Grief by a 1000 cuts

Norm 22

DW diagnosed two years ago, now about stage 6.6.  Family helpful but no one lives in Chicago area where we are.  Married 43 years, met in high school.  She will start day program 3 days per week next week, will be a big help.  Dementia is the road to hell with no information as to how long it will take, and what ultimate emotional toll will be.  Best to all. Norm

jmlarue

I hear you. DH and I were high school sweethearts, too. Married 54 years and almost nothing remains of the man I married. In too many ways, nothing much remains of the woman he married, either. It's a terrible, hopeless feeling to know we're fighting a battle that we can't win. Seems to me that a lot of us are just trying to outlive the battle fatigue. Take a deep breath and carry on.

Joydean

Norm R, hi and welcome. You have come to the right place for help and great advice from a lot of people. 

You are so right, it is a road to hell. Sorry to say that, but it’s not easy and no one wants to have to go through this. I hope the day program helps. It will give you a little time to do things for your self. I haven’t had that luxury yet. For the past 6 years I have been sole caregiver for DH. We have been married 53 years, he was my best friend, we shared everything together. Now I take care of him. Nothing about this disease is easy. 

Others with more knowledge will join in at different times. They will welcome you also and share their information with you. I just do a lot of praying. I hope you have all the legal documents taken care of. POA, will’s, medical POA. Hang in there, you are stronger than you think. 

Crushed

Hi Norm and welcome

I met DW as an incoming university freshman in 1970.  Brainiest student in a brainy group.  Summa *$%& Laud in Math in three years.  Married her while she was a medical student.  
Over the past 12 years I have watched  the complete mental destruction  of this brilliant wonderful woman . She will be 70 in May but won't know it.  

Take it one day at a time  

Ed1937

Norm, welcome to the forum. Sorry you have a reason to be here.

We're not as far along as you, but we've been married 64 years. She was 18, and I was 20 at the time. We were a team, and did everything together. Now I make all decisions without her input. This disease sucks to the limit. We've been on this road for 4 years.

toolbeltexpert

Welcome Norm. My dw has been on the road to hell for 10 years or more? No diagnosis. She can still do alot, but the Long term memories are starting to fade. Our families  are 1000 miles away and not too much concern it seems. Like you there is no time or rhyme  to any pwd so many differences. Hoping you'll get some rest with the extra care.

loveskitties

You are so right, Norm.

My parents have been married 77 years, and it is doubtful they will make 78 in June.

Dad diagnosed 2 1/2 years ago with dementia.  Up until then in very good health for his age.  In the last 6 months there has been a dramatic change and he is now in MC, but we feel Hospice is days away.

My mother who is 97 has had the hardest time...her long life partner is only a shell.

This disease kills not only the patient, but also those who love them, just in a different way.

DrinaJGB

12 years and counting with no relief in sight.......

jfkoc

Hi Norm....

There are so many questions...few definate answers. The "good" thing is that you now have all of us traveling the journey by your side. We understand, we care and we have probably the best information available to share.

Judith

Marie58

Norm, welcome to the forum. You'll get a lot of support here. DH and I have been married 40 years. He was diagnosed almost 6 years ago. He attended a day program before covid shut it down but it was a big help. Now he lives at that facility and is in the end stages. However, he's physically healthy and only 66 so who knows how long this will go on....

Blessings to you and your DW.

Brendag47

Hi, I’m Brenda. I’m new to the forum. I’m not sure the right shorthand to use as I see many posts with acronyms. I’m brand new to chat rooms as well.

My husband was diagnosed with Alzheimer’s Disease in 2016. I am his primary caregiver and my goal is to keep him at home as long as possible. 

I tried to go to an in person support group for caregivers but I found all they did was gripe about their loved ones and how hard their life was living with someone who had dementia. Certainly not what I was there to do. I left after a few months since it was all making me so depressed. 

I turned to this site early this morning and I really liked the positivity and support. Thank you all.

By the way, I’m Canadian. Please don’t hold that against me

White Crane

Welcome to the forum, Norm.  You will find a lot of good help here.  We are here to listen anytime you need to talk.

Stuck in the middle

Welcome, Brenda.

There's a list of "commonly used abbreviations" that decodes most of the acronyms we use.

You might try a different support group.  The one I attended before covid had formal presentations, discussions of "how-to", and cookies.

This is a helpful place.  We do some complaining, but a lot of us get help.

Crushed

Brendag47 wrote:

Hi, I’m Brenda. .....

My husband was diagnosed with Alzheimer’s Disease in 2016. I am his primary caregiver and my goal is to keep him at home as long as possible. 

Dear Brenda I am going to give you some unsolicited advice based on 12 years with this disease. 

