More slippage, more isolation

M1

Almost hesitant to post this, as I'm thinking out loud. But I am saddened. We have had one couple that we have remained close to through this whole journey, they have been faithful visitors to my partner and are about the only outside contact she has besides me. And yet now I feel a shift, and they are slipping away, too. They have been almost angry with me over my recent illness, as though it were my fault due to somehow not taking care of myself--when truly, it was as accidental as could be and nothing I could have done differently. They now express anger that I continue to visit her faithfully, say I ought not to go so much (only a couple of times a week at present), that I should move back to town (not feasible), that I should let her neglect herself and refuse care (if I don't bathe her, she doesn't get bathed), as if that would somehow hasten her demise. I'm a bit baffled and as I said, very sad. I guess late stage dementia just becomes too much for almost everyone. I feel misunderstood, somehow. I don't think they would treat each other this way if it were one of them who was institutionalized--but somehow they are frustrated with me for being a faithful spouse.

We used to socialize a lot together before my parter got worse--but never any more. They have refused my invitations to come for meals, and certainly have not extended any to me. I sense their real loyalty was to my partner (admittedly very charismatic) and not to me. So..another loss. Perhaps time to move on and just let them go. I'm not unhappy, I'm actually feeling some better physically and more than busy with things to do on the farm as I feel up to it. But..there will be no real moving on for me or ability to establish new friendships until she is dead and gone, I think. Hate losing a friend, but I sense I already have.

Palmetto Peg

I'm so sorry to hear this, M1. This is the time for friends to rally around, but I know it is just too hard for some. They mean well with their comments to you about taking better care of yourself, but when someone you love as dearly as it is obvious you love your partner is suffering, I think it is impossible to not put their needs ahead of our own. If the friendship was more with your partner than with you, I can see why they may be pulling away because it is too hard to see her in this state. The best thing you can do right now is just let them go and focus your attention on your health and giving your partner whatever support you can. You have many caring friends right here on this board, and even though they aren't with you in person, they are all with you in spirit. Take care of you, and know that you are important to your partner, and to all of us you have helped through this board. Prayers for both of you!

Denise1847

I am so sorry M1. I must be misunderstanding. Are your "friends" really telling you that you should neglect your DW? It doesn't appear that they are really friends. I am learned that you really find out who your real friends are when there are real problems in one's life.

Since my DH's illness has progressed, we only have one couple who will invite us to dinner in a restaurant once a month. I imagine that it is difficult for them, but they still asked us out. Everyone else has left the scene.

jfkoc

The list of losses seems to be unending. Maybe because this "journey" is so long.

It is impossible to guess what prompts the behavior of others but no matter, you are feeling a loss.

If you truly enjoy the company of the couple in question then perhaps may one more attempt to get together. Suggest lunch at a restaurant? If they say yes then go. Have an interesting topic or two to discuss and be certain to focus on them and what they are up to. I well remember making calls and announcing that I am living virally and want to know what they have been up to. My husband was not discussed. It would have been too hard for them and really I needed to focus on something else.

I do suggest that you find something that interests you. Perhaps a hobby put aside long ago. Maybe just something new or that you have not done in a long time. Doing this may bring some new people into your life.

So now forget everything said except the first two sentences.

Judith

Dio

M1, so sorry to read your post. I don't have the whole picture, but perhaps this couple is upset because you have not been heeding their advice--rightfully or wrong--but to them it may feel as if their efforts to help you have fallen on deaf ears. Whether they're true friends only time will tell. I say this only because I have been frustrated to the core when a friend who was in a bad situation but wouldn't heed a single advice from our circle of close knit friends. She continued to go down in a spiral. While we didn't withdraw from her, it was really hard to watch her decline thus I had stayed away for awhile. Perhaps this is what this couple is wrestling with: Trying to help you, to no avail, therefore they have chosen to stay away. In any case, it is true you have to take better care of yourself. Your decisions are yours alone. What works for you may not work for others. At the end of the day, you've got to live with these decisions and be comforted in knowing that you've been true to your heart. Let the rest be damned.

Jgirl57

Sorry you are feeling sad…….; this long good bye is awful all around .

housefinch

I’m really sorry to hear this. Sometimes difficult situations reveal people’s real natures, I guess. Maybe with time they will either get it together and be supportive, or you will discover some new friends who really have their act together. I’ve found that I only need a few close friends who “get it”, and sometimes it’s my more recent ones who have surprisingly been emotionally more attuned. They have endured more life difficulties and learned from them. Try not to despair—-you will meet people even in the future who are wonderful fits for you. Sending you health and courage.

jfkoc

Stumbled upon this afternoon..." One must follow the river. One surely knows not the river, from this or that spot---its true depth, its temperature, its appetite" John Dtury

Quilting brings calm

It does sound like they feel you should be taking better care of yourself …. But should and able to aren’t always the same thing. Plus some things are not preventable. Please focus on yourself, and to the extent you can, your wife. Do not waste time, energy, and the little peace you have on trying to figure out what is going on inside this couple’s heads. They won’t understand until it happens to them.

