Feeling Fragile

Biggles

I feel so sad. My DH of 54 years has VD stage 5 or 6 our partnership over the years has been so strong, we've worked together in our own business, sailed together, flown together, had our children together, and always relied on and supported each other, and now it's just me calling all the shots. I love him dearly and I am very independent, I have a very small business, I go kayaking always taking my DH, a picnic and our puppy, we have joined Sailability and its marvellous, I paint and I sew and I cook so I have lots that I do. We have our daughter and 3 grandsons living close by (they are too busy to see us but we talk every day which is lovely) but I can be doing any one of those things and something will set me off and I will cry, sadness overcomes me; I can be talking to someone and just the tiniest bit of kindness will set me off again and I will be hiding behind my dark glasses. I don't think I am ever truly happy anymore. I know all the positive talk but I find this whole thing so overwhelming and I'm so sad at this point.

SDianeL

So sorry. “we understand how you feel. This terrible disease robs us of so much. The mourn the loss of our loved ones and the life we planned together. Sadness & depression are common in caregivers. There is nobody to talk to because most people don’t understand. Perhaps you could find a counselor experienced with dementia and if you are depressed ask your primary doctor for medication. It’s OK to cry. Come here often for info and support. Hugs.

Jgirl57

Your feelings are understandable but also very serious. It can be overwhelming when the waves of ambiguous /anticipatory grief hit you. When I found myself stuck in this sadness I burst into tears at my primary physicians office and she started me on medication and recommended counseling. I have not done the counseling but I did begin medication which helped tremendously . I lean on this group for support and knowledge . You are doing an amazing job keeping up with your personal interests and hobbies, but you can no longer fully share the emotional joy with your DH. It’s ok to feel the burden of this sadness but be sure you talk to your physician about your fragile feelings. ((( Hugs)))

Biggles

https://alzconnected.org/discussion/comment/231023#Comment_231023

Thank you SDianel for your gentle comments. Strangely I don't think I actually feel depressed, it's more I feel nothing and then I feel sad. What makes it perhaps a little harder is that my DH suffers from APHASIA, so verbal communication is made even harder. You are so right there is nobody to talk to, this forum is the best place, it has been my lifesaver. I do speak to a Councillor every 6 weeks or so but honestly, it's a waste of time, she has no understanding of this disease even though she looked after her father. Thank you for the hugs.

Biggles

Jgirl57 thank you for your help. Can I ask you what was the medication you were given? My doctor is quite reluctant to hand out medications. Counselling has been hopeless but this group is fantastic. Thank you.

Biggles

ImMaggieMae

Biggles, sometimes crying is the best thing you can do. It at least releases some of the profound sadness and anxiety you have to deal with on a daily basis. Sometimes I think we try to hard to get things back to the way they were before dementia, to go back to that world we lived in before. That world is gone, at least with our spouses. We live with them in a different world now. For me it’s better to think of this place, this forum as the world we live in now. These are the people who truly understand. Most of the people looking in from the outside are clueless, There are a few friends or relatives who may be close enough to understand, but most have fallen away because they have their own lives which are nothing like ours, and they don’t know what to say or do to help. The others in our little group here understand only too well.

The other thing that helps me is to try to live in today, not some future that we really can’t predict. Not everyone has the same symptoms or reactions to medications. You don’t have any more control over the future than you do over the past. The past is over. You have memories, good and bad. But you can’t change them. Anything can happen to any one of us. We, or our spouses could drop dead tomorrow of a heart attack or walk out in front of a bus. We just do the best we can, just for today. There are a lot of people in our little world here that can offer suggestions and good advice about things to try that worked for them. There are little ways to make things better, or easier, at least temporarily. And when the next thing comes up, they can help you find a way to deal with that. We’re not easily shocked or surprised. You always have a shoulder to cry on and a place to vent.

Carl46

Biggles, feeling nothing and then feeling sad sounds a lot like depression to me. I don't cry much, because I was trained not to cry, but I know how you feel.

My PCP started me on Zoloft (sertaline) after my son died. I was telling her I wasn't really all that depressed and a tear started running down my face and I saw her looking at it and admitted I was depressed. The medication made a huge difference in my life. She also referred me to a psychologist, but you already have that.