1) Your primary goal has to be to survive and keep yourself going.    I have been to to many funerals of caretakers.  This is killer job.
2)  Your goal for your husband  is the best possible care consistent with #1 Do not fool yourself that the best possible care is necessarily at home.  
3) what is your plan for your own care  as you age?  What happens if you get disabled tomorrow?  You must have a plan if your caretaking is no longer possible

 Its been a long hard road.  My brilliant wonderful wife was diagnosed MCI in 2010 and EOAD in 2012  I kept her at home until 2017. By 2018 she had no idea who I was and in May 2022  she will be 70. 

  for fun
  
 

Norm 22

It's a long and winding road...

Pat6177

The title of this thread has stuck in my head. DH has had a few small milestones this week. I watch the evidence of the slow deterioration and say to myself “Another paper cut”, “And another.” Oops “And another”.

LilySue

1,000 cuts. I absolutely identify with this description. It's been 10 years since DH had a horrendous stroke that left him able to walk, but not talk. He has endured global aphasia ever since (I guess Bruce Willis is making that disorder famous now), and at present the destruction has turned into severe dementia. A thousand times I've grieved for this man who is a shell of what he was. It's been awhile since he's known who I am, his wife of 54 years. To know we're not alone makes our place on this earth a little less lonely. Bless you.

Brendag47

Thank you. The cartoon was cute.

I am quite realistic that Jim may have to go into long-term at some point. My goal is to keep him here, with the appropriate supports, for as long as it is feasible. Indeed, I have a list of criteria that might drive that decision, especially those that are in his best interests in terms of safety, security, access to medical professionals on site, memory care, etc. 

The state of long term care in our province (Ontario) is abjectly lacking. In fact, 35% of all the deaths in Canada in the last few years were in such facilities. He and I both volunteered in long term care facilities for over a decade. We saw first hand that, despite the desire of professional staff, funding is inadequate and resources are perilously scarce. In addition, we have limited capacity to support aging-in-place. Notwithstanding, I am taking steps now to at least get him on a list for long term care - waiting lists are six years long!

Fortunately, we are in a good financial position to afford private care. We currently have a private care personal support worker who largely comes in to support me with my myriad of duties in housework, laundry, meal prep, etc. Her help is immeasurable. As a caregiver, you have to take on 100% of all the responsibilities previously shared by two. We also are blessed with family and friends who are constantly willing to step in to help. Our two grown children would take “a bullet” for their dad. As for me, they often remind me of the old adage “you have to put your own oxygen mask on first before you help someone else”. 

Weaving through this message you might see that I do have a long term plan which is planned and yet dynamic to meet changing circumstances. 

I so appreciate your thoughts and my reply, I hope, reflects my gratitude..

Brendag47

Thank you. If you could pinpoint me to where I can find the acronyms? 

Believe me, I sometimes complain about our lot in life. This was not what our retirement years were meant to be! I often visit pity city, but I don’t want to live there. 

It’s no wonder that they call this “the longest goodbye”. 

Brendag47

One of the worst things about loving someone who has dementia is the ongoing grief at what the person has lost. And, consequently, what you have lost. As someone said, you mourn because you had the privilege of being loved”. No doubt, your husband knows he is loved every time you take his hand or diligently try to unpack his ‘word salad’.

I’m glad that Bruce Willis is shining a light on aphasia. There are so many celebrities who are being afflicted with dementia (think Robin Williams, Tony Bennett, Rita Hayworth, Perry Como, Glen Campbell). And award winning films, such as Still Alice and The Notebook, can add to the conversation. They are all in the same boat as our loved ones but can help a wider audience to appeal to. We have a famous politician here in Canada whose husband has dementia and became uncharacteristically violent, such that he is in long term care now. She is marshalling political support to increase funding and support for dementia. I admire her (there was a recent documentary but I’m not sure that you can access it in the U.S.)

And, I admire you.

rannswann

Yes, the title of this thread is so very true. And like all those tiny paper cuts, the pain IS tolerable, but so very annoying, distracting and frustrating. In my case, it results in a numbness and sometimes indifference to the world outside my family's struggle with this horrible disease. The burden of making ALL the decisions, doing ALL the household tasks, and, in fact, thinking for two is overwhelming. 

I would suggest, Norm, to fight against this cathartic state and do what you can to maintain whatever it is - outside of the love and devotion for your DW - that gives you joy. It will be hard and sometimes counter-intuitive, but it does nourish you and give you the strength to carry on. It can be as small a thing as rising earlier than usual to walk in your neighborhood, or enjoying a good scone with a friend.

Personally, my "little joyful journeys" take place when my DW is napping. It's much like when my sons were babies and they finally went down for a snooze. I could then recharge by doing something just for me.

