Anticipatory Grief?
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My suggestion is to keep reading. You don't really know what the future will bring. As you start to get more familiar with people's stories it's less frightening and seems more "normal."
Still, there is significant loss, and grieving those losses is normal. Do what you can for as long as you can do it--kick that bucket list as well as you can now.
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Brutal, Staying on this forum and letting others know what you are going through sure helps. You can't leave it bottled up inside.
Right now my wife is in chair and smells really bad, she won't get up. I've pleaded, begged and pretty pleased her to no avail.( Only thing I haven't tried is the winch on my 4-wheeler) Getting to be a every day thing. They say Grown Men don't cry, I beg to differ with that. Some time it evens helps.
Every once in a while someone goes thru what we are going thru maybe a problem. They try something and it works. It doesn't hurt to try it on our LO. Since you are new on here, others will watching for you to post to see how you are doing. Hang in there, we can make it together. Hoot.
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For me there was a huge grief period when she got her diagnosis. Then I got used to the new her and the grief leveled off for a while. Then there was an event that brings reality back into focus another personality change or impairment. Then you get used to that and level off again. Then another event, grief, get used to it level off. That's how it's been for me. They change, you adapt, have an emotional break down or two then move on and seek internal happiness in spite of what is happening around you. I have learned to be in the moment as much as possible. Some times you think hey I can handle whatever comes my way and other times you emotionally fall apart under the weight of what is happening and you really can't do anything to stop it. Stay happy in the moment as much as possible and ride out the emotional storms when they come. Just keep breathing tomorrow is a new day.0
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BRB your where I was 12 years ago. That sounds really bad, but there is still lots of good. This year I finally got dw to a doctor for a dx. Now she's in a ncf 2 weeks tomorrow. She spent 6 weeks in a geripsych to get her meds started. She has never taken anything, so this is a big change.
Try to focus on what she can do,you'll be happier. Celebrate life, sure it's hard but staying positive will help your dw. Pwd pickup on our visual clues. If your stressed she will be, if your happy she might be. Post anytime you need to. We are all in this together. And I am sorry for the reason you found our little forum.
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I quit working at 59 to become my husband’s caregiver. You will grieve all of the losses you and she are suffering.
As people posting earlier said, continue to read so you you can understand what may be coming. You will continue to grieve, for your losses and at milestones like when she does not recognize you anymore. Learn to accept it and let it flood through you, if you must. Meditate. You will also have moments of pure love, and if you are lucky you can find a deep purpose in caring for someone.
On a practical note, I would recommend working respite care in as early as you can. You are losing her, but you must not lose yourself. People who were in your life may not understand what you are going through and may drift off. That’s OK, they don’t know what to do. Find a new tribe is you must, but build a life outside of caregiving.
We are a part of your new tribe and we are here for you.
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I think every loss brings grief. I also believe that grief has a life of it's own. It will not be "controlled".
If you can find something that you enjoy that you can focus on at least a little that would be good. And please keep in mind that journeys differ... you may never face some of the situations that are shared here.
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Brb,
Thanks for your post, and sorry you need to be here.
You express well what you’re going through, and you’re entirely right—it’s heart-breaking to witness our spouse’s/partner’s losses, and to read our fellow travelers’ losses here on this site.
Well into the sixth year post-dx, and my DW is late stage 6. I have never been in denial, have never been angry about the dx, but every single day I grieve for my wife’s losses.
One thing that helps me get through each day is to balance that keen awareness of losses with gratitude for those things that still are good. My DW doesn’t know my name, or our relationship—but, daily, she tells me she loves me. My DW needs help with all activities of daily living—but she accepts, even wants, help. (Makes caregiving a lot easier…). My DW is losing weight at an alarming rate—but she lights up and eats up when I give her ice cream.
There is, if we’re honest, a lot of tedium (and worse) in caregiving. But there’s also something pure and beautiful about providing loving care to my DW in her hour of greatest need.
None of this is meant to deny the incredible pain of such loss. As the song line goes, in a new context, “Good morning, heartache. Sit down.”
You can’t help but walk with grief. But you don’t need to walk alone. We accompany one another here, on this sad journey.
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My wife was 58 when she was diagnosed with MCI. (2010) Frankly they would have called it Alzheimer's except that she was a top Government physician (in a purely administrative role)
EOAD came two years later at 60. (2012) She is now 70 and stage 7
I can only say what worked with my wife. I was her 24/7/365 caretaker for 7 years.I had always been the cook and homemaker so that did not change
We did a lot of traveling and as she declined i had to take more and more care of her.
I renovated the house to make it better for her.Interestingly sex helped. she felt connected and loved . I found it hard to ignore the future but she was the love of my life. Her personality never really changed
She got confused , sometimes hilariously but never mean
2017 she because psychotic and began wandering extensivelythat led to placement in memory care . (2017) By august 2018 she had absolutely no idea who I was or the children and grandchildren. She lost all speech by the end of that year
The grieving is real, therapy helps a bit. I just have to remember the wonderful times.
