I’m wondering how many have found themselves in my position. What is it going to be like for me as she loses touch with the outside world?
We figured out what was happening over 4 years ago when my wife was 59 (FTD). Because of what she would experience, I chose to close my business and be with her 24/7. I believed that it would be important to prepare in the early stages.
Perhaps because of my personal choice, and because of the natural unwillingness to be around dementia, most relationships have fallen off. Whether or not my decision was a form of enabling is debatable, but I just couldn’t see her going through the fear and frustration, wondering if I would abandon her. I know how that sounds, bear with me.
My wife can’t understand TV, finish a thought with company, remember where anything goes, follow instructions, roll a die and move a game piece, dress, or bathe. She has occasional hallucinations, but a lot of delusions.
She’s very healthy but is losing interest in walking and has started complaining intermittently of leg pain and pain in general. Coincidentally, pains seem to appear around 6:00 at night.
But, she’s appreciative, empathetic, has a good sense of humor, can be witty, and strives to care for me when I’m hurting. If she starts to get angry, I have faked vertigo and she immediately switched to caregiver. I have snapped at her twice in the last couple years significant enough that I can remember.
But, she is very insecure around people and we have few relationships that bring her comfort. I can’t converse with people much, she gets jealous that I can converse and she can’t. This isolated me. I can only text and people don’t like to write. As a result, I don’t know what’s on the horizon.
On one hand I think I may have enabled her and on the other hand I think if I had forced things she could have spiraled out long ago.
Whichever, I’ve committed myself early on and there’s no way to backtrack or second guess.
What is it going to be like for me as she loses touch with the outside world? Is it as natural as the past few years have been?
Thank you
I guess that’s what I’m asking, how does it progress (according to my description of her.)
Is it the kind of thing where I can bring in help when she’s not aware that a stranger coming into our lives isn’t that unusual? (I messed up that sentence.)
She’s changing week by week. Things that bothered her badly are no longer an issue. Maybe she’ll just start enjoying, or at least tolerating different social settings? Does that happen?
I have not been in your exact position, but there are members here, who have. There are some kind husbands who come and post.
This being Easter evening, you may not get many responses tonight. Hang in there. More posters may be here tomorrow.
Best wishes to you and your wife.
You cannot allow yourself to be her sole protector and care provider. Nobody can afford to be indispensable.
Not conversing because it triggers her frustration at being unable to speak coherently, to take an example: bad for you, bad for her. What about working on other forms of communication? Have you allowed any therapist in to help her with that?
It is good to be her advocate and her champion, it is excellent that you are so aware of the need for her to be reassured that she will not be abandoned. But stop thinking you are the only one who can look after her. In certain aspects of managing her dementia and preserving her quality of life, you won't even be the best at it.
Her sisters and brothers are sweet as can be but let us know subtly their unwillingness to participate in her life. When it first started, I asked that they take turns inviting us once a month. I would do all the driving but they weren’t willing.
Our sons are geographically distant and one is in the military. Zoom freaks her out, she doesn’t like it.
We are rural. Very rural. Even before Covid, people really didn’t enjoy the repetitive conversation, or having to talk only about the things my wife could participate in... which of course was mostly about us and things she could remember.
I tried to explain to a pastor here that people need to know her so they don’t trigger anxiety. Back then it was hard to explain that she could not only be jealous of women, but be jealous of my ability to have conversations that she wasn’t a part of. They would only make eye contact with me and would interrupt and talk over her.
A very unpleasant experience with a psychiatrist. Doctors and neurologists that don’t use email or separate us when we come in for appointments.
Yeah, you can detect cynicism because it’s there. I love people and hate them at the same time. I have insights and observations that I believe are worthwhile and nowhere to share them. I spend my efforts making sure people don’t tire of us. See how easy it is to ramble? I need to reread your post, but I’m on a phone and am afraid I’ll lose everything if I don’t post this soon.
Also, it started so severe. Anger, confusion and frustration. Plus people telling me her personality was going to change and she was going to walk outside naked.
I was motivated back then to make hard decisions. It’s how I got on my track.
I just want to say that I am so sorry that you and your wife are in this situation. I’m sure it is terribly hard for you.
I will keep you in my thoughts and prayers. Please vent anytime and keep us posted.
There are many here familiar with this situation and will offer comfort and support.
It’s like my wife is simply going backwards in intelligence and just can’t learn anything new. Plus all the emotions of her losing memories and being aware of it off and on.
Your wife may with luck become quite friendly with one or more of them, and get interested in their lives. You can eventually use the time to get out yourself. Even this will make your wife’s world a little bigger as you talk about what you have done. You cannot provide all the care indefinitely, so this will help both of you get used to more help in a wider world.
