What can I expect?

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M

Mapotter Asked April 2020

What can I expect?

Three years ago, I mentioned to my Internist that I was concerned about my husband’s memory. The doctor (also my husband’s) said that when my husband recognizes the problem, we can come in together to see him.

For the following two years, I took care of my mom until she passed away last June. (Sad day.) My husband’s short-term memory issues continue to flared up every now and then. I somehow figured after Mom passed, I would be taking care of him.

Fast forward. I saw my doctor a few months ago. I told him, again, what my husband was doing and he said that it does not sound like normal age-related issues, and that he needs to make an appointment.

Some of the things my husband is doing are: Putting things away in the kitchen in places they have not been in 15 years. Then he (and I!) cannot find whatever it is. He loses things often. He gets really mad (I mean REALLY mad) when that happens. He asks the same questions in a short amount of time. I am starting to just answer the questions the same way, trying not to get frustrated. Today, he asked me 4 times if I had gotten the mail. That was after he realized after the first time, that I had already gotten it. He still asked me three more times.

My husband has finally noticed a problem — mainly with losing things or not being able to do simple things — like using a computer program that he has used for years.

I have told him about making an appointment with the doctor. His yearly appointment was to be April 13, but was cancelled because of COVID 19. Appointments are now being made in July.

Sometimes, he is fine with the memory problem — which perplexes me. How can someone can be fine one day, and have issues the next? But, I have recently realized that he has not been brushing his teeth. He also doesn’t take a shower too often, except when he is going somewhere. Now that we are to stay in our homes, except for grocery shopping, his showers are few and far between....

I don’t know how much I should say to my husband about certain things — like showering or brushing his teeth. He has always been a real “macho man” and doesn’t like to be told what he has to do. I also don’t know what to expect in the future. It really worries me. I am 63, and my husband is almost 72.

Does this sound like Alzheimer’s, or another form of dementia? What can I expect? How long can this go on? I know those questions may not be answerable, since everyone is different, but I would like to know if anyone has experienced similar things. I feel like I am the one going crazy.

Alzheimer's & Dementia Cognitive Decline Signs of Dementia Spouse

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score 1 · Answer 1

The issues you describe may certainly be dementia symptoms. The current virus situation makes it difficult to get out, but as soon as you can have your internist refer you to a neurologist. You cannot wait until your husband realizes his memory issues, he may deny it. Dementia is not a disease but merely an umbrella term used to describe certain symptoms caused by some underlying issue. It could be one of the neurodegenerative diseases like Alzheimer's or it could be a treatable condition. A neurologist can determine that. Not remembering where things were placed, his inability to complete familiar tasks (working with computer), repetitive questions about the mail are all warning signs. You say he doesn't shower or brush often... but CAN he do those things? If so, he probably has mild cognitive impairment, a possible precursor to dementia. His change in behavior is very common. He may not need a shower every day so don't press it, but does need to brush teeth daily. Oral bacteria can cause infections (See "Teepa Snow" below). What you can expect is for the situation to get worse unless its a treatable condition. A headache is not a disease but a symptom and its cause must be determined. So to with dementia. It sounds like you need to start looking for a homecare service that can give you some respite time. You cannot be the sole caregiver, you need support. The best thing you can do is to educate yourself about dementias. Go to YouTube and search for "Teepa Snow". She offers many, many videos on Alzheimer's and dementia care. Two books I recommend are "The 36 Hour Day" and "Learning to speak Alzheimer's". Having been a caregiver for my wife and now an advocate for dementia awareness, I can empathize with your plight. Have hope, get some support and educate yourself. You could call your state Dept of Aging or the 24 hr. Alzheimer's Assn hotline, 800-272-3900. Ask if there is a dementia support group in your area. Lastly, take care of yourself. He needs you.

Helpful Answer (1)

Thank you.

