Help me help my father
August 13, 2014 10:39 AM Subscribe
My father has suffered an extended series of illnesses and has a terminal disease. He's weak but has shown a capability to physically recover. Left to his own devices he sleeps a lot. How do I keep him engaged?
My father has suffered a series of post-surgical complications (including MRSA, blood clots, bleeds) over the last 6 months which have left him physically weak and, by his own reports, exhausted. His condition has gone up and down several times, and of late he's been falling asleep a lot. His physical abilities are improving: a blood clot in his leg has caused some pain but he is quite mobile and is walking laps regularly as part of his exercise regimen.
Now the big buried lede: that surgery was for the removal of a glioblastoma. He's aware this is terminal, and that length of recovery from this particular ticking time bomb is all over the board: it was a very good removal, but they don't go away. The particularly relevant aspects of this from a short-term care perspective are: (1) he finished a course of radiation about a month ago, (2) he has a course of chemotherapy for a week out of every month, and (3) he is, understandably, depressed and discouraged.
The physical exhaustion, the lack of mental focus (possibly a radiation effect), and I imagine the depression have contributed to an inactivity which concerns me (and which drives my mother crazy). Left to his own devices, he will fall asleep in front of the TV.
So what I'm trying to do is come up with ways to keep him engaged. He's capable of maintaining mental activity: during meals he's alert and conversational, and my mother has compelled him to play boardgames (Settlers of Catan, Coloretto, Slide 5, Transamerica, and Ticket to Ride he's mostly on top of, with only occasional vagueness; Dominion honestly seems to tax him with all the text and interactions). But ideally we can find things to keep him busy which don't keep us by his side: my mother works, and I don't actually live here, and I'd like to help him entertain himself.
Basically, I'd like to know if anybody has good ideas for how to engage him, or what I might have missed in trying to think about how to keep him mentally active. My observations about specific ways to engage him below:
* TV and audiobooks seem too passive; anything which doesn't care if he's awake won't work.
* He is physically capable of reading but says he lacks the concentration: he can read single sentences and when he goes on to the next then the one he just read flies out of his head.
* I've suggested casual puzzle games of some sort --- I'm a bit ignorant of what would work well for his current mental focus level --- and he's been passively resistant. I'm not sure whether the passive resistance is an active distaste for the concept or just a depressive avoidance of activity.
Anyone know what I can do, or point him towards, or if there's a wonderful activity idea I'm missing? I don't need anything mentally or physically challenging, just something enjoyable and non-passive.
My father has suffered a series of post-surgical complications (including MRSA, blood clots, bleeds) over the last 6 months which have left him physically weak and, by his own reports, exhausted. His condition has gone up and down several times, and of late he's been falling asleep a lot. His physical abilities are improving: a blood clot in his leg has caused some pain but he is quite mobile and is walking laps regularly as part of his exercise regimen.
Now the big buried lede: that surgery was for the removal of a glioblastoma. He's aware this is terminal, and that length of recovery from this particular ticking time bomb is all over the board: it was a very good removal, but they don't go away. The particularly relevant aspects of this from a short-term care perspective are: (1) he finished a course of radiation about a month ago, (2) he has a course of chemotherapy for a week out of every month, and (3) he is, understandably, depressed and discouraged.
The physical exhaustion, the lack of mental focus (possibly a radiation effect), and I imagine the depression have contributed to an inactivity which concerns me (and which drives my mother crazy). Left to his own devices, he will fall asleep in front of the TV.
So what I'm trying to do is come up with ways to keep him engaged. He's capable of maintaining mental activity: during meals he's alert and conversational, and my mother has compelled him to play boardgames (Settlers of Catan, Coloretto, Slide 5, Transamerica, and Ticket to Ride he's mostly on top of, with only occasional vagueness; Dominion honestly seems to tax him with all the text and interactions). But ideally we can find things to keep him busy which don't keep us by his side: my mother works, and I don't actually live here, and I'd like to help him entertain himself.
