A Thread for Those Caring for Aging Parents etc.

[Lorelei]

@Lorelei and @perry thank you for sharing your stories, this forum is the only place I can come to hear how other people dealt with this situation. My friends are in the midst of it still with their parents, as I am, and it seems we are only learning part of what we need to.

@tyty333 Yes, I hear many sad stories, families and siblings breaking apart even before the end, then more guilt and anger after the death, more lashing out and bitterness, more unhappiness spread around. My husband's family handled their mother's decline and death amazingly well, but he and his brothers were fortunate their sister took it all in hand, lived with and cared for their mother, told her brothers when to show up to stay for a few days while she was on travel/similar. My SIL set a good example, and I hope we are that kind of family too. The other kind is just too depressing.

Hi Maja,

I'm glad it helped and it's a journey, not always easy but you're there for Dad as much as you can be and believe me, not everyone will concern themselves.

I was one who had to shoulder everything alone, I'm not saying that out of looking for sympathy, it's what I had to do. My Mother was a very difficult woman, bitter and ungracious, ungrateful and downright nasty at times. It was the hardest thing I ever did but as time passed and she became more and more frail and unpleasant to deal with, I soon realised I had to put my own mask on before I could help her or anyone else. I did this by spending time with my animals and always making time to try to do the things I loved, even for short periods. I couldn't get out often as she needed so much care and I had to set aside many of the things I wanted to do. Also she was quick to blame when something wasn't quite right and very slow to show appreciation, but as I said before, being in that state of health brings out the worst

She had reasonable days and bad days and awful days and I did my best to be patient and understanding while drawing the line firmly when she displayed her worst behaviour. Everyone deserves basic respect and when she refused to show that to me, it was difficult. But we managed and even though she spent her last few weeks in hospital, I still did what I could to make sure she was treated properly.

It's a very hard road to travel and there are no rights or wrongs really when choosing whether to take on an elderly parent's care or not but Maja whatever happens, you have support and sympathetic ears here. xx

 

[Lorelei]

My mother’s memory is slipping badly. She forgets things as basic as who her grandchildren are and that it’s helpful for reasons of gait for your shoes to match.

There are drugs for this, but everyone I talk to says they’re both ineffective and have nasty side effects. Her doctor is discouraging it. Does anyone here have experience with this?

Hi Neil,

I've had some experience with this, I would say that if your Mom is like mine was, any drugs she took gave her every side effect going which made life even more difficult. So it can be a case of trying and monitoring, then reporting to the doctor ASAP if side effects are noted. It's a case of which is the lesser of the evils really, leave things as they are or try a drug and see what happens bearing in mind they might cause something else....

I would also keep an eye open for UTI's with your Mom, these are very common and can cause confusion and symptoms of memory loss etc, so these are definitely something to watch for. Make sure Mom is having enough to drink, sometimes if the memory is impaired, the elder won't drink enough or recognise their thirst cues, making sure hydration is good can prevent a lot of problems including UTI's.

 

[denverappraiser]

Thanks Lorelei. It's a difficult thing to deal with.

 

[Lorelei]

Thanks Lorelei. It's a difficult thing to deal with.

I know Neil, it's so hard and heartbreaking to watch, you'll do fine though. It's almost like the roles reverse, you become the parent and they become the child. Don't shoulder it alone though, make time for you and take whatever help and support is offered. You want to make sure there's enough of you to go around and that includes for you too!

 

[KaeKae]

@Lorelei
Thank you for sharing your experiences, it's a hard road to travel, and I can see that being the primary caregiver, is terribly stressful.
Right now, my aunt is back her own, nice personality, but when she was sick? It was terrible. We've learned the uti's too. If we see any indication of confusion, and haven't already received a call, we call her unit nurse. Then the meds seem to cause some confusion, too, but at least we know why and there should be an end in sight
Hang in there, friends, I'm so happy have found our support group here, between the fun posts about sparklies

 

[Lorelei]

@Lorelei
Thank you for sharing your experiences, it's a hard road to travel, and I can see that being the primary caregiver, is terribly stressful.
Right now, my aunt is back her own, nice personality, but when she was sick? It was terrible. We've learned the uti's too. If we see any indication of confusion, and haven't already received a call, we call her unit nurse. Then the meds seem to cause some confusion, too, but at least we know why and there should be an end in sight
Hang in there, friends, I'm so happy have found our support group here, between the fun posts about sparklies

I'm glad sharing helps Kae, it is such a hard journey but in the end, you know you did your best and you learn things about yourself too. Mostly good things I might add that you have far more courage, patience and compassion than you ever thought possible.

