My grandpa had tons of friends. He also came from a large family. His parents passed away a while back, but most of his siblings are still living. Five to be exact. My grandpa was also close to a lot of his cousins. Then, he got Alzheimer’s. His social circle got smaller and smaller throughout the years. He is now in a nursing home. Me and my dad are the only people who visit him on a regular basis. Only once did one of his brothers drop by. He has been in a nursing home since last April.
My dad says this is common. I hope he isn’t right.
Well, in 1995 my great-grandmother got Alzheimer’s as well. We moved in with her to care for her until her death a year later… and no one in my extended family, nor her friends, could deal with visiting her any more because it was “too sad.” Up until it became clear that she was dying, people visited her frequently.
When I was in high school, a friend of mine got bone cancer, a very aggressive form of it. Out of all of her friends, I was the only person who visited her and I hadn’t been all that close to her before she became ill. After I saw how she’d basically been written off by everyone she knew, I felt like I had to continue visiting her. We became close over the next year before she died.
I remember very clearly the immense resentment I felt when a large number of her so-called friends showed up at her funeral. Some of them even cried. It was one of the most difficult things I’ve ever done not to march up to those girls and hiss, “If you were really so fucking sad to lose her, you might have dropped by for a quick visit or at least made a phone call to see how she was doing.”
It is difficult for people to visit Alzheimer’s patients, especially in the later stages. It is painful for someone you know and loved not to have the faintest idea who you are anymore. I guess they figure that since the person doesn’t remember them, why put themselves through that pain?
Other than Alzheimer’s patients, I don’t have a clue. I have never understood it, and I think it’s sad. I know I hated visiting my mother in the nursing home the last six months of her life - I hated seeing her helpless, I hated the place, I hated the smells, I hated never knowing if she was going to know who I was or not…but I went. She was my mother.
People hate to be reminded of their own mortality.
It’s weird how very old and very close friends seem to vanish in the face of terminal illness. It really surprised me. I’m talking about my mother’s friends of 30-40 years!
And to view the other side of the coin, when my mother was dying of cancer, she had friends from her bridge club who came and saw her with astounding, and immensely graceful, regularity. I don’t know if they were that close to my mom when she was healthy, but when she was dying, they were the best. Came often, kept the talk light and interesting, and didn’t stay long. If mum couldn’t talk, they’d talk to her, and if she dozed off, they’d just keep her company a bit. And then come back in a few days.
Ladies of the Castlegar and Trail, BC bridge clubs–I’m in tears, remembering your kindness and your company. And Auntie Norma, too.
This is one of those situations that is incredibly emotional and stressful.
Obviously you hope that we all do our best when it happens, but it can be a balancing act between respecting the sick person and dealing with the other people in your life.
Both my parents have been very ill for months, but I don’t feel up to posting a thread about it yet.
I am getting wonderful support from friends, family, hospital and care staff. Plus my own situation (job, house) is fine. If I’m still emotionally stressed, I feel compassion for people who don’t have such a stable structure to help them.
I can post two short experiences:
when I was in my early twenties, one of my best friends and his wife were killed in a car crash, leaving 3 children orphans. Another friend and I rushed to the hospital to make sure the kids were OK. Then we started contacting other friends to alert them, whilst travelling to my friend’s mother to comfort her in her grief.
When we rang the bell, she answered the door with a puzzled smile - she hadn’t heard.
I managed to break the news to her, call a neighbour and a doctor etc. But I think I was in mild shock throughout.
at a nursing home, the staff told me that the number of visits to the residents varies enormously. Some people are seen several times a week, some on their birthdays only. And some never get any visits.
While it can be difficult for old friends to cope with the onset of regular illness, it is especially hard when Alzheimers is the condition because as has been mentioned, it can effectively kill the personality of the sufferer while leaving them living and breathing as a human organism.
I wouldn’t be too hard on the friends/family ‘abandoning’ them as you say. It is great that you and your dad are still visiting grandpa, but in all honesty, grandpa probably doesn’t give two tosses who is around him nowadays. In fact, if there were too many people rocking up, it might just add to his confused state and exacerbate his symptoms.
Sometimes even the human animal can behave instinctively, and letting go/casting off of sick friends and relations can be a good thing under some circumstances.
Is it possible something else is going on besides sheer selfishness?
I have a lot of “friends” If I wanted to give a party (in the hypothetical event of my house ever getting clean enough to attempt such a thing) I could probably come up with 50 people or more to invite.
But intimates? There are maybe 5, maybe, that are close enough that they would know their presence/calls would be a help not an intrustion.
I have not gone through my own serious illness, but I did have a daughter who was very ill and then died (today is her birthday by the way) and during that time I had very little spare energy for people. Unless it was someone I didn’t mind being around unshowered and in my pajamas, I couldn’t really bear the level of social “artifice” needed (not that I necessarily was in my pajamas, that’s just the marker for the level of intimacy needed)
There is also the problem of communication. In a group of 50 friends, how does the information that someone is sick and needs attention get around? If someone doesn’t know the whole situation, how would a phone call go? “Hi, I heard you had…is it cancer?” Serious illness calls for a set of social skills that are rarely taught.