Basically, I'd like to know if anybody has good ideas for how to engage him, or what I might have missed in trying to think about how to keep him mentally active. My observations about specific ways to engage him below:
* TV and audiobooks seem too passive; anything which doesn't care if he's awake won't work.
* He is physically capable of reading but says he lacks the concentration: he can read single sentences and when he goes on to the next then the one he just read flies out of his head.
* I've suggested casual puzzle games of some sort --- I'm a bit ignorant of what would work well for his current mental focus level --- and he's been passively resistant. I'm not sure whether the passive resistance is an active distaste for the concept or just a depressive avoidance of activity.
Anyone know what I can do, or point him towards, or if there's a wonderful activity idea I'm missing? I don't need anything mentally or physically challenging, just something enjoyable and non-passive.
His condition has gone up and down several times, and of late he's been falling asleep a lot. His physical abilities are improving: a blood clot in his leg has caused some pain but he is quite mobile and is walking laps regularly as part of his exercise regimen.
If he is getting physically better, then the sleep is probably part of his healing process.
Glioblastoma is a brain tumor. The rest of the body's lymphatic system speeds up from walking. In other words, toxins get dumped faster from most tissues if you walk more -- so good thing he is walking. BUT the brain dumps lymph while you sleep. Sleep is critical to the brain's ability to heal. Sleep boosts brain's self-cleaning system
So, if he is walking and eating well and doing things that engage him mentally, I would let him sleep as much as he wants/needs to. I would not try to stop that. It is how his body is trying to heal and repair his brain.
posted by Michele in California at 10:49 AM on August 13, 2014 [11 favorites]
If he is getting physically better, then the sleep is probably part of his healing process.
Glioblastoma is a brain tumor. The rest of the body's lymphatic system speeds up from walking. In other words, toxins get dumped faster from most tissues if you walk more -- so good thing he is walking. BUT the brain dumps lymph while you sleep. Sleep is critical to the brain's ability to heal. Sleep boosts brain's self-cleaning system
So, if he is walking and eating well and doing things that engage him mentally, I would let him sleep as much as he wants/needs to. I would not try to stop that. It is how his body is trying to heal and repair his brain.
posted by Michele in California at 10:49 AM on August 13, 2014 [11 favorites]
From a hospice nurse perspective, I'd say let him sleep. All that treatment is exhausting, the cancer is exhausting, dying is hard work. Do you have a palliative care program near him? They are not hospice but can help guide your family through the processes of post treatment and pre-hospice need. I say let him guide you too, whatever makes him happy is what you should aim for and not saying you are doing this but I've seen famalies do it unintentionally, but don't make him feel bad for being tired or wanting to sleep. I'm sorry.
posted by yodelingisfun at 11:07 AM on August 13, 2014 [19 favorites]
posted by yodelingisfun at 11:07 AM on August 13, 2014 [19 favorites]
Just another voice saying that sleep is one of the ways the body helps itself to heal and recover. I'm not sure why a sick and weak man shouldn't be allowed to sleep if that's what his body wants to do. He's walking laps and is mentally engaged when he's awake - what more can you ask for? He's been through a tremendous amount and older bodies take longer to return to health.
I'd be far more concerned with your mother who is "being driven crazy" by your Dad's need to rest. I hope that you're both doing whatever you can to shield him from that reaction.
posted by quince at 11:21 AM on August 13, 2014 [8 favorites]
I'd be far more concerned with your mother who is "being driven crazy" by your Dad's need to rest. I hope that you're both doing whatever you can to shield him from that reaction.
posted by quince at 11:21 AM on August 13, 2014 [8 favorites]
I am sorry. My parent has been going through this for over two years now. It is hell for everyone involved and no one who has not experienced it directly will ever know what it's like. MeMail me if you would like to talk.