It’s true that many ‘friends’ can find it hard to slow down to the new lower pace, of conversation and everything else. Carers do it as a paid job, where the interests of the client come first, and it can work out a lot better. Best wishes to both of you.
PS 1) About ‘reading backwards’, click on ‘oldest first’ to start from the beginning, ‘newest first’ for the most recent.
2) Click on ‘Care Topics’ at the top right of the screen. You get an alphabet, eg click on A for Activities of Daily Living. You should find something useful hidden in the huge amount of information there.
3) It can help to write out your post in a word processing package, then cut and paste to the site. The avoids the annoying experience of everything disappearing for no apparent reason!
One problem I have is that my wife has no common sense but has these bouts of brilliance and insight. She can still catch deception. She can still notice me cock my head and know that I’m thinking about something.
She is so in the moment.
Great tips about the site, I needed those! Ha, I just noticed I’m double posting and messing up editing and rewrites. Don’t know how to respond to a response.
You are in this together.
Some people with life-limiting or terminal illness strive to keep living as normal as possible for as long as possible.
I think that is a worthwhile goal. As long as striving to facilitate her best life is not at the expense of yours. Revisiting your plan often & keep adapting as you need to, keep adding more care as you need to. It is sad to watch family & friends melt away (can be ignorance, fear, many reasons). But to avoid becoming your own little island, add more people. They may be professionals like care workers, support groups, church groups, other home help.
The future is unknown. But with a team around you for support you will transition into the next stages & face whatever comes.
Hopefully I can figure out that whole bringing other people in thing.
I would suggest, if you can afford it, getting someone in "to help you ". Let your wife get used to her being there. One of the posters here spoke about a biography sheet she wrote about her mother so the caregivers knew about the client and could ask about things she had done in the past.
I would come home and my wife would be laying down in the fetal position crying. Everything that was going to happen to her was flooding her brain. That’s when I quit working.
Fast forward and I have a plethora of experiences where I’ve had to bring her back from the ignorance and insensitivity of encounters she’d had with people.
It’s so easy to remind her of what she’s lost. She misses her art, computer skills, TV programs she’d enjoyed, ability to recognize family in photographs... and so easy to accidentally trigger her.
Recently, a neighbor’s caregiver by the way, saw my wife outside without me. She asked her, “Are you ok?” Instead of , “How are you?” That’s the kind of stuff my wife retains from her long term memory. She was upset and able to relate the encounter to me.
I have so many memories of bringing her back from hurts over the years. Sometimes it takes days.
I just picture coming home to a different person than who I left them with.
But I think about it a lot. But that’s why I’m trying to find someone who can relate.
Also, when trying to find assistance (and you WILL need help, sooner if not later), perhaps it would be best to find male assistance. Since you mention that she can be jealous of women, a male aide might work better. You also want to be sure the person (or people) have experience with FTD. Initial contact should be when you are there as well. Step back and let them interact with her, not you. Keep initial visits shorter, maybe an hour or two, to give her time to get used to having this other person around. Perhaps having a photo album, to trigger pleasant memories for her could be used, so she can share them and her thoughts with him.
Sometimes it can take some time for them to get used to another person and feel more relaxed around them, so don't give up too early! My mother didn't have FTD, most likely vascular dementia. One staff member told me how she would try to engage with my mother and mom would just shut her eyes and not respond. Eventually she stopped that and really enjoyed interactions with this woman!
My wife takes Namzeric and RisperiDONE, I got the latter prescription for delusions.
Her anxiety is primarily taken care of by me. We go long periods of time as if everything is normal. Again, my protectiveness leads me to only take her around people who bring her comfort.
I don’t react to the delusions. I don’t mean to brag, but I’m dang good at this. It was such a slow process that I was able to adjust and come up with a strategy that eased her initial anxiety, fear and frustration.
I was able to teach her how to pee the other day where she wasn’t even alarmed that she got confused by the toilet.
But I see something on the horizon.
My problem is that I don’t know if I’d be skilled enough to introduce a helper. I’ve used the term enable, but I know it can be also interpreted as spoiling her. As a result, I think I’m paralyzed at the thought of what’s next. Her behaviors foretell of a dark future.
You say you feel vulnerable writing on this site. That's a very honest sentiment for a man. We usually don't like to admit that. Posting on this site does give one a feeling of vulnerability. It takes some courage to expose one's “life as a caregiver”. You've expressed yourself very eloquently. This is an anonymous forum where people like yourself do muster up the courage to share their worries, their trials, and their fears. And just as anonymously those who reply are willing to share their experiences, their insights and their heartfelt support.
