Younger Spouses of Dementia Patients (VD) 10 to 20 years +-

Hollyrose

Hello - just joined and have no idea how or where to start. One of my toughest challenges since my husband was diagnosed is that I now feel our  age difference in many ways. Prior to diagnosis I never thought about it. Perhaps everyone married to someone significantly older struggles when illness of any type becomes part of daily life. Any suggestions? Thank you.

David J

Hi Holly and welcome to the club no one wants to join.  There is a great community of diverse people with one thing in common: a LO with dementia. Here, you can ask questions, get advice, give advice, or just safely vent to people who understand.

I am sure that it is difficult to have an ill spouse who is older than you.  The upside is, think how difficult it would be if you were his age. My DW and I are the same age and there are days that wish i was younger and stronger.

The first recommendation that newbies here get is to talk to and elder law attorney for estate planning specific to your situation. Review of documents prepared prior to a LO's diagnosis is important.

Charlie is a beautiful Golden Doodle, but they all are!  Our Chou Chou is 12 and has hip displasia but that doesn't stop her from running and jumping like a puppy. 

I'm glad you found us and hope you stay.

Dave

M1

Welcome Holly.  My partner is 15 years older than I am; we have been together coming up on 27 years.  She was 53 and I was 38 then; now she just turned 80, and I am about to turn 65.  We've had a great ride.  She has always had a lot of health issues--inherited scoliosis, rheumatoid arthritis, allergies (I call them the redheaded Irish genes that run in her family),  then diagnosed with an indolent lymphoma in 2011.  But she is also incredibly strong and vigorous and until this year could outwork me most days of the week (she was a college and high school athlete and a custom builder for a living, so worked outside doing vigorous stuff her whole life).  We lived together only part of the time until 2016 (I had two kids from a previous marriage and lots of commitments in a medical practice), but have been together full time since then when I sold my house in town.  Her memory issues became evident about 2014, and have really progressed over the last 2-3 years such that now she is a solid stage 5 (if you want to look up stages of dementia).  Some of the medical things have been relatively easy for me to handle because of my medical background; I do think that helps.  We're personal friends with a lot of her doctors, and it's easy for me to get them to respond to me.  I don't discount that---I don't want special treatment, but if I call, I can usually always get through, and not everyone has that access.

I feel much more alone now, but I'm also pretty happy with what we've had and wouldn't do anything to change it.  Being a big-time introvert helps.  We live on a beautiful 150-acre farm, and while it's falling to me to keep it up (or let go what can be let go), it's a natural sanctuary (and an easy place to quarantine this past year).  This forum, contact with my kids, and work contacts (I work from home part time) keep me sane.   We have 2-3 supportive friends who haven't dropped out yet; one of her former trim carpenters is taking her to a picnic lunch tomorrow with a bunch of her old work gang.  She's been like a teenager today, checking her hair and planning what to wear.

Another thing I would say really helps is that she has always been a charismatic person and still has a great sense of humor.  Like today, when she couldn't remember a phone number and then took five tries to dial it when I gave it to her, we were both laughing.  She was laughing at herself--and it kept me from crying, because it's so, so sad.  She's got an Irish temper and can be very controlling, but is less frustrated and angry now (because she remembers less) than she was a couple of years ago.  Humor really, really helps.  Might as well laugh, right?  We try to live in the moment.  

One other thing:  we have always both assumed that because of the age difference, that I would outlive her, and have planned accordingly.  For example, although I am her executor and beneficiary, she is not mine; my kids are.  But as I approach 65 (got my Medicare this week YAY!!!) and as she becomes more dependent, I am very aware how bereft she would be if something happened to me, so we have made some adjustments there.  My backup plans for her are pretty detailed in case someone had to step in for me in a hurry.  It's kind of like having a kid again (think Benjamin Button), but without much to look forward to.  I used to have a great poem about aging in reverse; wish I still had it.  It ends with leaving this world as a twinkle in your father's eye.  Not a bad way to go.

I don't know that any of that helps you, but yes, I get what you're going through.  I hope your relationship has been a happy one.  Makes all the difference, to me.  I don't know if I could do this if it hadn't been.  There are caregivers here who bear up under far worse than I have.  I wish you well.....

[Deleted User]

The user and all related content has been deleted.