First and foremost, he might need his steroid dose adjusted if he's started sleeping a lot. Talk to the doctor about this, if you haven't already. Sleepiness is a sign of intracranial pressure.
Other than that, I agree to a limited extent with those who say to let him sleep. It's easy to find aspects of this disease to blame, it's almost like saying 'if you do this you'll become better'. This is to be avoided: you and your mother should be very clear whether your objection is for the sake of his health, or for your own mental wellbeing. But if the sleepiness is not because of pressure, and not an expression of your rage against the disease, but a giving up, then yes, I think you should think of ways to keep him mentally engaged with life.
My experience has been that what works one month will not the next month. And sadly the trajectory is downwards, particularly if there is radiation damage. In my parent's case, the radiation damage was worse than the effects of the tumor and craniotomy itself and only manifested a year after the actual treatment.
I think every patient is different here, but this is what my parent found engaging at various times:
- jigsaw puzzles, especially on the iPad
- scrabble
- simple emails to those who will reliably respond - if he is unable to write himself, ask him to dictate
- listening to music, particularly songs we knew were associated with their youth (look at websites on music and dementia. Generally dementia sites have been helpful if one speeds up the time scale)
- embroidery and other crafts which produced something which they could give to those they love (and, I suspect, feel less useless)
- regular walks in a park
- overseas travel
The single biggest thing was company, I'm afraid. Being left alone brought decline. Having human interaction, conversation, has been what kept my parent going. This may be down to personality, but I think there is benefit here for others as well. If it's possible for friends or family to set up a visiting schedule when your mother isn't around, try to do that.
We tried using some brain training apps, but my parent was not able to take advantage of them at the stage we obtained them. Your father sounds like he might be able to. For my parent the incentive was the realization that there was a cognitive and memory decline, and a need to fight against it. I don't know if this would be a motivation for your father.
If he is not on medication for depression, he should be. If you're dealing with both a neurosurgeon and an oncologist, we have found (and others agreed) that the oncologist was always more interested in quality of life. We also identified a physician who started out as my parent's GP and who monitored mood carefully. He is now, as we always planned, in charge of palliative care.
I am so sorry.
posted by sockofdreams at 11:34 AM on August 13, 2014 [1 favorite]
First and foremost, he might need his steroid dose adjusted if he's started sleeping a lot. Talk to the doctor about this, if you haven't already. Sleepiness is a sign of intracranial pressure.
Other than that, I agree to a limited extent with those who say to let him sleep. It's easy to find aspects of this disease to blame, it's almost like saying 'if you do this you'll become better'. This is to be avoided: you and your mother should be very clear whether your objection is for the sake of his health, or for your own mental wellbeing. But if the sleepiness is not because of pressure, and not an expression of your rage against the disease, but a giving up, then yes, I think you should think of ways to keep him mentally engaged with life.
My experience has been that what works one month will not the next month. And sadly the trajectory is downwards, particularly if there is radiation damage. In my parent's case, the radiation damage was worse than the effects of the tumor and craniotomy itself and only manifested a year after the actual treatment.
I think every patient is different here, but this is what my parent found engaging at various times:
- jigsaw puzzles, especially on the iPad
- scrabble
- simple emails to those who will reliably respond - if he is unable to write himself, ask him to dictate
- listening to music, particularly songs we knew were associated with their youth (look at websites on music and dementia. Generally dementia sites have been helpful if one speeds up the time scale)
- embroidery and other crafts which produced something which they could give to those they love (and, I suspect, feel less useless)
- regular walks in a park
- overseas travel
The single biggest thing was company, I'm afraid. Being left alone brought decline. Having human interaction, conversation, has been what kept my parent going. This may be down to personality, but I think there is benefit here for others as well. If it's possible for friends or family to set up a visiting schedule when your mother isn't around, try to do that.