I had to give up so much to care for my Mother. I know I did the right thing despite her attitude towards me. I would have loved to have cared for my Father in his declining years but he was taken very suddenly. He had a smile like sunshine and he was always so brave and happy despite his illness, he was the antithesis to my Mother.

But with practical matters, the common UTI is a frequent cause of mental confusion and trouble in the elderly, so it always pays to keep them in mind if you notice sudden confusion, irritability or other mental changes.

This is a great thread and it's good to be able to support others through their journeys of caring for an elder. However, I don't blame anyone for choosing not to do it either.

 

[perry]

@Lorelei and @perry thank you for sharing your stories, this forum is the only place I can come to hear how other people dealt with this situation. My friends are in the midst of it still with their parents, as I am, and it seems we are only learning part of what we need to.

@tyty333 Yes, I hear many sad stories, families and siblings breaking apart even before the end, then more guilt and anger after the death, more lashing out and bitterness, more unhappiness spread around. My husband's family handled their mother's decline and death amazingly well, but he and his brothers were fortunate their sister took it all in hand, lived with and cared for their mother, told her brothers when to show up to stay for a few days while she was on travel/similar. My SIL set a good example, and I hope we are that kind of family too. The other kind is just too depressing.

You are welcome Maja. Caring for parents has certain issues that does not normally exist when caring for a child, spouse, sibling, or friend. It speaks well of those that do it... and we all learn as we go.

I wish you the best,

Perry

 

[perry]

Thanks Lorelei. It's a difficult thing to deal with.

Hang in their Neil. Yes, it's a struggle... and if you approach it with the care and caution of how you grade jewelry you will become a better and more polished person. I well remember how you were one of those that welcomed me on PS long long long ago... even though I rarely post much now.

It speaks very well of you that you have taken on this burden and are working on learning things about life that many never attempt.

I wish you the best,

Perry

 

[KaeKae]

@Lorelei I'm so sorry you had to shoulder it alone. I am very grateful I have my brother, husband and sister in law to share the burden. Of course, it mostly comes down to B and me, but DH and SIL (esp SIL, as she and B live so close) make a huge difference with support.

The UTI issue is mindboggling, isn't it? Then, the antibiotic they take may cause issues, as well. We also found this winter that when she was still on oxygen, but would take it off, we'd be getting crazy phone calls, wild stories. The unit nurse told us to call her, if we got any of that happening.

@denverappraiser The memory issues are SO difficult to handle, aren't they? I think more so than the physical. My husband's father is also in decline, and in his case, it's all a mental decline for now. This wonderful, intelligent, highly educated man is still wonderful, but so different from the man he was just five years ago. Well, the decline had begun, but wasn't yet diagnosed. Yesterday, we went down to visit and help MIL install a chandelier in their new condo. FIL was happy to see us and help DH with the project, but really he was just standing and holding things. When we first arrived, I said, "I need to find the powder room." FIL took three steps to that door, looked in and said, "Oh, yeah, it's....I'm not sure where that is." We could see the toilet from where we were. Later, DH went out to our car, and forgot their dog is a runner, so he left both the door and front gate open. Of course, Charlie took off, with DH and MIL right behind. I followed FIL, in the other direction. MIL was very happy, since then we both returned quickly. No telling where he might have wound up. I know the decline is inevitable, I just hope his easy going personality continues.

 

[Maja]

I've vented and ranted plenty on this thread so here is some good news: my dad turned 85 on Friday, and we had his birthday party at a nearby restaurant with about 20 people. He had a great time, and was smiling and happy and charming the whole time, remembered names, listened to stories, told a few himself.
If you had told me on April 2, when he was in the emergency room with pneumonia, and was still bruised with a fractured nose and eye socket from his fall the previous week, that he would eat a dozen oysters and drink a pint of Guinness to start his birthday meal, I would not have believed you. He went on to rockfish over pasta, and ate it all, and pasta is not the easiest thing to handle. We had asked his good friends (from the Navy, met in 1959), and they were able to attend. We got him a passion fruit mango pistachio birthday cake and sang to him.
The smartest thing I did was I put my foot down that the whole outing could only last three hours, including in the car, and the doctor was equally firm, so we got him home and into bed and then we all carried on the party without him. The payoff is today he is calm and aware and doesn't look frail, unlike the last few parties where he stays up too long, gets dehydrated, hungry, and then falls the next day.
I treasure these moments when he is balanced because they are so much better than the hours and days spent in the hospital watching him struggle to figure out where he is and what is happening.