M1

Thanks Victoria, that's a good version! Love Carlin, I didn't remember it was his. I specifically remember the twinkle in your father's eye though....not quite so Carlinesque! Maybe mine was the PG version....

lqadams

My husband is 75 with Lewy Body dementia.  I am 65. He has incontinence,  cannot dress himself,  cannot shower on his own and cannot be left alone at home, yet cannot go shopping with me because he cannot walk more than 40 yards,  even with a walker.  Sometimes I am resentful that my retirement years are spent tending to his needs .

But, other times I am grateful that I am younger and still able to take care if him, the house, the yard, the finances etc etc.  I pray that I stay healthy so he doesn't need to go to MC. Something we cannot afford. 

And, I'm grateful that I need to care for him and not the other way around. Which sounds horrid, but true. 

I just take one day at a time.

Warmdog

Hello Hollyrose and all. This is my first post too. Husband is 77 and I am 65. His issues have been mostly within the last year. He has had two falls down the stairs from second to first floor both requiring hospital stays. He had complained of dizziness and foggy thinking for some time prior but I didn’t suspect the severity (=guilt). On the day of the second fall he had just completed 6weeks of physical therapy and we felt he was on the road to “recovery”. He is not formally diagnosed but the memory tests during his last hospital stay were a shocking to me. He seems better daily again. He will be getting PT again, a heart monitor, and is on a number of blood pressure meds. I am afraid of leaving his side but need to find ways to continue with my daily activities. I am a writer, semi retired, and I ride horses which feels like a distant dream now. I find myself grieving for him and got the life we both had before. He had been sweet and appreciative and we love each other very much. He dresses himself, gets his own coffee and lunch, and walks but is a little unsteady/ weak. He reads a lot and sleeps a lot. I guess that’s all for now, thanks fir being here.

Iris L.

Warmdog wrote:

 He has had two falls down the stairs from second to first floor both requiring hospital stays. He had complained of dizziness and foggy thinking for some time prior 

 He will be getting PT again, a heart monitor, and is on a number of blood pressure meds.  

 He dresses himself, gets his own coffee and lunch, and walks but is a little unsteady/ weak. 

---

Welcome warmdog.  The primary cause of dizziness in older adults is medication side effects, although of course there could be many other causes.  Be sure the cardiologist is thorough in evaluating his persistent unsteadiness and weakness.  Until further information, he should not be on stairs unattended, or even not at all.  Solo walks sound to be not a good idea also.  Does he wear a Medic Alert bracelet?  

Iris L.

TiredSoTired

I am 50, my husband 67. He was, and still is so youthful and full of life! Only people w\ho don’t know him think he’s not 10 years younger to this very day. He knows we’re married but doesn’t recall the details of our wedding or any other milestones actually. He just lives with me and relates to me on a day to day basis. He gets angry and frustrated frequently but forgets we even had a disagreement an hour later. It’s tough.

Linda 1951

Thank You for sharing such a beautiful poem.  I am caregiver to my 72 year old husband who is in moderate dementia stage and refuses medical care.  Very stressful.  I took care of my Mother for a year before I put her into assisted living at 75.  She passed at 82 with AZ.  I see the progression in my husband (been married 34 years) and I am scared.  He was a 50 year big rig truck driver and we rode Harleys and traveled for about 20 years on our bikes and Toyhauler. Life is now changing and very heartbreaking.  But I truly loved the poem. God Bless

Linda 1951

Thanks Victoria for the poem.  My DH has moderate dementia he is 72.  I am 69 and was caregiver to my Mother with Lewy Body Dementia even though my Sister and I put her into assissted living at 75 until she passed at 82.  I had to daily go check on her at the assisted living facility which was very nice here in Reno at that time called The Seasons in NW Reno. So, I know the stress and heartache of watching a loved one with dementia and AZ.  I am having to take care of my spouse during his journey and much harder since he and I actually live together.  Each day I observe further decline and denial in my spouse regarding his condition. He was a big rig truck driver for 50 years and we rode Harleys and traveled for 25 years.  We bought a ToyHauler 12 years ago but I am concerned regarding his driving skills as I am seeing decline in judgment when he drives and he will not let me drive.  So, I am having much difficulty dealing with his failing cognitive health.  I am starting up my counseling once again for my own mental health dealing with this.  I just try to take life one day at a time but life has changed for me and especially for him.  God Bless

Iris L.

Linda 1951 wrote:

  Each day I observe further decline and denial in my spouse regarding his condition. 

70 percent of PWDs have anosognosia.  This is not the same as denial.  It is very unlikely that he will become aware of his further declines.  You will have to learn work-arounds to accomplish your safety goals.  