That the helpful ones in Savannah’s mother’s case were members of a structured club doesn’t surprise me. Much easier for everyone to get the same information and feel for what is needed
This whole thread has made me realize that if I am in such a situation and would like more from people, I need to let them know. Email is great for that kind of communication. Think how much easier it would be to write a mass email that says “if you feel like it, I could really do with some visits, but if you could just come watch TV with me and not make small talk” rather than to make a phone call to a specific person asking for that level of interaction.
My heart goes out to all the posters in this thread who have lost someone or are dealing with the serious illness of loved ones.
My mother went through a series of major illnesses during her life, many of which put her in the hospital. She taught me some things I have found very helpful: if someone you know is in the hospital and able to receive visitors (i.e. not in ICU) by all means go visit. However, be very alert to the signals the patient gives. People in hospital nowadays usually are not really feeling up to long visits - by the time they are ready for company the insurance company sends them home. Go in, leave the flowers/candy/other gift if appropriate, hug/kiss if appropriate, say a few words to let them know what is going on in the part of the world that you share and that they are being thought of, then leave! Don’t stay forever - hospitals have routines, and someone in the hospital really isn’t in shape to be entertaining guests for long. But do let them know you are thinking of them.
I do think it is sad when family members don’t visit someone in a nursing home who is still functional mentally. I understand it if the patient doesn’t know who they are, but many nursing home residents are fine mentally (mostly) and are there for reasons of physical illness. My husband worked in a nursing home when he was in LPN school, and his mother was Director of Nursing at the same home before she retired. Some of the stories they would tell about patients getting all excited, getting dressed up, etc. for their birthday or Chrismas and having no one show up would break my heart.
My mother went back into the hospital the day after her 53rd birthday, when her sister (who was a RN) happened to put her hand on Mom’s foot while adjusting the bedclothes and discovered it was ice cold. Lifting the sheets, she discovered it was also black. Hospitalization for gangrene ensued, and Mom died three days after her birthday. I didn’t know to check her feet - I thought the nursing home was supposed to do things like that. Another reason why, if you have relatives in nursing homes, to visit. In all honesty, many nursing homes are understaffed and a lot of them have a high turnover. If the patient has relatives who show up and complain when things aren’t done correctly, things are much more likely to be done correctly. And don’t call first.
Sad but true. When my grandpa started having a hard time, all of his children and children-in-law, except for my parents, basically wrote him off. Worse yet, in an attempt to justify the fact that they just didn’t want to deal with him, all sorts of imaginary grievances suddenly came to light-- “I’m not visiting him in the nursing home because he did X to me when I was 15.” Bridges were burned between siblings that took years to repair.
I can’t get my husband to visit his grandmother, who’s been in an assisted living facility for the last year and a half.
She has Alzheimer’s that’s advanced quite a lot. She doesn’t know my husband anymore - when she thinks she recognizes him, she mistakes him for her deceased husband (and subsequently flirts with him and gets quite… explicit. At least twice she’s gotten angry with him for “going around with another woman” and explained graphically what sexual acts she was planning to deny him as a result - very disturbing for him). She also no longer recognizes her daughter and only intermittently recognizes her sister and oldest friend - visiting her is seriously traumatic for a lot of people and often just scares the bejesus out of her. At some level she knows she should recognize us, but she doesn’t and it freaks her out. She’s also started to get combative with people.
All in all, it’s not a good thing for anyone. The staff of her (really very nice and quite reputable) assisted living facility tell us she’s a lot calmer when nobody from the family visits. She can tolerate my visits and visits from other people who are connected with the family but not people she was close to (one of my sisters in law, her second son-in-law (my husband’s stepfather)). In short, people she didn’t really know and therefore needn’t be worried about not knowing now.
My mom isn’t in a AL faciility (yet), but we’ve noticed this pattern too. Visiting old family friends of ours – people I’ve known since I was a baby, people she’s known most of her adult life – agitates her to no end because she cannot remember who they are, although she recognizes them. This past Christmas was quite a trying time. We ended up leaving soon after dinner because she was just too agitated to stick around.
None of Mom’s friends ever call to see how she’s doing. One of them – she’s 83, same age was Mom – explained that it’s now too painful for her to associate with Mom because Mom doesn’t remember anything about her or their friendship. Ditto for another friend who’s now attending the same day center Mom attends (the friend is in early stage ALZ, which means she still has a lot intact).
I’ve explained to her friends that it’s OK if they feel uncomfortable. I’m not offended, I understand, and if something major happens, I’ll let them know.
I think this is a good point. Modern medicine is so detatched from how life is lived that most people simply do not know how to deal with death, let alone serious illness. We assume that doctors will take care of everything, so what is left for us to do?
After my dad suffered a stroke, my family was very fortunate in that lots of friends from church and work, as well as neighbors, made sure to express concern and love. There were flowers everywhere, food prepared, etc. That was lovely. I came home to be there for a week, and it was a strange week. I can see how, over long periods of time, dealing with an illness that affects the person’s mental capacity would be exhausting. My dad lost the ability to speak after the stroke (he did regain it for the most part before he died). He also didn’t give good indications that he understood what was being said, either, making it very difficult to communicate at all. We’d ask if he wanted something, and he’d nod. We’d then do whatever it was we’d offered, and he’d violently object. Things did get better over the month between that stroke and his death, but it took lots of work for everyone.