That's all.

 

[KaeKae]

Maja, thank you so much for sharing your story!
I am SO happy that your dad is doing so well and his birthday celebration was such a success!

 

[Lorelei]

I've vented and ranted plenty on this thread so here is some good news: my dad turned 85 on Friday, and we had his birthday party at a nearby restaurant with about 20 people. He had a great time, and was smiling and happy and charming the whole time, remembered names, listened to stories, told a few himself.
If you had told me on April 2, when he was in the emergency room with pneumonia, and was still bruised with a fractured nose and eye socket from his fall the previous week, that he would eat a dozen oysters and drink a pint of Guinness to start his birthday meal, I would not have believed you. He went on to rockfish over pasta, and ate it all, and pasta is not the easiest thing to handle. We had asked his good friends (from the Navy, met in 1959), and they were able to attend. We got him a passion fruit mango pistachio birthday cake and sang to him.
The smartest thing I did was I put my foot down that the whole outing could only last three hours, including in the car, and the doctor was equally firm, so we got him home and into bed and then we all carried on the party without him. The payoff is today he is calm and aware and doesn't look frail, unlike the last few parties where he stays up too long, gets dehydrated, hungry, and then falls the next day.
I treasure these moments when he is balanced because they are so much better than the hours and days spent in the hospital watching him struggle to figure out where he is and what is happening.

That's all.

Great memories you'll always treasure!

 

[KaeKae]

Hi everyone. Just thought I'd share. It's terribly sad news that my aunt had over the weekend. The woman in the story was Aunt J's dear friend since high school. That's 70 years of friendship. We all are still in shock and just feel awful for her, her husband and family.

http://newyork.cbslocal.com/2018/05/01/mutli-vehicle-crash-in-bk/

 

[junebug17]

Hi everyone. Just thought I'd share. It's terribly sad news that my aunt had over the weekend. The woman in the story was Aunt J's dear friend since high school. That's 70 years of friendship. We all are still in shock and just feel awful for her, her husband and family.

http://newyork.cbslocal.com/2018/05/01/mutli-vehicle-crash-in-bk/

Oh no, that is just so sad and shocking KaeKae, my thoughts are with everyone affected by this tragedy.

 

[KaeKae]

Even more sadness. The husband passed away during the week, they had the funeral yesterday. My aunt didn't want to go. I think it was just to much for her. SO sad.

 

[Lorelei]

Even more sadness. The husband passed away during the week, they had the funeral yesterday. My aunt didn't want to go. I think it was just to much for her. SO sad.

I'm so sorry, such awful news but they are together, just so difficult for those left behind.

 

[KaeKae]

I'm so sorry, such awful news but they are together, just so difficult for those left behind.

Yes, if not yet, then maybe one day, their daughters will find comfort that they basically passed together.

 

[missy]

@KaeKae I'm so sorry. My thoughts are with the loved ones.

 

[perry]

As I review all the recent post I truly appreciate all who post here - and especially Lorelei and Missy who remember me from long ago. There are so many conflicting thoughts of hope, struggle, frustration, pain, and joy that comes to mind as I read the post and they remind me of my caring for my mom.

Together, we all make each other stronger... even if we are often at a loss of words...

I wish all dealing with this - or recovering from dealing with this issue - the very best. I'd hug you all in person if I had a chance... and perhaps that would in part be because I too could use a hug too from someone who understands...

Perry

 

[Lorelei]

As I review all the recent post I truly appreciate all who post here - and especially Lorelei and Missy who remember me from long ago. There are so many conflicting thoughts of hope, struggle, frustration, pain, and joy that comes to mind as I read the post and they remind me of my caring for my mom.

Together, we all make each other stronger... even if we are often at a loss of words...

I wish all dealing with this - or recovering from dealing with this issue - the very best. I'd hug you all in person if I had a chance... and perhaps that would in part be because I too could use a hug too from someone who understands...