What's it going to be like for you? A long list of complicated emotions, the knowledge that she'll not get better, and the worrisome future without her. I lost my wife of 52 yrs from AD three yrs ago. The old adage of “if you've seen one person with dementia, you've seen one person with dementia”, applies to the caregiver also. No one can truly tell you what it will be like for you because every experience is different. Yes, you'll feel isolated and a lack of control, but you won't abandoned her. You remember “snapping” at her and, I'm sure regret doing that. I, too, vividly recall a very insensitive remark I made to my wife over 6 yrs ago. It's what happens when we loose control.
What you can do is to educate yourself about dementia (Google “dementia”, there are a ton of resources) and know what your caregiving limits are. At some time you may have to find a care facility for her to insure she gets the care you can no longer provide. I placed my wife in a MC facility not to abandon her but to continue to care for her. So your role is to continue to love and care for her, do the best you can, and to keep yourself healthy in the process, day by day, moment by moment.
Call your Area Agency on Aging (every state has one or more) to help you navigate thru this journey.
I cried at the drop of a hat for the first couple years but haven’t cried with anyone but my wife for the last two years.
I wish I had people in my life with your sensitivity and those on this site.
Thank you
Now is the time to hire someone you can train. The two of you together can form a care plan for your wife that she can ease into, a little at a time. Your wife can get to know the caregiver and learn to trust her or him and establish a relationship. That will allow you some free time for your life and your interests, separate from the world of dementia entirely. A chance to recharge your batteries and make burn out a little further off in the distance. You owe it to yourself AND to your wife to no longer be the only person in her life she can rely on for everything. It's not fair to either of you. That burden of responsibility will break Hercules' back, my friend, and he's one strong dude 😊
We have, or had, a poster here named Oldsailor. He cared for his wife Luz who suffered from FTD for many years, at home, until she passed away not that long ago. He shared their journey in detail with us here, and had lots of tips and tricks he used when the going got tough. I remember how he touched my heart with the stories he'd tell. You can use the search bar up top to look up his profile page and read his posts, if you'd like.
Wishing you all the best of luck moving forward with a difficult situation.
I only have real concerns for the apathetic.
I appreciate a poster I read, “The greatest cruelty is the casual blindness to the despair of others”.
As far as my outside interests, I have none. In order to convince her I wasn’t interested in leaving her when she was at her most insecure, I guaranteed her that nothing was more important than our relationship. I told her the truth that I didn’t want to be anywhere else. I could convince her because I meant it. All my hobbies and interests have taken a holiday.
If I ever become incapacitated, we have two sons who are both incredibly honorable men. Either would step up or work together to figure something out.
A doctor told me a year and a half ago that I was close to burnout. I feel more capable now than I did then.
I think I can wait until she loses her ability relate with the outside world. She already doesn’t recognize me sometimes. She will still let me sleep with her because she thinks the other me is a nice guy and does a lot of stuff for her and she trusts me. We quit having sex shortly after the diagnosis.
That’s why I need to know what happens as she loses touch with reality. I can give a lot of step by step issues of mental decline and they ARE all surprises; I just maybe want a heads up on something I can prepare for.
Right now her greatest problem is boredom. I wish I had known how important that was going to be.
https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438
I’ve been there early on and found that site allows a lot of bickering.
One thing I believe is that it would be impossible to decide what would be right or wrong with how someone else has decided to live with the challenge of mental illness or dementia.
Plus there was a poster that was extremely contentious politically. Many supported him and it’s hard to communicate with people when you know they don’t respect you.
It was too difficult to navigate the site without getting frustrated.
I have no experience with FTD but my 96 yr old mom has dementia of some type and for the past 6 yrs. my siblings and I have been taking care of her because we made a promise never to bring her to a nursing home. She was in dread of one her whole life and said she would die if we ever put her in one. Over the years her dementia has progressed from where she was fearful and angry to much more docile but my siblings and I were still thinking we couldn't put her somewhere else because as you say about your wife "she is still very much in the moment." Fast forward to Covid burnout. My mom was forced to make the move and lo and behold, I think she has found herself in a better place! She is better cared for without the stresses of her kids doing it and is enjoying listening to the talk of the other ladies there. Never but never would I have imagined that.
You need some kind of a life and comfort and someone to talk to too. Perhaps thinking you are the only one who can care for her has stopped you from making a choice like getting another caregiver in to help both of you. It may help with the boredom you say your wife feels too. Eventually, we all run out of things to talk about when we are together 24/7.
This is helping me also as I explain things to all of you, I’m bringing things into focus since I haven’t had the opportunity to share with others.
My wife can’t communicate with the public on her own. She can’t complete a thought, much less two sentences in public. When we are alone, she is mostly unintelligible.