We tried using some brain training apps, but my parent was not able to take advantage of them at the stage we obtained them. Your father sounds like he might be able to. For my parent the incentive was the realization that there was a cognitive and memory decline, and a need to fight against it. I don't know if this would be a motivation for your father.
If he is not on medication for depression, he should be. If you're dealing with both a neurosurgeon and an oncologist, we have found (and others agreed) that the oncologist was always more interested in quality of life. We also identified a physician who started out as my parent's GP and who monitored mood carefully. He is now, as we always planned, in charge of palliative care.
I am so sorry.
posted by sockofdreams at 11:34 AM on August 13, 2014 [1 favorite]
I would tend to let him rest, and to try to use times when he is alert to engage with him in meaningful ways (boardgames with family members count!).
If there are individual actitives he enjoys, then great, but pushing him toward busywork, more or less, is quite likely to increase his depression. Depending on how old he is, suddenly being too sick to do useful work can be a huge ego blow to formerly productive adults, especially men, who often measure their self-worth by their professional status or earning capacity. He needs time and energy to adjust, and he needs time and energy to grieve all of the things he's lost in his life, and time and energy to figure out how he wants to live going forward.
Maybe you can shift the focus to finding ways for him to make a meaningful connection with others, or a conduct a meaningful review of his life in some way. My father spent a lot of time putting together a "family narrative" (a geneology in writing) when he first retired. Maybe organizing family photos, or tape-recording his life story, or tape-recording memories of you (and any siblings) as kids. Think about memories or knowledge you'll lose when he's gone, and talk to him about how to preserve it in some way.
If he balks, though, don't push it. (And maybe help your mother find support or other outlets to deal with her frustration and grief.)
posted by jaguar at 11:34 AM on August 13, 2014 [1 favorite]
If there are individual actitives he enjoys, then great, but pushing him toward busywork, more or less, is quite likely to increase his depression. Depending on how old he is, suddenly being too sick to do useful work can be a huge ego blow to formerly productive adults, especially men, who often measure their self-worth by their professional status or earning capacity. He needs time and energy to adjust, and he needs time and energy to grieve all of the things he's lost in his life, and time and energy to figure out how he wants to live going forward.
Maybe you can shift the focus to finding ways for him to make a meaningful connection with others, or a conduct a meaningful review of his life in some way. My father spent a lot of time putting together a "family narrative" (a geneology in writing) when he first retired. Maybe organizing family photos, or tape-recording his life story, or tape-recording memories of you (and any siblings) as kids. Think about memories or knowledge you'll lose when he's gone, and talk to him about how to preserve it in some way.
If he balks, though, don't push it. (And maybe help your mother find support or other outlets to deal with her frustration and grief.)
posted by jaguar at 11:34 AM on August 13, 2014 [1 favorite]
First of all, I want to express my deep sympathy for what you're going through. My father was diagnosed with stomach cancer at a young age and it was heartbreaking because he was such a wonderful man. I'm so sorry you're suffering such pain. He truly gave everything for his family and never complained.
When he was diagnosed, the doctors gave him two months. it sucked. Hard. The only thing that seemed to cheer him up most was being around his granddaughter. She was such a light in his life. if you could possibly have a child cheer him up, I think that would be the greatest thing.
posted by LuckySeven~ at 1:57 PM on August 13, 2014
When he was diagnosed, the doctors gave him two months. it sucked. Hard. The only thing that seemed to cheer him up most was being around his granddaughter. She was such a light in his life. if you could possibly have a child cheer him up, I think that would be the greatest thing.
posted by LuckySeven~ at 1:57 PM on August 13, 2014
Craft projects of some variety? Knitting has traditionally been seen as a pretty gendered activity but more men are taking it up, there are certainly projects like hats and scarves that are both reasonably easy and clearly can be made for men. Or drawing or leatherwork or assembling models or any number of such things according to his interests and capabilities.
posted by Sequence at 2:12 PM on August 13, 2014
posted by Sequence at 2:12 PM on August 13, 2014
This is hard, and I understand that you want your old Dad back. Everyone should probably step back and think about what he's been through. It's been a lot. Brain surgery, cancer treatments and frankly, it's unrealistic to expect that he's going to bounce back.
