An introduction

MaryG123

Hi all,

I’ve recently joined this forum and you can’t imagine how much help your posts have been.  My DH of 44 yrs. was diagnosed with bipolar disorder about 20 years ago, and we have struggled with managing that disease, especially the depression phases.  Now he has developed mild cognitive impairment, with intermittent signs of dementia.  About a month ago I faced the fact that my funny, smart, kind husband now needs me to take care of him.  He is often confused and frustrated, and some days his short term memory is nearly nonexistent.  He still works part time and drives, but I’m guessing that won’t last much longer.  I’m alternately sad, angry, kind, mean, gentle, and harsh, irritable and patient. 

DH had multiple concussions when young, a fall off a balcony at age five, and football and soccer injuries in high school and college.   He had behavioral and learning difficulties in school.   I’ve also read that people with bipolar disorder are prone to dementia, so he has multiple strikes against his poor damaged brain.

How do you gracefully manage the transition from spouse and partner to caregiver?  Thank you for letting me dump on you.  As so many have reported, my family and friend say “He seems fine to me.”

M1

Hi Mary and welcome, though sorry you have need to be here.

I think the question you are asking is the hardest of all for spousal caregivers.  And there is no easy answer.  The fact is, you lose your partner/soulmate/spouse, and it is a gradual and ongoing loss, and the grief of it hits in waves.  There will no longer be someone else to lift the other end of the board, as a friend of mine so aptly says.  It's amazing what one can learn to do solo.

If you are fortunate to have had a good and loving relationship (I count myself among those), I think it makes it relatively easier to make the transition, because you have good memories and the knowledge of love to sustain you.  It's what you do, because it's part of the "for better/for worse" promise we make.  If the relationship was more problematic, it is all the harder:  though there are many here who are in that boat and do it, none the less, which is a real testament to character I think.  And that's not just true for spouses:  there are plenty of siblings and children on these boards who also take good care of abusive/toxic relatives, just because it's the right thing to do.

I have found this forum to be an invaluable source of support and practical advice.  Others also will recommend therapy, in-person support groups, all kinds of other options.  It definitely takes a village to get through this, and it is definitely a marathon, not a sprint.  Good luck.  If you read a lot of threads, you will be prepared for the inevitable changes that loom.

LadyTexan

Welcome MaryG123.

Ditto what M1 posted. Other helpful advice is:

Look for and savor the joyful moments. Be prepared for unpredictable and chaotic days.  Network with other caregivers and support groups because the folks in the trenches have seen a lot and learned a lot.  Don't look for trouble. Dementia can bring a great deal of unwelcome behavior to you. But you may not have the same challenges that others have encountered.  Save your energy by allowing others to help. Embrace acceptance. Practice self care. Be kind to yourself and forgive yourself when you make mistakes.

Verbalizing gratitude has been a tremendous help to me, especially on the days when my DH was especially challenging. For example, when my DH was angry and calling me names because I prevented him from driving, I wrote (to myself) that I am grateful DH is still verbal. When DH used to spill sugar all over the kitchen trying to make his own coffee, I wrote that I was grateful that he tried to be independent and also grateful that he was still mobile.

Blessings to you.

saltom

Mary,  I also have a DH who suffers from Mental Illness (OCD, Severe anxiety and depression) as well as the ALZ diagnosis. I often wonder if all the various pills he's been on have contributed to his dementia. I found NAMI family support groups a great help with the mental side, and this forum is becoming my new family support. One of the biggest differences I have found between mental illness and ALZ is that w/mental illness I could set boundaries as to what behavior I would or would not tolerate such  as requiring that meds were taken, I wasn't blamed for everything that went wrong and alcohol use was limited. Fortunately DH has never been violent, but difficult at times, yes. With the ALZ, boundaries for the patient's activity or lack of can't really work, but I can try to arrange our life so upsets are at a minimum.   But it's not easy or always the most convenient for me and I'm sure I haven't handled it gracefully. The transition from spouse and partner to caregiver greatly changes the relationship. Some of this happened to me many years ago when the anxiety really took hold. We have been married for 63 years and even with the mental and dementia issues, I would do it again. I think this is the saving grace.   All I can do now besides trying to make DH as comfortable as possible is cherish the moments when the light bulb is still shining. Thank you for letting me dump.

