I feel either that I am failing or that I want to quit

Grandx7

Many questions - I understand that nothing is normal any longer - there is no normal.  DH has MD and the FTD changes things up completely.  He is frequently angry with me but can't articulate exactly why he is angry.  None of the food or meals I have prepared for the last 43 years are to his liking and nothing I suggest sounds good.  He eats lots of sweets, carbs and sugar drinks and has gained weight and his pants don't fit him properly.  He was always so trim and fit and never gained weight.  He is upset that his clothes don't fit and it wouldn't matter except that even his jeans are too tight.  I am in the process of buying bigger pants and replacing them in the closet without telling him.

We have not made the diagnosis common knowledge and I would like to know how to go about this with friends that call him occasionally and DH is not able to stay on track with the conversation.  All family is aware of the situation but he has people he calls to go to lunch or coffee and then he forgets about the appointments.  If I hear the call, I put it in my phone and remind him, which irritates him as well.  I am told I treat him like he is a child but I tell him I just love him and want to help him as I have done all of our married life.  This falls on deaf ears.

I won't quit but it gets so hard being the punching bag for him that it's just difficult to get through the day.  And I don't handle the lack of hygiene well at all!  I know it is part of the process but it is one of many difficult parts of the process.  We have been invited to travel this next spring but the thought of traveling across country with him, potential bowel accidents in a plane or hotel or restaurant and his constant crankiness is not very appealing.  At times I feel like I just need to put my big girl panties on and deal with it as he is only going to get worse, but then, it's not pleasant when we are in our own home and he can go to bed at 7 and on his own schedule.  

I appreciate any input anyone may have.  

Buggsroo

I can really relate to this. My conversations with my husband are circular, annoying and come back to the original subject.

He only takes a shower if I prompt him and then I hang out and supervise the procedure. I now wash his bum and his privates. He laughs when I do. I think he likes it and giggles. I will take it. He tries to help me around the house but sadly he screws everything up. However, I am touched he is trying.

As for travelling, that could be a catastrophe waiting to happen. My hubby likes his routine, even though I am quite bored at the sameness.

My advice is to perhaps switch out your thinking. Try to be happy if he gets something right. When he is cranky change the subject. I am realizing now that arguing with a 77 year toddler is not a good idea. I know it seems so unfair that the caregivers have to make huge changes in their life, but the person with dementia will not be able. Try to give yourself some time to yourself. My husband watches Erin Brockavitch on Netflix, daily. I, frankly would prefer to stick needles in my eyes, but each to their own.

loveskitties

If you have the email address for the friends he makes "dates" with, you might just send them a short message about the situation.  You might also ask that the do the "reminding" when possible with a quick call...are we still meeting for lunch today at noon?  kinda thing.

Travel is a tricky situation for dementia patients...while they may say they would like to go, they often will become confused and agitated with new people and surroundings.  Not a good idea to be many miles from home with the LO then.  It is particularly difficult with restrooms in public places unless they have a "family restroom" or a "mommy and me restroom".

Sweets and carbs seem to be "normal" with dementia patients.  You have the right idea about replacing pants without telling him.  Don't forget about the t-shirts and underwear if needed in larger sizes too.

Hygiene issues is also a common problem.  We think they either are doing it because they say they are or we assume because we tell them to do it they will.  Taking a proactive approach...now is time for a shower...let me get the water just right for you...let me have your clothes for the laundry...type thing.  It is hard to get in the habit of directing our LO in even the simplest of things when they were recently so capable.

Hang in there...am sure others will have more suggestions.

Grandx7

Thank you for the help.  Is it ok to tell his friends or am I defying a confidence.  Those close friends I have told had already suspected something was amiss.  He frequently misses calls and never retrieved text message.  I ha e to get most phone numbers on the phone for him.  When I try and set up the shower, he gets angry with me.  I know he’s so frustrated as he has lost the ability to find the words he needs to convey an idea or ask questions .  It’s brutal on all sides.  He’s angry with me yet he doesn’t want me out of his sight.  He’s my 74 year old boy and it just breaks my heart.  It seem like it’s going faster now- the decline.  Big difference the last year!

RobertsBrown

Tell the friends.

I did, and it is hard to do, but friends will appreciate the heads-up.  The real friends will surprise you, and the 'buddies' tend to fade away quickly.

This thing only goes one way, and soon enough it will be obvious to the most casual observer.

You may discover you have some support you didn't know about.  Some people really step up when they see the need.

Crushed

No one has the right to torment a caretaker with a demand for both confidentiality and personal care services. No One

I made this clear to DW when she still was competent. I would try to respect her wishes but  she was not in control. I would tell people on an "as needed" basis. 

It reminded me of my daughter telling me in Kenya "don't tell anyone we are tourists"  I saaid anyone who looks at us KNOWS we are tourists.

 .

Ed1937

More than likely these friends already know something is going on. Tell them what it is, and ask them not to mention it to him. Once they know, they will not get the idea he is "blowing them off" when he forgets or answers inappropriately.

Instead of telling him about appointments, try "I was going to (whatever today), but do you have a dinner date with Joe? You will still be reminding him, but you won't be telling him. That might work a little better.