Embrace the small moments. Spend time with him doing little things that will be sweet memories in the future. Pull out the old photo albums, scan the photos onto a webpage, have him tell you about the people and places in the photos. Write down his memories.
Sit with him and watch his favorite movies with him. Play the board games. There's Risk Legacy, which is meant to retain information from game to game.
Your Mom might want to get into a support group for caregivers of people with terminal diagnoses. I don't think she's coping well if she's being driven crazy by your father's inactivity.
Talk with your Dad about what he wants. He may have ideas about his death and he might not want to distress you or your Mom with the details. Give him a place where he can be comfortable discussing his hopes, fears and desires.
Hang in there. It means everything that you're there for them.
posted by Ruthless Bunny at 4:32 PM on August 13, 2014 [2 favorites]
Embrace the small moments. Spend time with him doing little things that will be sweet memories in the future. Pull out the old photo albums, scan the photos onto a webpage, have him tell you about the people and places in the photos. Write down his memories.
Sit with him and watch his favorite movies with him. Play the board games. There's Risk Legacy, which is meant to retain information from game to game.
Your Mom might want to get into a support group for caregivers of people with terminal diagnoses. I don't think she's coping well if she's being driven crazy by your father's inactivity.
Talk with your Dad about what he wants. He may have ideas about his death and he might not want to distress you or your Mom with the details. Give him a place where he can be comfortable discussing his hopes, fears and desires.
Hang in there. It means everything that you're there for them.
posted by Ruthless Bunny at 4:32 PM on August 13, 2014 [2 favorites]
It's late here so this is quick and possibly not so coherent, but I have some experience of this - my mother had glioblastoma...well, it started out as Grade 3 but ended up like that. I just wanted to say - the tiredness..it is totally normal. The lack of concentration etc - they just cannot concentrate, string thoughts together, follow conversations - it can be just too hard. My mother went from one of the most intelligent, quick and clever people I know to a shadow of herself, tired, falling asleep - especially just after the radiotherapy. She also had damage from the surgery - finding words for objects, recognising them..aphasia. It took her so long to do something like finding the dishes for breakfast and eating her cereal. This is a terrible disease and the brain just gets so tired. I don't mean to be a downer but I really wouldn't be trying puzzles or anything like that...conserving energy for chatting is about all I'd do. If it was something like a brain injury whereby recovery was dependent on exercise and cognitive repair, I'd be all for it. But this is different...I just watched my mother go through this in the last year and any further thinking than was necessary was just SO hard on her. I still can't believe she went through it.
I agree with Ruthless Bunny above saying do small things together. Photo albums and memories don't always happen though - I wished they did but some people don't want to deal with the end of their life coming near and just won't engage in things like that. I hope for your sake you can do some of these things. I also agree with what she said about your mother accepting the reality of the situation...your father really is going to be inactive...it's probably all he can do at this point. This is a devastating disease. I'm so sorry he had to go through all of those complications on top of the surgery. If you have any questions send me an email.
posted by cornflakegirl at 5:41 PM on August 13, 2014 [2 favorites]
I agree with Ruthless Bunny above saying do small things together. Photo albums and memories don't always happen though - I wished they did but some people don't want to deal with the end of their life coming near and just won't engage in things like that. I hope for your sake you can do some of these things. I also agree with what she said about your mother accepting the reality of the situation...your father really is going to be inactive...it's probably all he can do at this point. This is a devastating disease. I'm so sorry he had to go through all of those complications on top of the surgery. If you have any questions send me an email.
posted by cornflakegirl at 5:41 PM on August 13, 2014 [2 favorites]
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posted by xingcat at 10:46 AM on August 13, 2014