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score 1 · Answer 2

Mapotter:
As the world goes through this stay at home and all it contains ,you may have to wait for the professionals.
Try: put stick it notes up on cupboards for yourself (and he will read them )
calendars or white board's in private washrooms.
birthday and special occasions,phone #s on another white board in the bedroom
You can tell him they are for you ,because you can't remember everything.
FIBS ARE OK ,IF IT HELPS YOU AND SETTLES HIM
PIC YOUR BATTLES ,don't sweat the small stuff ,as long as you are both not harmed and are safe,your better off than some .
I hope this will help,and I wish you both the best of everything moving forward.
My father passed in may 2019 of dementia
My mother is now In stage 5 dementia and lives with my husband and i .
So ,it has been a learning experience that I wish on no one .
these few little things helped me get by ....

Helpful Answer (1)

Thank you. I feel for you. I was lucky that my mom, while she had aphasia — which did kill off some of the areas of the brain similar to dementia— she was not that bad. She lived to be 95-1/2. She only needed assistance in the last year and a half of her life. During that time, I felt like I had been caring for her for 10 years, though. I just think things will be different with my husband... He has no other major health issues right now. He only takes meds for kidney stones.

Your suggestions sound like like they will be helpful.

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score 1 · Answer 3

I had the advantage, in a perverse way, of knowing that either my husband or I, and maybe both, would develop dementia because so many in our family have succumbed to this awful state of affairs. Still, getting anyone to take my concerns seriously when my husband began exhibiting signs was a nightmare experience. Now that he is officially diagnosed, he has Anosognosia, meaning he doesn't recognize it in himself. As you might expect it is frustrating because we can't talk about something he has no awareness or concern about. I, on the other hand, must be vigilant in keeping him safe, be patient, and live with someone who can no longer carry on the long conversations we have shared for most of our married life, reset TV remotes, find a book he likes, or prevent him from taking the garbage out 10 times a day against our strictly maintained condo rules. He still dresses well but only wears things once. I do see changes in his personal care and as you are aware such things become a constant monitoring job. Because he only wants to be with me, there is no break. But, I realize that such a day will come and so I try and keep on, keeping on. I wish I could share some magical interventions but the truth is this is a long, sad, journey. Ironically, I felt better when his doctors were finally cognicent and accepting of what was happening--even if they don't have a solution. I have found that talking to others who share the experience is helpful, as is continually trying to educate myself on the journey. At the moment, however, the groups I've found deal mostly with parents' AD rather than spouses and I can't get away anyway. Good luck.

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Thank you for sharing your story. I feel for you.

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score 2 · Answer 4

When available after the Novel Coronavirus, he no doubt should be seen by a neurologist, who can (hopefully) rule out anything bad. But it is better to know now so, if the situation is what you think it is, YOU will be advised.

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score 2 · Answer 5

Very sorry, this doctor is wrong. Many people will never realize they have a problem. You need a doctor who will give an assessment.

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score 2 · Answer 6

You have presented a very interesting point which is one of the things that I like about this site the most. You mentioned that your husband is showering less and often only when he goes out. That is the same as my dad. The issue now with the Covid is that we haven't gone out in a month and won't be in the near future. I have tried several ways (including begging, tricking, asking, etc.) him to shower ( I am less concerned about shaving and teeth brushing) but he gets defensive and I haven't been successful. There must be a whole world full of people in my position. I thought I was alone! Good luck and try to have patience and find some humour in the situation when you can. It will keep you going for a bit.

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score 1 · Answer 7

I hope his dr finds what his specific issue is. Some of that sounds similar to what my dad has. A few years ago, he experienced a stroke which resulted in him being diagnosed with vascular dementia. Something that concerned us is he would forget to take his meds for blood pressure, bipolar, etc. We didnt know he'd had a stroke until a few weeks later when after exhausting every other blood test, they ran a CT and it showed he'd experienced a mini stroke. Dr said it probably happened during his sleep and didnt wake him up. But he is conscious of forgetting things and of asking the same we question multiple times. He has always been very irritable and even physically and verbally abusive, but he's even more so now. I dont know if it's a result of getting older or of the vascular dementia. He does take medication for it. However he still maintains his hygiene.