Iris L.

ButterflyWings

HollyRose, Warmdog, Tired, and Linda,

Welcome but very sorry you need to be here. We are a good and strong community, all either going through, have already, or will soon experience some of the same challenges of our loved ones' dementia. 

My DH has Alz, not VD and he is 19 years older. We always expected I would outlive him, possibly help support elder health needs given our age gap. But never in my wildest dreams did I expect this. Just was not on the radar at all, sadly, since his dad seems to have gone down much the same path but without a formal diagnosis.

So...I feel your pain. And right now, (Stage 6) I can tell you only a few things:

1. This forum is priceless. It is the best advice our Neuropsych gave us, upon diagnosis.

2. I know way more than I did 2.5 years ago when diagnosed, but still am learning daily just how little I understand about this terrible, horrible, disease. Trying to go with the flow is best.

3.The goal? Survive our LO's dementia. To not let the disease take both of us. Seriously.

4. Teepa Snow videos are short and brilliant. Her validation technique makes life easier.

5. You can't please everyone and those who are useless, are useless. I've found many to be.

6. Do the best you can. And try, try not to beat yourself up. Living with AD does that enough!

7. Handling finances and driving should stop WAY before many caregivers think. DANGER!

8. Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

9. Memory team said "get your affairs in order immediately". I didn't know where to start. Search "Elder law attorney" on this forum for outstanding (life saving, future saving) advice

10. Read this excellent article and share with interested family and friends:  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Good luck to you. There are many survivors (in "Stage 8" after the disease runs its course) on this forum which gives me hope I will make it through as well. Some have since signed off and moved on to post-caregiving lives. So, it is possible to support our spouse or other LO through this, and live to recover and have a positive future even though the original plan has been canceled by dementia. That is my goal. Some days are harder than others. Lots of help here, to commiserate on our worst days, and cheer us on our best. I wish the best for you.

trottingalong

My first post in a couple of years. I am a few months shy of 65. My husband is 77. I ride horses, he has COPD and feels he’s slipping into the next stage. Everything is foggy. He has a hard time comprehending a lot of stuff. I love this man to death and will do anything for him but his dependence on me is increasing. There are days where I am overwhelmed with his extreme focusing on certain people and his paranoia. I am careful what I say to him because the simplest thing can turn into an argument and no matter how hard I try, I can’t seem to say or give him the right answer. My outlet is riding and I’m so afraid that will be taken away from me. Glad I found this group.

Tucsonbirder

This is my situation exactly.  DH is 84 and I am 70.  He was diagnosed 6 years ago.  I just placed in a care home on April 1, because I was feeling so resentful and trapped by his increasing care needs.  I am still "young" and healthy, with many interests outside the home, and just felt I was going to lose my remaining "good years" if I kept him at home any longer.  It hasn't been a completely smooth transition, but he is doing reasonably well, and I feel much more hopeful for my future.  My visits with him are now enjoyable instead of angry and resentful.  I had to do this for my mental (and physical) health, although I know many others try to keep their LO home as long as possible.  For me, this just was not going to be an option.  Good luck with your journey down this awful path.

Gig Harbor

TucsonBirder I know exactly how you feel. My husband is not quite where your husband is but I am already feeling like my life is going to disappear. He is 81 and has been retired for 20 years. I am 69 and worked until 67 because I knew he might need placement someday and I wanted to be more financially prepared. Needless to say I am resentful since I now do everything. He seems bored much of the time and TV no longer holds his interest during the day. He does walk alone but that only takes an hour. He makes his own breakfast and lunch. It takes him time but it also gives him something to do. He is becoming more frustrated with those tasks so I will soon take them over. When I am doing yard work the only thing he will do is mow our very small yard and says that nothing else really needs to be done. I simply do not have it in me to be a social director on top of everything else. He doesn’t really enjoy car rides of more than an hour and gets impatient in restaurants and hates wearing masks when out. Travel is out of the question because he would be totally lost if something happened to me and he would be in a very unsafe position. I also like being home because I can have my own space that I can’t have in a hotel room. I think placement will be in his future for my own sanity. I can still get out for a few hours but I think that by the end of summer it will be a thing of the past. It is hard to be hopeful about the future but I plan to get thru this and have some time to still enjoy my retirement if only for a few years. I don’t feel guilty having those thoughts because he has had many years of retirement doing exactly what he wanted to do.

