Is it forgetfulness?
What are spatial issues? What are cognitive issues? Who decides?
Did you know that most patients -- I assume myself one day will be included -- understand they have cognitive issues but don't let their doctor know and can hide most symptoms quite easily.
There is a Chart of 10 questions that can be asked:
However. Who follows this? Who asks? Certainly if the doctor asks the patient, the patient will rarely admit that he/she cannot complete the list.
In the past 4 weeks does the patient have any difficulty or need help with:
1. Writing checks, paying bills, or balancing a checkbook.
Hasn't been able to in 5 years.
2. Assembling tax records, business affairs, or other papers.
Hasn't been able to do in 5 years.
3. Shopping alone for clothes, household necessities, or groceries.
Mute point, cannot drive, hasn't driven in over 5 years.
4. Playing a game of skill, working on a hobby.
Gets lost in card games or any simple game. Frustrating. Stopped working on hobbies in 2017.
5. Heating water, making coffee, turning off the stove.
Doesn't understand how to use the stove. Hands too shaky to make coffee.
6. Preparing a balanced meal.
No. Unless making microwave instant oatmeal for breakfast lunch and supper is considered balanced. It is the only meal he will prep for himself.
7. Keeping track of current events.
No, doesn't follow news or read the paper.
8. Following a TV show, book, or magazine and being able to discuss them with acquaintances.
No reading as it doesn't make sense to him. TV is sometimes confusing, but it is something he will do all day.
9. Remembering appointments, or remembering to take medications, keeping track of recent conversations, recent events and the date.
No on appointments, I often remind him to take evening meds. It is a ritual so he will eventually recall or check his pill box to see if he needs to take something. Somedays are good some are not.
10. Driving, traveling out of the neighborhood, or arranging for public transportation.
No no no on traveling. He won't leave the house. Last time he left the house was for his mom's funeral and a blood draw. He hasn't driven in 5 years and will not answer the phone or make phone calls unless it is my cell phone number.
So what is the scoring for this?
Let's see the score guide.
0 Can do this without help.
1 Have some difficulty, but can do this without help.
2 Need help with this.
3 Can't do this.
0 Never did this activity.
How do you address these issues?
What if...every question is no, but the patient feels that a balanced meal is a bagel or instant oatmeal. Since they watch programs, they must be able to follow them right?
So if I were to answer the questions honestly for my husband there is not one item on that list that he can really do. He most definitely cannot follow most programs unless they are in a standard format.
Would he be a perfect 30? Or does he get a partial point for remembering to take his meds when he eats breakfast [a routine of 30+ years].
Somehow the VA feels that since he can recall to take meds and says he can make meals and dress himself, he doesn't need their extra help.
New things that have changed since last year's assessment.
He is not aware of lack of combing his hair, or personal hygiene. He feels it isn't in his time frame and doesn't want to do it. It results in a rather intense argument when I bring it up.
He can't use a knife to cut up things like apples, peaches, pears. I have to do it. He wants to go outside to do yard work, but spends about 20 minutes looking out the door and then goes for a nap.
He can dress himself.
The only way I can get him to put on clean clothes even if he won't bath, is to take away his dirty clothes while he sleeps and replace them with clean clothes.
I get very irritated and angry and have to constantly remind myself that this is not him being a jerk. But his mind is on another timeframe or some other universe.
It is like when I am waiting for my computer to make a connection and I get those little blue circles...and then an error pops up.
Weeks are not in his timeframe. Days are just days waiting for a nap or bedtime.
The other night he sat up at the table after I told him I was walking to the ridge to take photos.
Currently every time I get ready to go to the store or go shopping for food, he asks where and when I am going.
I can tell him what we are eating for supper in the morning and he asks me near supper time what we might be having. I give him time to recall and then tell him.
His words are still backwards and sometimes I have to really concentrate on what he means when he talks.
So. What do I want as a CareGiver? I would like some respite if it was safe to do so with Covid still running about.
I would like someone to come in once a week to help bath him. He won't fight a nurse, doctor, CNA, or other person who will ask him to wash, change his clothes, or even mild exercise.
But for me to ask, it becomes a huge issue which leads to arguments such as ... I am stealing money, I am bossy, I am a nag. Anything out of his routine of coffee, breakfast, nap, TV, nap, lunch, nap, TV, supper...is disruptive.
Thursday I'd had it up to ... there. I was done. All done in.
I considered asking his daughter to give me a break but she won't as she thinks her dad is fine and is just a drama queen.
I'm going back to the VA Caregiver program and asking for a new assessment.
I can't fight daily any more.
No worries, I am okay.
But I write this for other CareGivers so they know they are not alone in all of this.
This is a hard trail/path to follow and a person has to really seek out assistance.
One of the next calls that will be made aside from calling the VA CareGiver program, will be to ADRC to have the local county nurse come out and do an assessment of hubby's needs.
This feels like we have been forgotten and since all appointments have been by phone or video, they don't really get the feel for how he is doing or not doing.
That's it. Sorry for being so long.