David J

My wife was treated for depression, anxiety, and essential tremor for 2 decades before cognitive issues appeared. I also wonder about the connection between those afflictions, their treatment, and Alzheimer’s. Maybe a connection, maybe not. It doesn’t really matter now anyway. She is now mostly nonverbal, but very physically active. I visit her in MC, walk several thousand steps with her and maybe get monosyllabic answers to questions. Not daying this id where you are headed; as they say YMMV (Your Mileage May Vary).

MaryG123

Thank you all so much for your kind words.  I do need to remember not to borrow trouble, and enjoy what we have today.

RobertsBrown

Hi Mary,

I echo the advice given so far.

One more thing....  If your DH is aware that he is starting to slip, and he is able to talk about it, there is a brief window of time where you can ask/decide how he would like things to go.  This is no easy conversation, and if you manage to get something real said between you, it will be forgotten, BUT it may help you down the road to know that you are doing things you agreed were right.  My experience is that agreements and understandings have a short shelf life, and I wish I had more courage to have had blunt talks back when they still had some meaning.

On the list should be getting legal signatures where you will want them.  Power of Attorney is a biggy.

Rob-

jmlarue

Letting Go

I think the disconnect came naturally, over a long period of time for me. If I would try to describe the process, I say it was like letting go of some part of who my DH was every single day. Who he was, what he was, how he behaved when he was happy or sad or angry. Little things, like his morning bathroom routine, or how he'd sit in his favorite chair with his legs crossed just so, or his quirky habit of putting the cream in his cup before pouring his coffee. One day it was different or simply gone. 

When his dying brain caused these little, incremental, and cumulative losses, I had no choice but to let go of any expectation that he would ever again understand our little "inside jokes" and we would never again finish each other's sentences. DH was my Mr. Fixit. There was nothing he couldn't fix and over-build in the process. The shock in seeing him struggle to change a light bulb was heart-breaking. He did chores (like getting the garbage out for garbage pick-up). An unpleasant, but mindless, chore that he'd done in the same way, on the same day, for over 30 years. One day -boom - hasn't a clue. I couldn't even coach him on which color bin received garbage (gray), recycle (blue), or yard waste (green). "What's 'blue'? he asked," as he dumped everything in the green bin. All of these little things (and hundreds more) transformed my DH into a person I did not know and who didn't really know me. He doesn't act the same, or talk the same. The grown man has become a child. The harsh truth is that my husband, the one I fell in love with as a teenager and spent over 50 years with, just wasn't here anymore. He has become Benjamin Button and I am Daisy who cares for him as he regresses into infancy. The worst of it is, he is now like that petulant, spoiled child with no filters or sense of right or wrong. His emotions overwhelm him and he lashes out in anger and tries to hurt people. Nope. Definitely not the man I knew and loved.

I didn't need to try to disconnect my role as spouse and accept my new role as unpaid caregiver. The dementia forced it upon me. I wish it wasn't so, but there it is. I had to let go in order to survive.

Bob in LW

MaryG123 wrote:

  He still works part time and drives, but I’m guessing that won’t last much longer.  I’m alternately sad, angry, kind, mean, gentle, and harsh, irritable and patient. 

If he has been diagnosed with dementia he should not be driving.  If he should cause an accident, YOU could be legally responsible because, knowing his condition, you should have stopped him from driving. That is the advice that my SO's son was given by his attorney.

saltom

jmlarue, We are not quite that far along, but I can see it coming.  Thanks for your post. It has really helped me put reality in focus and try to remember that, like mental illness, it is the sickness not the person attacking me. My DH is still a very gently man, but my being attacked is the only way I know to put it after cleaning him up from bowel incontinence four times yesterday.

MaryG123

Rob,

I bit the bullet and broached the subject of a DPOA today, after I read your suggestion.  DH agreed that it would be a good idea!  Thanks so much for encouraging me to do the smart thing!