Tucsonbirder

Gig Harbor:  thank you for your response to mine.  It really helps to hear from other people in a similar situation, with the age gap and the fear of losing our remaining good years.  I am slowly learning that guilt is a wasted emotion.  It does no good for you, or for your LO.  It just eats away at your mental and physical health.  I have gotten a lot of support for my decision, from DH doctors and others, that he is not the only in this equation.  Me and my needs matter just as much.  You must do what is right for you, and if that is feeling that you can do no more, then begin to explore placement option.  I, too, could not take on the social organizer role, and there was very little he wanted to do anyway.  Now, in placement, he actually does engage in the activities they provide there, and he says he enjoys most of them.  He is definitely getting more social interaction than he did at home, where he just sat in a chair all day and tried to read.  Someone gave me this wise advise:  Alzheimer's will take one life--don't let it take two.   You have my total support!

karwiy

I understand completely. My husband is 85, I'm 63. For years, the age difference was not a factor.  No longer do we have that luxury. Found this in the NYT the other day; was helpful.

https://www.nytimes.com/2021/04/22/well/mind/radical-acceptance-suffering.html

This forum is a terrific resource - we're all in the same boat one way or another.

Linda 1951

Thanks.  How do you handle this memory behavior because when I confront him he gets more angry, says I have a memory problem, says he isn't doing anything wrong nothing pleases me, he doesn't say mean abusive words.  So do I just not confront him and do nothing?  I am starting couseling once again as this angry behavior and body language directed at me is daily.

ElaineMcG

Thanks for raising the issue of age difference.  DH is 87, I m 66, he was diagnosed with dementia, probably Alzheimers 2 years ago.  The progression has been slow so far but I fear what is down the road.  His younger sister just went into assisted living because her Alzheimer's disease is progressing more rapidly.  We are fortunate to have LTcare insurance and other financial resources but I still worry how much his care will cost.  More than the $ I am worried about the emotional toll on me.  I usually cope pretty well and accept his forgetfulness but every once in a while it shocks me.  Last night he said something about going north to look at the foliage.  I had to remind him it was spring not fall.  Those things just set me back.

I try to do at least one good thing for myself everyday, a walk, gardening, talking or seeing friends.  It's a spiritual as well as practical practice to find some joy in each day as it is.

ElaineMcG

Dear Trottingalong,

I ride too and volunteer at an equestrian program both of which help me keep my sanity.  I too dread that I might have to give that up once DH can no longer be left alone

Tucsonbirder

Elaine McG (and others).  The 14 yr age difference really has had a huge impact since DH was diagnosed 6 yrs ago with Alzheimer's.  It never mattered earlier in the marriage, as he was always very fit and active.  Indeed, he rode across America on his bike at age 74, just 10 yrs ago, without any difficulty at all.  Now at 84 and in moderate stage, it's like he's aged 20 years or more.  We were a very active couple.  We planned a very active retirement, with adventure travel, etc.  Just as that was all about to begin, he began to decline.  Anything we did outdoors had to stop, and just going for a short walk is a big deal now.  As his dementia increased, all I could feel was trapped and resentful.  I am not proud that I feel that way, but it is my honest response.  I felt that at age 70, I had to live my best life now because I don't have that many good years left either.  Who ever knows?  I tried to have full time aides in the home and do my activities outside the home, but it just kept wearing me out, planning for the aides, still trying to keep him occupied, etc.  I just reached the end of my rope.  Since he went into placement on April 1, I feel like I can live my life again, even though there are still many responsibilities and obligations to him that I willingly do.  It's just that I can travel, be out of the home and involved in other things, and enjoying life.  I struggle with a lot of guilt about all this, but as others have said, you can't ignore your own needs, or you do so at your peril.  It would have destroyed me, as well as him, to keep him home.   I am slowly finding peace with my decision.  We each have to find out own way through this nightmare.  Hugs to you.

Iris L.

Linda 1951 wrote:

 when I confront him he gets more angry, says I have a memory problem, says he isn't doing anything wrong nothing pleases me, he doesn't say mean abusive words.  So do I just not confront him and do nothing?  I am starting couseling once again as this angry behavior and body language directed at me is daily.

---

This is anosognosia.  If you try to confront PWDs with anosognosia, they do become upset.  You will have to learn validation and work-arounds from the members.  If you are doing marriage counseling, regular marriage counseling won't help.  

Iris L.