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Jeff86 wrote:Brb,
Thanks for your post, and sorry you need to be here.
You express well what you’re going through, and you’re entirely right—it’s heart-breaking to witness our spouse’s/partner’s losses, and to read our fellow travelers’ losses here on this site.
Well into the sixth year post-dx, and my DW is late stage 6. I have never been in denial, have never been angry about the dx, but every single day I grieve for my wife’s losses.
One thing that helps me get through each day is to balance that keen awareness of losses with gratitude for those things that still are good. My DW doesn’t know my name, or our relationship—but, daily, she tells me she loves me. My DW needs help with all activities of daily living—but she accepts, even wants, help. (Makes caregiving a lot easier…). My DW is losing weight at an alarming rate—but she lights up and eats up when I give her ice cream.
There is, if we’re honest, a lot of tedium (and worse) in caregiving. But there’s also something pure and beautiful about providing loving care to my DW in her hour of greatest need.
None of this is meant to deny the incredible pain of such loss. As the song line goes, in a new context, “Good morning, heartache. Sit down.”
You can’t help but walk with grief. But you don’t need to walk alone. We accompany one another here, on this sad journey.
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Thanks Sandwich. Bucket list has definitely been modified but now is the time.0
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Thanks all. I'm humbled by the responses in less than a day. Trying to figure out how this site works. Is it possible to reply to each reponse, or does it just add to the chain?
I'll stay tuned to learn how you wonder people have dealt with this horrible disease. There are heros amongst us!
Brutal
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My DW was diagnosed 10 years ago at age 65. She is now in advanced stages and lives in a MCF. My suggestion for you is to check out your local Alzheimer’s Society for availability of counselors, workshops to learn about the disease and effects on caregivers and most important support groups with whom you can meet.
The grief and stress of caregiving can be overwhelming at times, you cannot deal with it alone. I am fortunate to have a very active Society nearby that has been my main support and still is. The workshops taught me so much about the disease, how to interact with my wife, how to recognize and deal with my own grief and stress. The counselors guided my decision making and gave me such good advice. We are dealing with the challenges of this disease for the first time, the counselors have helped dozens of families over many years and understand how we feel and what needs doing. Finally, the support groups I attend are so very therapeutic for me. Everyone there “gets it”. We share tears, laughs, practical advice and have built a sense of support for each other that I cannot find in the same way with friends or even family. Having lived through a decade of managing disease progression and the transition of my DW to a MCF, I am glad to share my experience with new members who are dealing with a new diagnosis and just starting down the road.
Reaching out in this forum is also wise. You will find support and advice that will help you keep a perspective on the constant challenges of your situation.
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Okay everybody - here' my effort to respond to the kind advice - hoping somebody can tell me a better way!
Sandwich - see above
ToolBelt - she is extremely adept at reading visuals! She watches me and knows when I'm down; it's touching to see her concerned about ME. Good call on that.
Hoot - my heart goes out to you; you're experience and support (already!) means a lot to me.
Lynne D - very descriptive - especially like the "flood thru", "deep purpose", and new "tribe". I feel it. Good stuff.
Jeff - spot on with gratitude; no matter what, there's always something. And "pure and beautiful" caregiving describes it perfectly.
Crushed - 7 years and little personality change. I'm grateful that so far she's the same Sarah - wakes up happy and at peace. She's handlling this better than I am.
Thank you all for your kindness.
Brutal
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JFKOC - I've spent my life thinking I was in control and could fix things - nothing about this is controlled. How right you are.
Ernie - 10 years. Oh my. I live in a remote location and could use the advise of workshops and support groups. This forum is my first foray and has been an eye opener. Recommendations for on-line help would be appreciated.
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Bill - yes! a grief roller coaster. Fast descents and slow climbs. Thanks for your post.0
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There is a vast amount of online information, often posted by Alzheimer’s Society’s, you can find with Google. Teepa Snow is well known for many videos for caregivers. The link below provides a very good overview of the dementia experience.
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This is one of those special posts I would like to keep so I can access it on those tough days. I appreciate the comments and suggestions. This has become my tribe and I check it out every morning. I am one who can learn best from those who are doing it. I have been an AA member for almost fifty years and that has kept me sober. So I am thinking that this site is keeping me emotionally sane. After My DW was diagnosed with MCI five years ago it didn't take me too long to find this site, I am grateful that I found it. I can rarely leave the house and this group is as close as my computer.
Dave
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Brutal, Your 2st post today couldn't have been done better. Everybody on here appreciates it when the new one's to this disease hang around getting here getting their thoughts and problems out. We can learn so much from what others are going thru.
We are not alone in this fight even though it is a losing battle. I finally got the wife changed today and it is only 1PM that's a win for me. I'm thankful for that. Sometimes it doesn't take much for me to feel better I'm trying to do the impossible and some times it really feels like it. But we don't give up, we learn from others here what worked for them and their LO's.
When I'm on this form each day most of the time things aren't going good. But as I read what others are going thru or what I write about, I start to feel a lot better. It's starting to be a GOOD day. Hoot
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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