Try to develop some hobby that fits with your physical abilities: reading, walking, puzzles, crafting. Some people sew quilt tops - cutting fabric and sewing straight lines is really all you have to do. Fabric shops love customers

https://www.missouriquiltco.com/blogs/missouri-star-blog/artist-spotlight-quilting-marin

Editted/ because I originally used male pronouns and I don’t know M1 well enough to assume stuff like that

Jeanne C.

M1, I've been thinking about you all afternoon. I'm so sorry you're going through this. You're a great caregiver and, frankly, a mentor to us. Your advice has helped me so many times. My suggestion is to get a good night's sleep. Then try to take a step back and objectively think about how you would advise one of us. If I were in your situation I would probably confront them. But I don't think that's your style. Do what feels right for you.

You have been a champion for your partner. You already know to take care of yourself. And you have a whole group who will be there for you.

Joydean

Maybe they are just getting scared for their own sake. They have been really good friends to both you and your partner all these years. They spend time with your partner and did so when you could not. Maybe they are also afraid this could happen to you. No one can say what they are going through. If they call you be their friend. That’s just my opinion. Do the things you can do around your place that bring you some peace.

this road we are on and for many of us we have been going down it for a very long time. I used to try and remember the good times,the past before Alzheimer’s, but I realized that it hurts too much looking back. So I now just live day by day. If some little thing can make the day good I hang onto that until the next day starts. It’s all about today and only that. I don’t ever try to think about what if. I don’t think about when or if this will ever end. TO DAY IS ALL I HAVE! Be good to yourself! Prayers for you M1!

Joe C.

M1, This journey is difficult enough with watching our LO slip away but adding the loss of long term friendship just adds to the burden. I think we all get unwanted advice from friends along this journey but suggesting that you stop care for your LO is not their place. Perhaps the message they are trying to convey is that you currently needed to be focusing more on your health and they are just doing a poor job on at communicating their feelings.

midge333

M1, as you well know, the terminal end of dementia is hard to watch. Perhaps they can't bear watching your DW's decline? Perhaps they feel that your caring for her is prolonging her suffering? It sounds like they have been good friends. I am sorry that you have this added stress on top of the stress of watching your DW decline.

Jo C.

Dearest M; all that has been happening and now this too - I am deeply sorry for this heartfelt stunning situation. You may be right; they may have been more bonded to your partner and you were part of the whole that came with that and a basic friendship formed. Still; it is hurtful and how does one deal with hearing that;; how strange that must have felt. I can only imagine.

Your beliefs for your partner and yourself are real and what counts . . . the friends may be disappointed and concerned about your health and status; but it seems they did not have a friends way of communicating nor supporting.

Take a breath, I hope you can put this away as much as you can and do what you think and feel is best. Tincture of time may modify this breach and lack of kindness; will have to wait and see.

I am glad to hear that you have improved quite a bit, wonderful news dear friend. I send a big warm hug to a very special person, (who just happens to have the best, sweetest, cutest grandchildren to love and play with.)

J.

Howaboutnow

I’m sorry you are feeling the weight of losing last friends.

Dementia scares alot of people that luckily see it only from a distance. And i get it. It’s like a lot of ugly-life-things we try not to see for fear of it becoming part of your own life. People step away. It has happened to us time after time.

I like what others have said, that a new (or renewed) interest in an activity or hobby will put you in place to find a new friend(s) without the weight of “what was” being the focus or the only tie that keeps the relationship alive.

I appreciate you might feel stuck with DW in MC. You still hold tremendous responsibility for her. Maybe as your own health rebounds, you can allow yourself to build some of your life back including human connection outside of dementia. Sounds exciting to me,,,sounds freeing.

Wishing you all the best. And you have lots of friends here 😊

toolbeltexpert

M1 others have covered what might have said. The visitors that still visit my dw seem fewer and fewer as she declines. Some that have never visited expressed they could bear to see dw is such a shape.

I have started a hobby I used to do and it has been extremely helpful for me to be able to socialize with others than the folks at the memory care. Sorry there are so many aspects of dementia that to most are the unseen losses for both the pwd and the caregiver.

Phoenix1966

I was so sorry to read this. The losses never seem to end with this disease.

I know we all need human contact from time to time (the warmth of human connection, I think, needs to be actually warm/physical every now and again) and this will leave a void in your life.

While online interactions aren’t the same thing, please know your presence, insight and sharing has touched many lives and you have forged connections while you shepherd your LO through this long day’s journey into night.

M1

I so appreciate all your comments and thoughts..and cyberfriendship, which is quite quite real. I will give them the benefit of the doubt and see what happens, that's about all I can do anyway. But i do sense the change, and it feels like another stage in the journey.

Not much time or energy for new things yet-as i said, I'm not really unhappy, i can stand a lot of isolation as I'm a pretty extreme introvert anyway. The granddaughters take up a lot of slack. As for other things i think it's just not time yet.

jfkoc

Thank heaven for little girls.....

harshedbuzz

I'm sorry @M1

Are these the same friends who'd been so diligent about visiting when she was first place in MC? Perhaps they're struggling with sadness and a little burnout as they go through the loss of this once vibrant friend. Pity they can't have your back and are blaming the victim here.