John_inFlorida

My DW is 9 years older and we have been married 40 years. Age didnt seem to matter that much. But now everything is hard for her and retirement certainly isnt what I expected.  Sometimes I wonder what happens as I get older, if anything happens to me I will be on my own. It's like putting everything on hold. right now I am healthy and am able to take care of everything.

Crushed

Many of you are describing the same feelings that  young  onset spouses have always had. 

I'm 70 and my entire 60s were consumed  as as an Alzheimer's spouse.

 
  

Melodious bird

My husband is 69 and I will be 46 soon. We have 2 children in their early 20’s. Like you I never noticed our age difference until her became gravely ill 8 years ago and then was diagnosed with AD almost 5 years ago. I wish I had something supportive to say, but we have really been struggling. I was really good about making sure he wasn’t driving, but I did put off talking to a lawyer and wish I had done so sooner. I have an appointment next week. That is probably what I would suggest, get your affairs in order sooner rather than later. Wish the best for you both.

Laurention

In late 2008 I jumped at the package that my company offered ...With my DW being 3 years younger, we figured she would work another 5 years.

 2 years into my retirement, and enjoying  the "house husband" role ..EOAD reared its ugly head. I'm 67 now and been widowed for 5 months.

DW never saw retirement, or her 65th birthday.

Every so often I would have a coffee with my former supervisor ..He was 72 when he lost his 61 year old wife to EOAD.

Mike 

Thadd

I’m there too-

My first post. My wife is 70, I’m 62 and prior to Feb 1, was still working and planning for retirement. Right now I’m trying to figure out the financial pieces with no income. I’m also trying to manage my wife’s care and set things in motion for long term care. I’d appreciate any guidance people can provide along those topics, and also would like to know about respite care so that I could return to work on a part time basis. (Is that even a possibility?)

Mary Lucia

Thank You for suggesting Teepa Snow! I have watched two videos so far. She is spot on! All the inner and outer emotions I live with have come to light listening to her. My perspective on my “new normal” needs to change for my own sake. It has been almost 10 years since DH began showing changes. He is 72, I am 68. We are married 46 years but our marriage ended 4 years ago during a two-year period of anger and aggression following my suggested that he be evaluated. He never agreed to it. We still live together in a somewhat civilized manner in spite of the daily challenges of his disease. I speak with a counselor every two weeks to help me through this unimaginable journey. I will now add Teepa Snow for support.

manuzito

My story is different.  I was hit with 2 PWD at the same time, my DH and my mother who has been living with us for almost 30 years.  My DH was 14 years my senior. He passed away 5 months ago.  He was declared legally blind 10 years ago and with dementia 4 years ago at the age of 90.  We were married for 52 happy years.  My DH, my mother and I were inseparable.  We had a very good life, I retired at age 55 so that we can travel and enjoy life while we were healthy.  I took over of all our affairs when my DH started to lose his sight.

DH was a very easy person to take care of. Towards the end he slept most of the time and started to lose his balance when going to the toilet. He was never incontinent.  I sensed that he felt secure when I was close to him because he always wanted to hold my hand.  I had hospice at home after he had a mini stroke.  He died peacefully 3 days after the stroke because he couldn’t swallow food or drink liquids.  

My mother will be 101 years old in 4 months.  I think she was misdiagnosed with dementia just because of her age.  She wasn’t given any tests and is not taking any medications, only her daily vitamins.  Her short memory is bad but her long term memory is better than mine.  She still walks up the stairs to her room, makes her own bed, dresses and feeds herself.  She is never left alone because I’m afraid she might fall.

In conclusion, I’m one of the few that is riding this awful illness without losing my mind.  I miss my DH immensely and would give anything to have him back for a minute in any way or shape.

I wish the best under the circumstances to all the loving caregivers. 

Buggsroo

My husband is 12.5 years older than me. I feel this disease keenly, gone is his trenchant humour, his vitality and his amusing observations. I miss my husband a lot, in his place, a shuffling, fearful and irritable person, someone who asks me the same question over and over. Sadly, he is fearful, quick to anger and just terribly insecure. 

The other day he got lost on his way to the dentist, so I had to call the police. They were amazing and so were the neighbours. Now the neighbourhood knows he has dementia. 

I have to cook his meals, pay the bills, make sure he takes his meds, in other words, I do it all. In some ways it has made me stronger, however instead of a husband, I have a five year old boy. Nothing prepares you for this. 

I do cry; a lot. I am dreading what will be coming.