He probably won't remember about the invitation to travel. Get in touch with the other party, and explain that it would be better for both of you if you politely refused. Again confidentially. Or find a reason why you can't travel. As an example, my wife wants to visit her mother or grandparents, both gone for many years. I tell her I can't travel like that anymore because I have to keep my medication between 38 and 42 degrees, and there is no way to do that when traveling. This is not exactly true, but it is accepted by her. So that little fib works in both of our favors.

You are doing things right when you say you'll replace his clothing without his knowledge. We just have to do whatever it takes to make our job a little easier.

caberr

I found telling our family and friends about DH diagnosis helped me to accept what is happening.  It was a relief.  Some friends still call and come around or invite us to their house for dinner.  That is tricky but they are all understanding and tell me to relax that all's good. 

I guess I'm lucky he is ok with people knowing.  He has even told them himself by asking me in front of them "what do I have?"  

Rescue mom

I told people about my DH Alzheimer’s Dx. It was obvious anyway, after anything beyond a “hello”  he wasn’t functioning or conversing  normally. I though it was better for people to know why,  than for them to have unreal expectations, or speculate about what his problem was. There was never a negative response.

My DH also prefers and eats more sweets. I have to switch any/all clothes—for fit, stains, tears, whatever—without telling. He refuses to get rid of anything, but if I do it out of sight, he never notices.

As for travel, he became uneasy and agitated in “different” places, even places we’d been a lot. Even before his meltdowns, I could not do everything and be on constant high alert.  He couldn’t be left alone for a moment, nor could he do even the things he normally did at home. It was exhausting, physically and emotionally. When friends went, that helped early on, but that didn’t happen much. (Not fun for friends). Then he became too upset regardless.

FWIW, I was on a plane last month with a lady with Alzheimer’s had a major meltdown after boarding. Her poor husband kept saying she has Alzheimer’s and “we fly, but she’s never acted like this before.” Several people noticed her odd behavior in the gate crowd before boarding; I figured she’d settle down, but she got worse.

It took security and medics to quiet her, but they stayed on board. (Somebody closer said  she got some meds.) . It was terrible to watch, the couple was so upset, and some passengers were more worried about missed connections because takeoff so delayed. Just awful all the way around.

Paris20

I told close friends and immediate family about my concerns well before my husband was officially diagnosed by a neurologist. I explained that I was starting to worry about some of his behaviors and conversations. I told them when we saw our primary care physician and then, months later, after the neurologist told us that my husband was likely to develop Alzheimer’s. Within a couple of years, it was official. By that time everyone expected it. I think it’s important to keep close family and friends apprised of what’s happening. My husband still thinks he’s fine but I need their support.

Grandx7

My DH tells me he has memory issues, a “stupid “ brain and that his brain is going to kill him and sees this in his dreams. At the same time, he feels he should not have any changes to his activities, hobbies or all that he has done his whole life.  As all know, it is a daily struggle.  With the FTD, it is a good day if we can go 4 hours if he’s not angry with me.  From the comments above, I will do all to eliminate the cross country trip.  Telling friends sounds like the correct thing to do.  I just struggle with being able to keep it together while doing so.  

Today’s struggle was him venting about feeling like I have removed his ability to live normally -  hiking and hunting as he’s done most of his life and he sees no reason for this to have changed. He asks why he can’t do these alone and I fall into the reflex response to explain the doctors have said his diagnosis, he can’t be alone.  His hunting buddies are aware of the diagnosis. He actually told one of them and now he doesn’t want to have him around.  In his mind, one of our kids and I are the bad guys who have ruined his life.  Next battle is getting the car away from him.  

I will also be shopping and replacing his pants.  Wow, it just keeps getting harder - daily.  I get asked about once a week if the doctors have told me how long he has to live.  I’m exhausted and look and feel like I’ve aged 20 years in the last 12 months.

Jo C.

Hello Grandx7; having had a Loved One with the behavioral variant of FrontoTemporal Dementia which it sounds as though this is the type of FTD your husband has, I completely understand the challenges you are facing.   Someone once told me that FTD is like Alzheimer's on steroids.   This is going to be along Post and I apologize in advance for that; there is a lot to present.

It is difficult because our LOs with FTD maintain their memory until far into the disease; my LO until near the end.  This is why the MME Test is not effective to use with a person with FTD as it is for a person with Alz's.  While their  judgment and reasoning is badly, badly compromised; they can still perform a lot of their executive functions which makes for much mischief.   Important advice if you have not already done so, is to safeguard your finances from him.   Though he can argue with you and hold conversations, he is no longer, as said, able to use adequate judgment and reasoning and the abrupt "wanting" of this or that or another thing can override so much and cause constantly having to intervene as quietly and evenly as possible.  Impulse control is lost and they want what they want when they want it, and filters for behaviors also begin to disappear to one degree or another.  The use of "therapuetic fiblets" eventually becomes useful and is a kindness to our LOs. It keeps meltdowns from happening and also gets them to appts, and often gets other things accomplished.   Fiblets are a useful tool in the caregiver's toolbox.  It was hard for me to use such fibs at first until I found they were indeed a kindness and prevented some of the agitation and harsh resistance to necessities. 