I took Zoloft for 20 years, until it didn't work anymore, and my PCP switched me to another med. I wouldn't voluntarily be without it. However, I was depressed for many years before my son died, just untreated. If you would be happy if not for your husband's illness, an antidepressant might not help. But I don't think it would hurt to try.

Jgirl57

Biggles, I take 25mg of Zoloft . It has helped . There are other medications that are helpful but this low dose is working for me. I wish peace for you on this isolating journey.

BPS

You said "I can be talking to someone and just the tiniest bit of kindness will set me off again and I will be hiding behind my dark glasses. I don't think I am ever truly happy anymore. I know all the positive talk but I find this whole thing so overwhelming and I'm so sad at this point." and I am the same way. I put on the happy face when others ask how things are going, but if anyone truly show concern or caring about how I am really doing it gets to me. I can talk about how my wife is doing or anything else but I can't really talk about how I am doing or how I feel. I find it easier to say how I feel here with people that I have never met but really understand then with close family.

Biggles

https://alzconnected.org/discussion/comment/231039#Comment_231039

https://alzconnected.org/discussion/comment/231075#Comment_231075

Thankyou Carl146 I'll speak to my GP next visit.

Biggles

Thank you Jgirl Zoloft has been mentioned a couple of times now I think I'll talk to my GP.

Denise1847

Dear Biggles, I am sending hugs to you. We know how you feel. What you are experiencing is normal for all of us. I, too, cry at another's expression of concern, a fleeting memory or a song. I hold on to the hope that one day I will not feel like this. I try to tell myself that illness, loss, suffering and death are a part of life just to turn my thoughts around. Some days it works and some days it doesn't.

My doctor put me on bupropion when I burst into tears in his office. It helped me get through. My DH is in memory care now and I took myself off of it because I don't have the constant stress of caretaking at home. Try the meds and keep talking to us to get out your feelings. Write down your thoughts as in a journal. It helps sometimes to clear your head.

I now feel like the frog who jumped out of the boiling pot (due to DH in memory care). I cannot believe I don't have to worry every second as to what he is going to do next and don't have to be restricted to the house all of the time. Our emotions are very complex indeed.

CindyBum

This journey is so sad, how could we not cry? I used to hide it from people, but now I just tell them that I have become a professional crier and they find a way to deal with it. I do take a low dose of an antidepressant and that has worked a great deal. I don't cry quite as much. I'm better at managing the new, harder behaviors and my sadness, but to say I'm ever happy these days would be a pretty big lie.

I have found a few moments of laughter and fun these last 4 years, but they're more fleeting than ever because I know I'm heading back home to see the love of my life, who used to be a fireball, but who has been whittled down by friggin' dementia to small, shaky flame at the end of a matchstick.

Jazzma

Biggles, depression doesn't equal crying in my experience. It can be exhaustion, feeling dead, being so distracted that you can't concentrate on anything. I am on Effexor (Venlafaxamine) 300 mg/day and I think it helps, along with having found a good counsellor. Keep trying counsellors — in fact look for someone who specializes in grief and loss, because that's what we are all going through.

I too would NEVER cry in front of someone til this happened. Now I cry at everything, from kind words to setting up a new bank account to cover DH's memory care. I've found that most people understand, and are much kinder and more supportive than I would have imagined. My daughter has suggested I get a button that says "I cry, it's what I do" so it doesn't freak people out.

I'm so sorry you're on this journey, but all of us here are — or have been or will be. This is a safe place to come for any ideas, support, venting, crying, whatever you need. Many people here have good knowledge of medical options (medications, therapies, etc) that I would not have expected outside a doctor's office. Also many have experienced most everything you are are will be going through. Stay with us.

Biggles

https://alzconnected.org/discussion/comment/231307#Comment_231307

Dear Denise 1847 it's so good not to feel alone. Thankyou you have given me some strength to keep forging on and loving my DH.

Biggles

Oh CindyBum you have expressed my feelings. How can our larger than life, fully in control, adventure seekers be reduced to this awful state. It makes me mad and sad and angry and then so soft and caring towards my DH. Bugger!!

Biggles

Hi Jazzma I love the button idea and will definitely have a laugh and share it with our daughter "I cry,it's what I do" even typing the words I'm crying just because someone else has/is experiencing the same emotions. I agree I don't think crying is the same as depression but I will definitely talk to my Dr about some anti-depressants. Thank you so much for your comments.