Most people just don't get it. Just before dad was diagnosed with dementia-- after the liver failure debacle in FL-- it was discovered that he was having a recurrence of prostate cancer. He chose to treat with ADT (twice yearly injections) and mom chose to continue treatment because she believed it to be what he wanted. My mom's sister railed at me constantly that I needed to "shut this down and let him die". TBH, it wasn't an onerous treatment regimen, and it had the potential to reduce the risk of fractures and discomfort, so I personally supported mom's choice. Thankfully, she never expressed this sentiment with mom. It was ironic coming from her as she currently had 2 sisters with dementia who were slightly further along in the disease progression.

I am sorry your LO continues to be resistant to care from anyone but you. That makes things so difficult.

HB

White Crane

Dear M1, anytime we lose a friend it hurts and losing old friends hurts even worse. I don't know why people pull away but they do. We have had friends do the same thing and at first it hurt and then it angered me. Finally though I needed to accept it and be even more grateful for those friends who stay close. That said, I am so sorry this has happened and understand the feelings of loss and hurt. I know it's not the same but everyone on this forum cares about you and supports you. I wish you peace as you deal with this loss and prayers along with virtual hugs.

Brenda

ghphotog

If you are sensing that your friends are drifting away, for whatever reason, just keep on keeping on the way "you" see as right. That's all you can do. Stop reaching out to them and let them reach out to you at some point and maybe in the future their reasons will come to light. Maybe they have their own reasons, who knows. Maybe it just seems they are drifting away or maybe they just are preoccupied with issues of their own. Life happens to all of us.

I really hope though they aren't insinuating you are at fault somehow for you're recent health issues or insinuating you should change how you care for your partner. They will never understand without ever walking in your shoes, that we have to accept.

I sometimes wish our families would take care of my DW for just a weekend. They couldn't handle it for a day but we do it day in and day out 24/7, year after year.

I hope you continue to keep their friendship if even superficially.

Jeff86

M1, I just want to add one more voice here of sympathy and friendship. The losses never seem to end on the AD journey,, and friends/family members who will walk beside us drop away as the road gets ever more rocky. Being a spousal/partner caregiver is a staggeringly lonely experience, and progressively more lonely. Even introverts get lonely—I know! :-)

What I can assure you of is that your friends here will be steadfast. We will walk the journey with you all the way to the end, and beyond.

ButterflyWings

(((M1))) I too am sorry for this sad and frustrating situation. Truly it seems like when it rains, it pours. I was just saying to someone the other day that I need to find out who put the "kick me" sign on my back as some of the choices people are making in relating to me are unkind at the very least. Others have even used the word "evil" (related to attempted abusive, exploitative actions). I am so glad for you, that you are not experiencing any intentional hateful behavior, I don't think.

Like so many have said, you will never be without true friends here in this circle. I think it is possible that the others are also "true" friends, just unable unfortunately, to respond better to you and your dear partner/ spouse's reality as it is reaching the dreaded later stages. I fear some people see caregivers as a little bit superhuman, if and when they "see" us at all. It is almost like we don't have normal feelings or are totally immune to things generally. I say this because some of the things that have been said to me, are really unbelievable. But if I were to react like the "average" person would, I'm certain there would be shock and awe, as if I was out of line or maybe overreacting due to my caregiving overload. It is a lot like we live in an alternate universe. I guess we do.

Anyway, I understand what you are experiencing, having people who were close friends of us as a couple, but once our "couple" status dissolved due to DH's progression, there was nothing for them to do with both of us any more. Once no recognition or even rational conversation was possible, they drifted away. There is an occasional call to see how he is doing, or how I am, and that is it.

In lieu of socializing with us both (dementia has nipped that in the bud) the new option of providing respite for me if visiting with him, requires caregiving even if only for an hour. That is something only 1 of MANY friends (his) and 1 family member (mine) have offered and meant it. I took them up on it only a couple of times out of necessity, and for that I'm grateful not to have needed more. It is very possible they'd have had to stop sooner rather than later. Ideally without giving me the kind of unsolicited advice you have received. Back to where I started this post, it sounds like these folks are just beyond their capacity for compassion right now, and are not able to imagine that you are well beyond your limit as well. Even if they are well meaning somehow, their bedside manner leaves much to be desired. Who needs tough love when they are at the end of their rope as you surely must be?

We appreciate and love you as only forum friends can. I am hoping for peaceful moments, calm, and comfort for you and your LO.

ImMaggieMae

I’m so sorry your friends are acting this way. It certainly isn’t fair to you. It may be that it was easy for them to visit and be friendly with her when she was high functioning, but it may be too hard for them to bear seeing her now that she is in the late stages and probably not able to communicate well and going through other disturbing late stage symptoms. That shouldn’t make them critical of you though. Perhaps it is their frustration with the whole situation which they can do nothing to fix.