When it comes to illnesses that don’t change the person’s personality or communication abilities, I don’t know what to think. My guess is that, when faced with such impending tragedy, people kind of shut down and have no idea how to react appropriately. Like **carlotta[/s] said, it isn’t taught. Do you ignore it, and talk to the person as if everything is normal? Do you focus on it so as not to appear cavelier about it? Do you talk about your own life, which means taking for granted your own health and possibly making them jealous? Do you ask about theirs, and make them focus in their own problems?
Though it’s obviously not the best course of action, I can see how just feeling completely awkward would be enough for some people to cease contact. It feeds on itself – you don’t call or visit right away, and it seems more and more ludicrous to do so the more time passes.
I lost two very close teachers and my great-grandfather to cancer. Each cancer resulted in a lasting, wasting illness that they tried to fight.
I couldn’t bring myself to go visit them often because every time I did, they looked worse and worse. I’d burst into tears as soon as I left and more often than not have a hysterics fit that I’d have to get medicated to calm down.
I tried to send cards and pass along my hellos through other people, but physically seeing them was, after a while, out of the question.
Mostly, I wish I could remember them some other way. I wish I’d never had to see them in that state. I wish I could remember them when they were healthy and robust and still had the strength to hold a conversation. And I can’t anymore. My last memories of them are really, really sad and pathetic, and I wish I hadn’t seen it. I’m sure it meant a lot to them when I went in to see them, but now I’m left with a lasting memory of them just…fading away. And being in so much pain that they were doped up whenever I’d go see them.
So call me a horrible person because I can’t deal with other peoples’ illnesses very well - I’ll make sure they know I’m thinking of them, but I don’t want to see them dying. I’ll send cards, make donations to charity in their name, or call them up, but don’t make me go into the hospital and see them attached to machines that are keeping them alive. Don’t you dare.
This was exactly the reason why my cousin wouldn’t let Mom and I see my uncle as his ALZ progressed (he died of it last fall). As my cousin said, “I’d rather you remember him the way he was because back then he knew you and loved you.”
She had a point. She herself stopped visiting him a few months before he died for the same reason.
It doesn’t have to be awkward. I would enter her room and say, “Hey, how’s it going?” If she looked better, I’d tell her, or give her a compliment on the clothes she was wearing, and settle in for a chat.
You just talk about whatever the person wants to talk about. If they’re lonely, as my friend was, they’ll be eager to supply conversation topics. If they don’t feel like talking, watch TV with them, or offer to read a book or magazine aloud.
Sometimes, I’d just do a monologue about my day, which my friend seemed to enjoy. She seemed to want to hear about what was going on at school and how the people she had called friends were doing. (I’d lie to her on occasion and tell her that the boy she had a crush on had asked about her.) Sometimes, of course, she’d be in a bad mood and not want to talk about it, so instead, we’d talk about TV shows or make fun of her brother or even just sit there in silence for a while. I let her steer the conversation in whichever direction she chose and it seemed to work really well.
My friend didn’t want to talk about her illness. She wanted to talk about boys and music videos, so that’s what we talked about. Some of the elderly I used to deliver Meals-on-Wheels to wanted to talk about their afflictions, so that’s what we’d talk about. I’d just listen, make sympathetic comments and ask questions. (Pretty much the same as I’d do if the conversation was about any subject with which I was not overly-familiar.)
In other words, just go with the flow. Don’t go in with preconcieved notions of how it will go, and don’t feel like you have to treat them with kid gloves. They’ll let you know what topics make them comfortable.
I didn’t want to visit my friend. Honestly, towards the end of her life, it was an ordeal. She was a living skeleton, weak and helpless, and it sure wasn’t pleasant to have to see that, especially because I had become close with her over the course of the last year. It was really hard and sometimes, I wanted to take the easy way out and make excuses for it like, “Oh, she’s probably not feeling well enough to see me.”
But I felt like I owed it to her, and in a way, I owed it to myself. I didn’t think I could live with myself if I abandoned her out of squeamishness or cowardice. Visiting a sick friend is just the right thing to do and I’d never have a chance to make it up to her if I didn’t do the right thing while she was ill.
There, but for the Grace of God, go I. I would hope that if I were stricken, those I loved wouldn’t ignore me.
My aunt is declining. I manage to see her about once a month. I wish it were more, but visiting her is a full day affair. I work during the week, it’s a 2 hour drive (each way), and not all my weekends are free. Between being on call, weekend working, stuff I have to do myself, and so on, once a month is about it. Very sad.
Once you can’t socialize, they drop off expotentialy aproaching zero. It’s realy irratating when immediate famaily living under the same roof won’t see someone in the hospital that’s dying. That’s right, when they ask for you to come for over a couple months and you live in their house, you need to see them reguardless that you don’t like hospitals. That was the situation with a friend. I visited on lunch breaks so she saw somebody show up during her home stays, but most don’t show up after a long illness until the funeral.