They're little things, but sometimes they counteract the bothersome lacerations of living with the paper cuts.

Pax vobiscum.

Paris20

Recently I told a friend that AD is death by a thousand cuts, slow torture for both spouses. I’ve seen many posts explaining that we had to come to an acceptance of this incurable condition in order to get through it. As of now, there is no medicine, no talk therapy, no games or puzzles, no rational discussion that can cure this disease. Without acceptance, we add more frustration and more stress to an already horrible situation. Hope is great but it needs to be evidence-based.

Well-meaning people may offer advice that often turns out to be ridiculous. I don’t listen to it. I DO listen to the advice I get here. Support and information are the hallmarks of this forum. The non-judgmental replies are a gift. I turn to this site almost every day. I learn a lot and I reinforce  the notion that I’m doing the best I can.

Stuck in the middle

Brendag47 wrote:

Thank you. If you could pinpoint me to where I can find the acronyms? 

Believe me, I sometimes complain about our lot in life. This was not what our retirement years were meant to be! I often visit pity city, but I don’t want to live there. 

It’s no wonder that they call this “the longest goodbye”. 

Just scroll to the top of the page and look to the right for "Commonly Used Abbreviations."  Click on See More and you will see a couple of pages of them.

If you don't want to live in Pity City, you need the Serenity Prayer.  Pray for the courage to change the things you can, the patience to accept the things you cannot change, and the wisdom to know the difference.  It helps me, maybe it will help you.

Cookstownlad

My DW of 53 years passed on 2/28/22 in the MC facility she had been in for ten months. I’m posting in the hope that my experience during her stay will allow someone in a similar situation to make the guy-wrenching decision to place their loved one in a MC facility. I was the sole caregiver at home for DW for nearly four years and during the last year most days would end in shouting, profanity and exhaustion. Of course, I accept full responsibility for allowing these encounters to spiral out of control and will always regret my weakness. Many nights after putting her to bed I could see no way out of the seemingly endless turmoil and seriously considered ways to end it for both of us. Totally unexpected DW suffered a seizure and following a two week hospitalization was transferred to a MC where she remained until her death ten months later. What happened during those ten months was so dramatically different from our last year at home together was that never during my daily visits did she ever utter a rebuke of any kind. I was the husband she loved for 53 years and she was the love of my life that I could love and comfort during the final year of her life, Her death was quiet and pain free and I was with her until she left me, I hope to wait until we’re together again. If anyone reading this is resisting the placement of a loved one, I sincerely hope that my positive experience will provide at least one reason to give it a second thought. I’ve gotten great comfort from so many of you over the years, I truly hope this post will at least help one.

Crushed

Brendag47 wrote:

The state of long term care in our province (Ontario) is abjectly lacking. ......Notwithstanding, I am taking steps now to at least get him on a list for long term care - waiting lists are six years long!

Fortunately, we are in a good financial position to afford private care.

Just to follow up

Are you saying you can afford long term care starting now  ?
I'm not familiar with the Canadian system 

I am now almost 5 years with DW in private paid long term care  
 

Crushed

Paris20 wrote:

 As of now, there is no medicine, no talk therapy, no games or puzzles, no rational discussion that can cure this disease.

Well it's actually kind of worse than that.  Its not even a question of cure- Alzheimer's attacks our idea of life and person hood and identity. 
The patient is a person but not the person they were
The patient can even spend years  in a mental black hole where Cognitive reality  does not go in or out.  The stress on caretakers  is incredible

This is not a "sickness"  it is a form of   "living death".  My marriage died over 3 years ago when DW no longer had the slightest idea of who I was.  She is gone and not coming back.  

  

toolbeltexpert

Cookstownlad wrote:

My DW of 53 years passed on 2/28/22 in the MC facility she had been in for ten months. I’m posting in the hope that my experience during her stay will allow someone in a similar situation to make the guy-wrenching decision to place their loved one in a MC facility. 

Cookstownlad thank you so much for sharing that!

Brendag47

Thank you, I will look. 

I do know the serenity prayer as my husband was in AA for 40 years and counting. It is very affirming.

Brendag47

Maybe a different system here. All long term care facilities have private rooms and semi private rooms and some have ward-like rooms. The government subsidizes the “ward” rate rate but the family has to pay if they want semi-private or private. Nevertheless, in any room situation, the wait list can be anywhere from three to six years! Demand seriously outstrips supply. If you don’t take the first available spot, you go back to the very bottom. 

I meant in my post that we can afford in home private care, which I use to give me respite. 

Hope that clarifies.

Brendag47

It sounds like you made the right decision at the right time for her. My condolences to you on her passing over. You WILL see her on the other side of the rainbow bridge.