, you cancel your trips. What's more important, you both being safe along with everyone else on the road, or chancing letting him drive and killing someone or you? Think about that.
I hate to burst your bubble, but things have to(and do)drastically change when there is mental decline in our loved ones. We can't chose to live in denial just because it somehow feels safer to do so.
Definitely read the books that sjplegacy mentioned below, as education is key when we're dealing with a loved one with any kind of mental decline. It will help you be more equipped with all that is yet to come.
I wish you the very best as you take this journey with your husband.
- watch DVDs of simple, movies with the closed captions on - she reads all of them and seems to follow the plot better. Funny Disney or Pixar movies, or old-time musicals with happy plots. No negative tv, or news (and the bar for negative is very low). She really enjoys watching YouTube videos of goofy animal antics.
- purchase a large amount of kitchen towels and ask her to fold them. This burns physical and mental energy and gives her a sense of purpose. Also colorful socks that she sorts and pairs, or organizing a deck of playing cards or colorful poker chips. If your husband was handy, maybe have him sort nuts and bolts and screws. Then when he's done, you remove them and mix them up to present them to him at another time, so keep them handy and out of sight until needed.
- my aunt remembers a few card and tile games so we play those and then sometimes she somehow "loses" the rules in her mind so we just go for it and do whatever rules that work for her and keep her calm and peaceful.
- we bought a used foot pedaler exercise machine. It's small and she pedals for 20 minutes 2x a day. Can be put on a table for working arms as well.
- consider adopting a cat or dog if you don't have one. They are lovely company, and dogs give you a reason to go outside for walks.
The driving thing is a concern. You never know when the first time will be when he will have forgotten how to react to something, or how to get home. My friend from Oakland was in South America on a vacation and her elderly mom (who was very "together" and capable) was tasked with picking up their dog from the vet, a place she'd been many times. She got lost on the way there and was lost for 14 hours. Although she was calling my friend from her flip phone she didn't think to call for help or even pull into a gas station to ask for help or directions.
My uncle (who should have been made to retire from driving) went straight through a red light and was t-boned, killing his wife and dog. Fortunately the victims in the other car were not seriously injured but could easily have been.
I would be bold and ask neighbors, friends, relatives, and other trusted people to drive him to appointments or errands. Give the driver a gift card to one of your husband's favorite places to eat so that they can go out together and give you a break. Sometimes people want to help and they just don't know how. I had great success with my aunt doing this. People were always happy to do it, and he should be social as long as he is easily able. If you belong to a faith community, this can be a rich pool of willing people, you just need to be the one asking, not waiting for help. Sometimes churches have a Care ministry just for people like you, and some have very affordable adult day care on their premises. I'd start researching this as a future resource.
I wish you peace in your heart on this journey together.
I think I figured out what might explain the Weather Chanel.
It is consistent. Pretty much the same thing over and over and over.
because of that it may be reassuring to him.. Everything else on TV changes and it is hard to keep track of what it happening. Not so with the Weather Chanel.
The lethargy might well be depression. You/he should talk to his doctor about that. The antidepressant that has been prescribed might not be working as well as it should. Any diagnosis like dementia would depress anyone.
My Husband had always been one to do things around the house, never hired anyone. I would comment on things that needed to be repaired and he would tell me..."when I feel better I will do it" this was before his "official" diagnosis and was one of the clues for me that something was wrong. He also stopped doing other activities that he had previously done.
What did he do for work? Is there a way that what he did can be morphed into Volunteering?
Is there an Adult Day Care that he can go to? It will help him to get out and get involved with activities. It will do you good to have some time for yourself.
If there is not an Adult Day Care is there a Senior Center that has activities that he would be interested in?
Take care of yourself. You are at the start of a very long difficult journey.
Learn to ask for help
Learn to accept help.
Accept the fact now that you can not do it all. You will need help. Get him used to having other people around.
During the winter, he always helped me with indoor heavy duty cleaning (wash walls, windows, painting, etc.) but hasn’t done any of it in 2-3 years. He also won’t let me hire anyone, so I’m just letting it go because I can’t do it all alone. I figure eventually I’ll be able to hire someone.
He would never go to a senior center. I’ve tried to get him to go to the gym with me, as I’ve worked out my whole life, but he says he gets all the exercise he needs on the farm. In addition to working at the Embassy, he was a tobacco farmer until he took the state buy-out 20 or so years ago, so his life has been outdoors since childhood.
He does help me load and unload cases of food at our local food pantry, as well as stock shelves during off hours, so at least that gets him out of the house a couple times a month. He will also go on walks with his daughter and adult grandchildren on occasion, if they come to get him. He has never been a real social person, but until Christmas, I was able to get him to church a couple times a month.
I think I’m going to give the antidepressants a few more weeks to work and maybe by then, it will be warmer, so I’ll see if he starts doing the outside work again.
He is on memantine and donepezil, which his neurologist insists are the best meds for Alzheimer’s.
thanks for all your help!
I would suggest 2 things for you. 1., Become educated about AD and other cognitive diseases, and 2., know when to ask for outside help.
Some excellent books are, “The 36 Hour Day”, “Surviving Alzheimers”, and “Learning to Speak Alzheimers”. Although AD is the title of these books, they address behaviors and situations common to other neurodegenerative diseases. You can go to YouTube and search for Teepa Snow. She has very good instructional videos on how to address many behavioral issues.
Can you be more assertive in getting him out of the house? Tell him you want to go for a drive and want him to come with you. Now where is the next question. Will he walk around a store OK? How about going out to eat? While these things will no doubt take longer and have their challenges, if you make a few trips out a week about doing it to be something good for him, then you can help him and get one of your errands done too.
The same questions over and over is really challenging. I just try to not get frustrated and repeat the info as if it were new. No sense in telling them, I JUST TOLD YOU THAT TEN MINUTES AGO. I'm learning not to bother explaining the details of what I'm doing and where and why etc. Because I hate repeating it all. I just give shorter answers since it doesn't really seem to matter since the information won't be retained anyways. And usually it doesn't really matter either.
Getting exercise is good for everyone. If he says it's too cold, well, if he's dressed appropriately for the weather, he won't be too cold. When it's sunny and not too cold or windy (comparatively speaking), cajole him into joining you for a walk. Tell him you don't feel like going alone and you'd really like his company.
I'd be VERy concerned about him driving you on all those upcoming trips! My mom still drives in town but I never let her drive me. I always drive. So if you have any concerns about his driving, which I think you should, you should just start driving. Come up with a reason. Tell him you really like driving and want to do it more. Tell him you're giving him a break. Whatever works but if he were driving and made a mistake he could injure or kill you both.
Did the antidepressant help at all?
Does he refuse to do chores? Or just won't offer? My mom is not a self starter at all and needs to be asked to do just about anything. Have you tried asking him to do certain chores? Give him simple things that he is capable of and that are low priority. Can he set the dinner table? Cut up veggies? Fold laundry? etc etc. Even if they were things he didn't used to do, tell him you could really use his help so could he please do X?
Will he play games with you? Simpler games like Racko, Skipbo, dominoes. Simple card games. Be prepared to give prompts. I have to answer lots of questions but my mom can still play pretty well.
Best of luck to you. And all of us in the trenches.
He doesn’t really like to go out to dinner, but on occasion I can get him there by telling him I am just too tired to cook. He prefers it if I get take out though.
He will go on a walk if it’s not too cold or windy and he loads the dishwasher every night, changes the bed once a week and makes it daily. Dusting used to be a priority for him, but that’s slipped lately, so I just let it go. I hate to dust, plus I do all the other indoor chores.
thanks for your help!