When a person has the behavioral variant of FTD, there will be no empathy or consideration for anyone else; for most, there is often a constant heightened irritability and often, outright agitation.  Acting out is often done against the person doing the most for them.  Even though we know it is the disease; it can often still hurt.  Change is not accepted readily and that component worsens as time goes by.  Routine and structure to their day is important despite their own constant abrupt changability or fixations.

It is not unusual for a person with FTD to develop food fixations.  The craving for sweets and carbs in large amounts and persistently is one of the features one can develop; this is difficult to control and often is not very controllable.  Weight gain does become an ongoing issue in such a case. In my LOs instanace, it wasn't food craving, it was food fixation and eating only certain foods and declaring fresh foods as rotten, and at one point demanding to eat only a one lettuce leaf and a cup of green tea as a main meal, then all meals.   So; food can become an issue in different ways for different people with this diagnosis.

There will be no insight into themselves; this is called, "anosognosia," you may want to look that up and do some reading on that dynamic.  It is not at all unusual for the person with this type of FTD to begin to have rigid false beliefs - these are "delusions."  Do not argue or try to persuade a person away from their delusions; they are as real to them as the chair you are sitting on. If the delusions can be easily addressed or are pleasant delusions, no big deal. If they are, however; dreadful, causing upheavals, etc.; if all lesser measures fail to address them, there are medications that the dementia specialist can prescribe that can be very helpful.  It IS important to have a dementia specialist in this disease; the average primary care MD who is so good at so much is most often not on the cutting edge of the in-depth dementia dynamics in such instances.

Losing interest in some things is par for the course; refusing hygiene is another hallmark of this particular disease.   That was a challenge that had me constantly finding ways to assist when bathing was forbidden at all, and hair washing - omigosh; weeks until it could be done.

It would be a good idea to go to the site, for the association that has been the primary site for FTD, you can find it at:  https://www.theaftd.org/    When you get there, go under the prompt for, "What is FTD," and then scroll down to the prompt for, "Behavioral Variant." 

It is important to know that while many symptoms are listed, no one develops all or even nearly all of them and our LOs may develop some behaviors that are not listed. 

As far as letting others know of this diagnosis in confidence is acceptable.  He is changing and I am willing to bet that others may have well picked up up on his changes and unfortunately, some of them will just think he is being a,"jerk," and would be served by better understanding.  It is also true that some of the people who were "friends," may begin to withdraw and back away. There are many reasons for this, but I found it dismaying and sad that close friends could not even make a call much less visit even when invited for coffee and cake.

If you learn to not argue or try to point out error, etc.; when he makes an accusation or statement, it will prevent agitation;  try to validate his feelings, not his words.   Sometimes this means having to fib a bit or to accept blame for something you did not do.  My LO always thought I stole her handbag, or stole her bedspread, etc.   I would validate her feelings, "Oh; I am so sorry your purse is missing, I understand; I would be upset and angry too.  I think when I was cleaning I accidentally moved it; I am sorry I did that.  I will find it and will not do that again." (Even though I never touched her purse.)  After validation of however you do it, then refocus him onto something else right away whether it is looking out the window at something, getting coffee and cookies for a snack, a small chore, or with an announcement about someone you know . . "Oh hey; guess what, so and so's daughter is going to have a baby!"  You get the idea.  My LO became so horribly delusion driven that the Neurologist finally needed to prescribe medication as my LOs very quality of life was being affected. Imagine believing all the false items and FEELING them too; it was a 24 hour issue for my LO until treated.  The med did indeed quell the delusions and also helped ratchet down the dread over the moon behaviors.

My LOs  journey with symptomatic, diagnosed FTD lasted eight years.  However; when I look back, I realize there were many changes for a few years before that and I just thought it was her being her as she was a bit complex; now I know better.

As for driving; get the doctor to be the bad guy and write a prescription for not driving, and have the doctor report your DH to the DMV; he may well should not be driving as his judgment, reasoning and reaction time is in all probability, already compromised. If he is in an accident and he is sued, the medical record will be subpoena'd and there it will be:  FTD and him driving.  One can lose financially in a lawsuit; better to have the license pulled as necessary.  He will NOT be happy, and he will probably act out about it - that is simply noise and it will pass.  Eventually.  But you will be safer on multiple fronts.  As it is, you can make a confidential report to the DMV.

There will still be some good times in between the challenges; it is however, always best to have a "Plan B," for what you would do if things changed and that can sometimes happen quickly.  Knowing what services and alternative living facilities are available and acceptable far in advance of need can be very helpful.   It is like insurance; you may never need it, but if you do - well; there it is. This will keep you from having to run about under time constraints and pressure trying to find that help.

Also; (gosh I have been too long), there is also help from the Alzheimer's Assn. Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very kindly supportive, have good information and can often assist us with our problem solving.

I send best wishes your way; let us know how you are doing, we will be thinkng of you and we truly do care.
 

 J.