suggestions please(2)

littleme

Hi

DH has been in residential care for 4.5 years, now late stage 6 or possibly into 7. Moves around independently at a slow shuffle, has had a few non-damaging falls. Knows me by sight, sometimes by name, calls me wife, says he loves me, can't believe we are married or have 2 adult children and a grandson.

Only person other than myself who has seen him in last 12 months plus is DD, he recognises her by sight as a regular visitor. Doesn't recognise the lovely carers who have looked after him for 4 years.

Friends and family ask to be remembered to him !!! as if that was possible. 

Also ask how he is doing.

What sort of answer can I give to that question? Usually I just say, 'no change'. Should I go into painful [to me] details of his physical failing, and his non-existant memory??? Especially when they ask every few days?

amicrazytoo

I’m so sorry, it’s like people think there could be improvements, but not with this disease, at least not yet. I so wish people would stop asking. It’s so hard to keep a strong front that things are better, when they are not. I feel your pain.

Lorita

I'm sorry, Barbara.  I know how hard this is for you.  Unless it's someone you want to confide in you might tell them he's declining but you're handling it.  They probably don't know what else to say.  

I'm glad you get to see him and that he often knows you.

JDancer

I tend to overshare. I want people to understand and I suppose I'm fishing for sympathy. I don't think you should sugar coat his situation. "Not well, thanks for asking." "He's declining, it's a struggle." These are a few of my replies.

Ed1937

Sorry it's such a hard disease. My stock answer, unless it's someone really close, is to say she's progressing.

aod326

I think it depends whether it's someone who really is concerned - for you both - or just being polite, wanting you to know they're thinking of you. I am lucky in that I have a few friends who really are concerned and I tell them the truth. Mostly I say "about the same", or "up and down". With either response I end by saying "Thanks for thinking of us." But if there are things that cause you emotional pain, don't feel you have to tell people at all. (Although if it's someone close, you may find it helpful.)

When people say to say hello, or send their love, I just say I will do. (And I do, even though he doesn't communicate at all.)  It's tempting sometimes to say "you realize he can't remember anyone?", but they mean well. And it's better than hearing nothing, from the friends and family that drift away! My only exception is with his close family, who for the longest time refused to believe his challenges, even after he moved to MC.

Crushed

Truthfully its been several years since I remotely had that as a problem.  2 1/2 years ago I told everyone there was no sense visiting.  She remembers no one. Its a horrible disease.

You wrote

I want people to understand and I suppose I'm fishing for sympathy

 This is the best sympathy fishing hole around

Marie58

littleme, I think it depends on who is asking. Some people don't know what to say and "how's he doing?" seems like a reasonable question to them. For most people I think it shows they care. Others, who you are closer to and have some understanding of dementia, may really want to know. You may be able to say more to them if you want, and they can offer support.

ladyzetta

Dear Little,

Marie, said exactly what I was thinking. My DH was in MC for 2 years, Everyone asked but most out of politeness the ones who really cared like family and close friends I would give them a bigger answer. I did appreciate the asking because I knew they all cared. Take Care Hugs, Zetta 

chrisp1653

Looking back at the things people would say when Barbara was still alive , ( and the things they say now that she has passed , ) my impression is that showing someone that they care is a difficult situation for most people. Very few people really know what to say, or what questions to ask. I believe that most folks would rather be selling the Encyclopedia Britannica door-to-door than bring up the subject of someone's mental condition.

I always try to put myself in their shoes, and answer truthfully, but maybe in a somewhat abbreviated fashion. In other words, I try to be sweet, but short.

CJ1961

Hi Barbara, no pearls of wisdom here but wanted to say a gentle sympathetic hello, and glad DH still knows and loves you. I agree with Marie, depends on who's asking and their history of interactions/ being there & wanting to know compassionately or just to be PC. Also likely different in your peer group a little older than my EO situation, where friends' denial of what's happening no matter what I say or what they see is a necessary self-protective mechanism that keeps them psychologically 'safe' . So I've definitely given up on sugarcoating, and am most forthright with those who consistently irk me (euphemistic in extremis) with inane comments to DH '"You're gonna beat this, mate! You look so well!", or to me "You guys really prove love conquers all!!"  FFS. This from people who know 2020 wrought me twice COVID cancelled major bowel obstruction surgery, breast cancer, lumpectomy, then mastectomy 2 weeks later due to metastases, septicaemia and delirium, 6 days ICU and 46 days hospital over 5 admissions, no visitors COVID, plus 16 chemotherapy sessions, baldness and weight loss now 46kg (100lbs). So I'm not playing games any more, including even fishing for sympathy except for the 2 or 3 friends who've become more golden, and my 2 sons whose love and support sustains us both.  The rest I just answer it's horrific and relentless and I'm barely coping.

As I hinted, mainly just wanted to say hello to you again, knowing you're only a few kilometres away. Enjoy this balmy Adelaide Autumn weather (so sad for the East Coast floods, but) Take care of yourself,  Coralie  xox

littleme

Coralie,

we have all been wondering how things panned out for you.  Glad to know you are still hanging in there. If you want to gain some weight back quickly, I have some I'd love to donate, I have much more than I need! lol.

Just been given an appointment for my covid shot next week at the GP. DH has had one, his second should have been out of the batch that went to Perth by mistake. No news yet of when he gets a replacement.

(((hugs))) and always glad to hear from you when you drop by.

Barbara

Ernie123

Hi. So many difficulties arise dealing with this disease! My DW is now living in care, late stage 5  or stage 6. Meds have calmed her delusions and aggression so she is generally calm and reasonably cooperative but she has no short term memory and now has difficulty recognizing children and grandchildren. Last week when visiting she told me I had to leave because her husband was coming soon! But that is not common. When friends ask me about her I tend to be quite forthcoming and honest about how she is. I believe it is important to treat dementia like any other ailment. If someone had a hip replacement and a friend inquired it would be normal to address issues of pain, mobility and how physio is progressing. I try to be matter of fact and hopefully educate a bit because most people have no idea about what it is like to live with dementia. Anyone I consider a friend gets a two minute update with no sugar coating but  more of a clinical tone. If there are questions, I answer honestly. Sometimes a good conversation ensues and I appreciate the opportunity to share my experience in as objective way as I can. I think most people are uncomfortable asking about dementia because they know how difficult it is for the caregivers. But they are also curious about the dramatic changes dementia imposes on a family. So I acknowledge that it is difficult but we all have more capacity to deal with challenges than we realize. If people ask how I am doing, I am honest. As time passes, there are more good days than bad, just the reverse of last year. I describe the supports that are out there, like this forum, Alzheimer’s support groups, family, neighbours. Maybe I overshare but as I said earlier I want to educate as much as I can about this disease and how it affects families and not just the individual with the condition. But I try to do it in a matter of fact way, not looking for sympathy. Doing this is in fact a kind of therapy for me. It helps me come to terms with my new life.