It’s like she free associates and I am doing improvisation. I can say funny things that make her laugh spontaneously, but she can’t retain a complicated joke. She can’t stay attentive to America’s Funniest Home Videos.
Man, I’m realizing that she is further declined than I had admitted to myself before.
This conversation is definitely helping me.
Thank you.
Seriously, I’m taking all these suggestions to heart, thanks.
You say her greatest problem is boredom?
There’s just so much you can do for her as you are human...your health matters too! Hugs 🤗
Quite a while back I was turned down by banks to notarize a medical POA. Before that I was scared of lawyers and the expense.
Ok, here’s where it gets embarrassing.
I may have made some of my decisions out of fear and guilt. (But also gratitude and affection.)
Mind you, I’ve always been a decent husband; kind, faithful, encouraging and supportive. In her life she pursued a lot of interests, mostly artistic; hair styling, jewelry making, ceramics, drawing and painting, advertising, website design and I’m sure I forgot a few.
And she was supportive of my dream. I was a laborer and wanted to get down off the ladder. She allowed me to buy thousands of dollars worth of camera and video equipment. I focused on weddings and slide shows. I had 3-chip cameras and they would think I was there from the network news. High school athletes would get in trouble at the awards banquets when they would run to get the best seat at my slide shows.
I thought slides could never get replaced by digital photography. And eventually wedding guests would show up with video cameras that went straight to hard drive. I had a pile of very expensive door stops and no way to catch up.
I still had still DSLR cameras so I tried to create digital murals by taking pictures of them in a grid and then stitching them together in Photoshop. I got ripped off by three paint artists in a row. Thousands of dollars and hundreds of man hours later I realized I was a failure.
Guess who never thought of me as a failure...
She would be doing a much better job of care than I am.
Anyway we’re destitute. We use a significant amount of government assistance. All through her decline she begged me not to feel guilty.
We have the stimulus money which I’m determined to use for travel to see the boys and grandkids. I want to make sure our car is functional. We get our second vaccine next week.
So there, I said it.
Oh yeah, and the boredom is exacerbated by the fact that she can’t converse or learn to do new things. She can take dozens of blouses off the hangers in a day but she can’t put them back. She puts dirty dishes away in the wrong places. And I’ve had people offer to teach her how to knit.
Good Luck,
Robert
By the way, this forum is open to any and all posts and/or questions from people like yourself who are looking for support, willing to share their stories, and need an understanding audience.
I hope you will continue to contribute.
Otherwise, you face the risk of increasing isolation. If you get sick or injured, nobody may know to come to your aid. If you must spend some time in a hospital - God forbid - you need others who are knowledgeable in your wife's care. Most likely, you and your wife will experience mental health disturbances if your situation doesn't change. You will experience stress and experience caregiver burn out since you will not have enough time to care for your own needs - no 7-9 hours of good sleep every night, no 3 healthy meals at a reasonable pace, your health issues will not be adequately addressed early, and no fun/social life or time to engage in activities you enjoy.
I know I live in a significant amount of denial.
One thing that gives me assurance and hope in the mental health arena is that I no longer have night terrors or vertigo.
Also, I’ve discovered that she will watch me walk around the high school track so I can get exercise.
We used to live in a big city. Now, in a town of 1,500, unless help falls in my lap I don’t know how to go about finding a support group. And how would I explain my absence to her?
Am I going to learn from y’all?
I guess we’ll have to wait for the responses to stop and see. I’ll try, I promise.
You are a hero. You are brave.
Give yourself breaks so you still have the chance to connect with the outside world.
Granted, I’m limited; but I do get to express myself on a couple websites.
I can write as my wife sleeps, and I do get occasional opportunities to take pictures.
I’ve had acquaintances on photo editing and writers sites that keep my mind active and creative. It’s just that I can’t devote myself to anything that takes a higher level of time and effort.
I write limericks in my mind as I go to sleep. Here’s one:
There once was a doggy named Dale
Who went to the vet looking pale
He said in a tizzy
Hey doc I’m so dizzy
The vet said, “Quit chasing your tail”
I’m alert, and as you know, the world needs more lerts.
As a matter of fact, there is something going on with her legs. The way I can tell she’s asleep is when her legs stop moving. Walking is more difficult.
I’ll give her anti-inflammatories sometimes because doctors can’t really diagnose anything.
We drive a lot. When she’s going somewhere, it gives her brain a rest. She doesn’t have to make any decisions, everything is set. It’s like that in waiting rooms; she can wait forever.
We’ve had a couple of incidents of incontinence, but just enough to give me an idea of what it would be like. I’m so glad her long term memory is lasting as it is. I don’t want her to be too aware and concerned with that.