Perry

Sending you a huge hug Perry! You're not alone remember, there are many of us who do understand how it is and when it gets tough, just post here. I found talking to someone who understood really helped when I was going through it because people who have never been there just don't always get it.

 

[KaeKae]

Perry,
Sending you cyber hugs, and wishing I could give you one in person, too.

On Thursday, we have Aunt J three month Family Meeting at the home. Should be interesting.

 

[missy]

As I review all the recent post I truly appreciate all who post here - and especially Lorelei and Missy who remember me from long ago. There are so many conflicting thoughts of hope, struggle, frustration, pain, and joy that comes to mind as I read the post and they remind me of my caring for my mom.

Together, we all make each other stronger... even if we are often at a loss of words...

I wish all dealing with this - or recovering from dealing with this issue - the very best. I'd hug you all in person if I had a chance... and perhaps that would in part be because I too could use a hug too from someone who understands...

Perry

Gentle (((hugs))) @perry.

I agree completely. In support we find comfort even when there are no words to truly express how we are feeling. Life is hard and full of challenges but the support and caring of others makes it manageable. We are not alone. (((Hugs))).

 

[NewEnglandLady]

Hugs to you, Perry. And to all of you who are caring for your parents.

My parents were on the younger side when they passed. My father drowned while on a fishing trip in 2016 (he was 63). My mother died last month after a relatively short battle with ALS (she was 64). I have 3 sisters and we all rotated staying with her for months until she passed.

Caring for my mother was definitely one of the most emotionally draining things I've ever been through. And it's not because she needed absolutely EVERYTHING done for her (bathing, using the bathroom, brushing her teeth, eating, etc.) because I have young kids and I can absolutely handle doing all of those things. It was hard because she was mortified that we had to do those things for her. I wanted so badly to take away her shame, but I couldn't.

Ultimately my mother opted to stop eating and drinking because she no longer wanted to live as a prisoner of her broken body. She was in hospice care, so we prepared as much as we could and she passed within a few days of her last sip of water. Supporting her through that was also one of the hardest things I've been through. But she was amazingly strong and laughed with us right up to the very end. And ultimately she died just as she wanted--in her own home surrounded by all of her children in the very spot she'd married my father 38 years before.

There were times when caring for her that I didn't think I could keep going. My life is on the East Coast--I have a husband and young kids. I was flying back to the midwest every week for months. I missed my kids, my job was put on hold, my husband was on his own taking care of everything. My sisters started to bicker about who was pulling more weight (and we NEVER argue!), so it did get dark at times. Yet now that she has passed, we are all so grateful for the time we spent with her when she was sick. My mom had never been so vulnerable or so helpless and it brought out a side of her that we had never seen. She was so loving and thankful. And she had such a sense of humor about it--we laughed every single day. And I cherish those memories of her at the end. I'm so inspired by her--her bravery, her strength, and her grace. When I start to get sad, I think about how grateful I am to have had such a wonderful mother. It's definitely made me think about how I want my own daughters to remember me.

 

[canuk-gal]

HI:

NEL--your story resonates. I am sorry for your losses.

My DH looked after his mother--and while it almost leveled us--my husband said the same thing: he was glad to have the time with her and that the hard work was worth the effort. Much sadness but also much satisfaction knowing one could be there when needed.

Great work folks!!

kind regards--Sharon

 

[KaeKae]

NEL,
Thank you for sharing your and your mom's story. My heart goes out to you. I am so glad you have the memories. Your mom sounds like a very special woman, indeed.
Kae

 

[missy]

@NewEnglandLady I am so sorry for your loss and for all the heartache. Glad you and your sisters pulled together and made it work for caring for your mom and that it brought you even closer together ultimately. Sending you gentle (((hugs))) and best wishes.

 

[junebug17]

@NewEnglandLady, my deepest condolences on the very recent loss of your mother, and also for the recent loss of your father. Very sad to lose both parents so close together and under such tragic circumstances, and you are so young You have had a very traumatic couple of years, please take care of yourself. You were there for her in all ways and I'm sure being cared for by her loving daughters brought her so much comfort and peace. I am glad that the memories of being with your mother are bringing you comfort and helping you work through your grief. Yes, she was an amazing mother but you are also an amazing daughter, and a wonderful example to your own daughters. Big hugs to you, I'm so sorry for all you've been through.

 

[NewEnglandLady]

You are all too sweet. Thank you for the condolences. And I'm thinking of you all as you care for your aging parents. It's one of those situations you think about as your parents age, but until you are in it, it's hard to completely understand the type of toll it can take.