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score 1 · Answer 8

He definitely has something going on in his brain: dementia can be from Alzheimer's disease, stroke or Parkinson's disease. My guess - is that he has some circulatory system perfusion problems with his brain> when his perfusion is good, he has less problems with memory, When his perfusion is not as good, the memory problems crop up. Until you can in to see the doctor. Talk your husband's blood pressure and heart rate throughout the day. A battery operated wrist blood pressure monitor is probably going to be the most easily tolerated (available on Amazon). Keep a record with dates and time. Make notes of when his memory problems crop up and his blood pressure and heart rate readings during the episode. Bring your records to the doctor's office. He will be able to use these to diagnose the problem and treatment options.

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score 1 · Answer 9

I am so sorry you are having to endure this. This should not be accepted or put up with. Initially do all you can to try to help, etc., and get medical help. But here is something you must face up to. I don't care if they are turning into mental idiots or have something else wrong, if you do all you can to fix things and often you can't make new a shattered broken glass, then you have a decision to make. Are you going to put up with this for coming years of your life and be unhappy and miserable or are you worth enough to stand up for what is right? If you are being harmed, physically-emotionally-finncially, etc. - and it is destroying who you are, then you must take action and do whatever is needed to put a stop to it. Often that means they must be placed somewhere so you can live in peace. Sad but true. Not everyone is cut out to be a caretaker and even if they are, they should not have to put up with abuse and live in fear.

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score 11 · Answer 10

This sounds exactly like my husband. Now we are way passed that stage and things do not get better. The only way my husband will take a shower is if I get one with him and I literally have to wash him as if he were a 5 year old. Its hard to say how long each stage goes on because as you have heard everyone is different. He was diagnosed about 5 years ago when he started losing things and putting things in the wrong place like milk in the cabinet and cereal in the freezer. He stayed at the level your hubby is at about two years and then started doing less and less for himself. He can't make a bowl of cereal or feed the dog like he has done for the past 20 years. He only recognizes people that he sees all the time but can't remember their names such as our daughter. He now in the past 3 months has decided that he needs to be somewhere else and starts out walking. If he goes around the block he passes the house not even recognizing it. Now i can't let him out of my sight as he will get lost. I have had to put two way deadbolts on the doors so you need a key on both sides as he gets up in the night and tries to leave. Those locks are worth their weight in gold to give me peace of mind. As far as answering his questions over and over just treat them as if he only asked you once. If he makes up crazy stories just agree with him because these thoughts pass and on to the next. When my husband starting putting things in the wrong place I no longer let him drive. We had two cars and I sold one so I tell him I love to drive and anywhere he wants to go I will take him that way we can be together always. The road won't be easy but be thankful that you are the caregiver and not the reverse. Be safe and enjoy the little conversations that he does remember as this too will fade.

Helpful Answer (11)

Thank you. I appreciate knowing what you went through/are going through. I feel for you. I know it is not going to be easy, if it is what I think it is.... One good thing is that last year, my husband registered with the VA, so that is all taken care of.

I mentioned to him last night that we need to get some legal things taken care of — like POAs for both of us. I am also thinking ahead because if something happens to me, he will not know what to do. Both of our children live in different states.

To top all this off, we have 2 geriatric dogs...

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score 2 · Answer 11

Check resources through the Alzheimer's Association. They have some wonderful references for information and support and for caretaking tips that are helpful whether or not the diagnosis is Alzheimer's. Take advantage of online resources and information during this time of restricted public access.
It does sound like your husband has some form of dementia. You will need to take on more and more responsibility for managing his safety and hygiene.

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score 2 · Answer 12

I think you need to 'shop' for a more helpful doctor and an elder care lawyer.

I the case of my parents, both in their 90s, were cooperative in my search, although my dad was somewhat attached to their (unhelpful) doctor, because of the doctors history as a missionary. I finally chose a doctor who was attached to the hospital they often used when they had a medical emergency. (That doctor was what you might call a hospitalist, but also had a clinic attached to the hospital.) My Dad was clearly suffering from dementia, but my mother only had minor short term memory loss. Mom 'passed' the Mini Mental exam, but she had prepared, remembered the day and date, etc. However the doctor knew from her previous history, that Mom could not, would not take medication as prescribed.

I retained an elder care attorney who represented me at probate court to have me appointed guardian and conservator. I chose him based on referrals from other attorneys. Later, he became less helpful, and I chose another one, primarily because he had a mailbox at the probate court.

I know that the Covid 19 pandemic makes shopping harder! Good luck.

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score 3 · Answer 13

Go to www.nelf.org to find a certified elder law attorney in your area.

Please do your research on the attorney. We went through finding one a year or so ago and found that many, many unscrupulous attorneys are claiming to be elder law attorneys, they can sign up at NAELA as an elder law without any qualifications or special certification, it is terribly misleading and costs people money and a sense of security. Please find a certified elder law attorney, we found that they were cheaper because it is what they do day in and day out. I am talking 10k cheaper than some "elder law" attorneys we interviewed.

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score 2 · Answer 14

I just read the replies and I appreciate hearing them too. When I looked for an attorney I couldn't find one under Elder Care. I'll try again.

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score 6 · Answer 15

It's terrible to be wanting answers and can't get any. I will add that my mother had an online doctor's visit recently that went well. I sat it up and it saved her from physically going to the office. But, the doctor was her long time physician. I'm not sure how it would work with a new doctor or getting a mini mental health evaluation. You could inquire about it though.

I would prepare myself for anything though. By the time my LO (cousin) got to the doctor. ( I insisted and took her.) Her primary diagnosed SIGNIFICANT dementia. She bypassed the cognitive decline phase. Or, she hid that phase pretty well. She was only 62 years old:(

My father has had 3 mini mental health evals over the last few years. I was present for one of them. He does really well, though, we have become concerned about some of his memory issues. He is excellent in math, drawing, word puzzles, hygiene, activities, etc. and it reflects in his test, but, IDK....I still wonder about some things. His MRI showed normal. So, I would be prepared for anything on the eval. I guess the important thing about a diagnosis is that if it's a condition that responds to medication, that would be an option. Some people say that meds help in the early stages, for some types of conditions.

I'm wondering why your doctor said that your DH needed to recognize a problem with cognition before doing eval....hmmm.....because, why does that matter? Most people who have dementia, don't know and do not have the ability to accept it. And, even if they do accept it, they forget about it. So, their ability to understand what they have seems to have little benefit. I suppose it could help him get his affairs in order. Does he have Durable POA, Healthcare POA, Advance Medical Directive? I'd work on that.

If he's not taking care of hygiene due to dementia....he'll like continue and it will be a chore to get him to do it. Later, people may be more cooperative as they become less aware. I'd read a lot and see an Elder Law attorney about asset protection and your rights and obligations. See your own attorney who can advise you what's best for you. One who represents him, can't tell you that. Most attorneys are consulting right now by phone or skype.

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Thank you. I often wondered why the doctor said to wait until my husband recognized there was a problem.... But, I guess I don't have to worry about that anymore.... :-/

I also wondered about an online dementia evaluation. I figured he would be given one of the written tests in the office.

Tonight, my husband did tell me to remind him to shave.... That gave me the opportunity to say something about showering and brushing his teeth. When I told him he has not brushed his teeth, he said, "Yes I have." Then, he looked in the mirror and said, "Oh. I have gotten out of my routine." I think he has neglected his teeth for a few months now.... I only recently decided to check his toothbrush and re-position it so that I knew for sure.

We'll see what tomorrow brings....

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score 7 · Answer 16

What you are describing does sound very much like some form of dementia. This is exactly what we went through with my dad starting about 10 years ago. My dad always refused any testing, claimed he was just fine, just getting old and memory not as good, but it was very clear his behavior was beyond just basic old age problems.

His doc said he showed all the signs of Alzheimer’s and I learned to deal with it. Couldn’t try to reason or convince him of anything, just had to go with the flow, try to not upset him.

He is now in a nursing home with fairly advanced dementia.

I hope this is not the case for your husband. You can research dementia and how to cope with it on this site. I learned a lot using this website.

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Thank you. I appreciate your reply.

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score 1 · Answer 17

First of all, I am sorry for the loss of your mom. I would be concerned about your husband and it is so sad that he cannot go see your doctor at this time. Are there doctors that are seeing anyone online that you know of? That is the only thing that I can think of to help at the moment, Others will chime in with answers for you so stick around. Best wishes to you and your husband.

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Thank you for your reply. Our doctor is seeing patients online for follow-ups only.

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What can I expect?

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