Having lost one parent very suddenly and tragically, then losing the other one over a longer span of time (with needs that required full-time care), I can say that there is no "better" way. I am thankful that with my mother I was able to give her a proper goodbye. And since she was the remaining parent, I appreciate that we had time to get everything in order.

 

[Lorelei]

Hugs to you, Perry. And to all of you who are caring for your parents.

My parents were on the younger side when they passed. My father drowned while on a fishing trip in 2016 (he was 63). My mother died last month after a relatively short battle with ALS (she was 64). I have 3 sisters and we all rotated staying with her for months until she passed.

Caring for my mother was definitely one of the most emotionally draining things I've ever been through. And it's not because she needed absolutely EVERYTHING done for her (bathing, using the bathroom, brushing her teeth, eating, etc.) because I have young kids and I can absolutely handle doing all of those things. It was hard because she was mortified that we had to do those things for her. I wanted so badly to take away her shame, but I couldn't.

Ultimately my mother opted to stop eating and drinking because she no longer wanted to live as a prisoner of her broken body. She was in hospice care, so we prepared as much as we could and she passed within a few days of her last sip of water. Supporting her through that was also one of the hardest things I've been through. But she was amazingly strong and laughed with us right up to the very end. And ultimately she died just as she wanted--in her own home surrounded by all of her children in the very spot she'd married my father 38 years before.

There were times when caring for her that I didn't think I could keep going. My life is on the East Coast--I have a husband and young kids. I was flying back to the midwest every week for months. I missed my kids, my job was put on hold, my husband was on his own taking care of everything. My sisters started to bicker about who was pulling more weight (and we NEVER argue!), so it did get dark at times. Yet now that she has passed, we are all so grateful for the time we spent with her when she was sick. My mom had never been so vulnerable or so helpless and it brought out a side of her that we had never seen. She was so loving and thankful. And she had such a sense of humor about it--we laughed every single day. And I cherish those memories of her at the end. I'm so inspired by her--her bravery, her strength, and her grace. When I start to get sad, I think about how grateful I am to have had such a wonderful mother. It's definitely made me think about how I want my own daughters to remember me.

Sending you hugs, I'm so sorry for your loss. Take some time for you now. xxxx

 

[KaeKae]

Hey there everyone. Yesterday my brother and I attended our aunt's quarterly family meeting at the nursing home. It went well.

She actually went ahead and voiced her complaints about the evening staff. And how long it often takes for her assigned aide to get her ready for bed. The unit nurse explained that while she and other more mobile residents are in the dining room, the aides are on the floor in the common area hand feeding those who cannot do that themselves. And often there are a lot of interruptions. So while the other residents are coming back from dinner, others are still eating, and nothing goes as quickly as the residents think it ought to. J seems to feel that her aide should be ready to help her as soon as when she wants to go to bed.

I asked what the number of residents to Aide was and it sounds like it's about 15 to 1. the nurse claims that is pretty much standard for the industry. My aunt and her roommate both think that they should have their own Aide day and night. Can you imagine what that would cost? They don't understand that their social security, Medicare, or Medicaid will not cover that.

They did also suggest that she designate a separate power of attorney for medical matters. Right now my brother has Financial power of attorney, and by default kind of has the other,. They suggested that really there should be two separate people for this. Of course we didn't discuss it after because she was tired and so were we. And I know we started to discuss this right before she got so sick and then had to shelve it. We nearly needed that then though.

On a different note, for a while now our aunt has been telling us that in her apartment, which we cleaned out three years ago, there was a a necklace/ pendant in the shape of an umbrella. She wanted me to have it. Well neither I nor my brother and my sister-in-law all remember this necklace and told her so and told her that we didn't remember finding it. Yesterday after the meeting I went back to the house with my brother and he and I and my sister-in-law went through some boxes. There were boxes that they had thrown together right after she got sick and they took what they felt was most valuable to get it out of the apartment that was now unoccupied. Sister-in-law just took all of what she thought was costume jewelry, and some pearls and it was in one of those boxes. Guess what we found... the umbrella pendant! Honestly I have never seen this piece. And I think I told you that before she fell and had to go into the nursing home she sold most of her jewelry. Why she kept this piece that we had never seen her wear we don't know but here's a couple pictures of it.