Hi Everyone,
My 61-year old father was diagnosed with multiple myeloma in May 2016 with lots of bone involvement. He has had 8 rounds of radiation. He completed 1 cycle of Revlimid, Velcade, dexamethasone (RVD), which he responded well to (50% reduction in cancer cells; my apologies if this isn't the right "terminology"). But then he fell and injured himself quite badly.
My dad has been hospitalized / in rehab / hospitalized / in rehab since July 16th. He had major surgery to repair a collapsed vertebrae on July 27. He's been in an inpatient physical rehab center for about a week, where he was diagnosed with pneumonia. His pneumonia isn't bad enough to hospitalize him, yet. So that's good.
I was wondering if anyone had tips of how to keep him occupied and in good spirits during his long hospital / rehab stay? He's starting to get discouraged and depressed. The pneumonia has really set him back. He has very limited range of mobility (cannot walk unassisted, is in neck brace). He isn't very keen to technology, either.
Thanks for all your help. My brain is over-taxed and I am having trouble coming up with ideas. I'm going down to visit him for 2 days tomorrow and would love to bring some things to cheer him up.
Thank you,
Whitney
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9 posts
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Re: Helping someone cope with a long-term hospital stay
Whitney,
I don't know if this will help, but having been through a similar experience as your dad, I can offer these points.
First, I was being treated in a myeloma clinic so there were others experiencing much of the same things as I was experiencing. It not only helped me, but it helped my family and caregivers. It can be a frightening experience. Something was gained by relating to others.
Second, I had three collapsed vertebrae, which all recovered great following kyphoplasty. Let's hope his surgery is successful too.
Third, I too was discouraged and depressed during a 5-week hospitalization. A psychiatrist was called in for a consult and asked a series of questions. I don't know the official outcome of the meeting, but they didn't do anything different from then on. My impression was he felt I had a realistic outlook on what was happening. Unbeknownst to me, he might have been evaluating any suicidal thoughts. I didn't feel suicidal, but what was going to happen would happen whether I like it or not.
Fourth, I had a great support system and fantastic nurse. We called each other sunshine, although I was anything but cheerful. She must of drawn the short straw and I was forever grateful.
Lastly, it has taken time, but I never expected to be where I am today. The human mind is remarkable what it can adapt to.
Good Luck
I don't know if this will help, but having been through a similar experience as your dad, I can offer these points.
First, I was being treated in a myeloma clinic so there were others experiencing much of the same things as I was experiencing. It not only helped me, but it helped my family and caregivers. It can be a frightening experience. Something was gained by relating to others.
Second, I had three collapsed vertebrae, which all recovered great following kyphoplasty. Let's hope his surgery is successful too.
Third, I too was discouraged and depressed during a 5-week hospitalization. A psychiatrist was called in for a consult and asked a series of questions. I don't know the official outcome of the meeting, but they didn't do anything different from then on. My impression was he felt I had a realistic outlook on what was happening. Unbeknownst to me, he might have been evaluating any suicidal thoughts. I didn't feel suicidal, but what was going to happen would happen whether I like it or not.
Fourth, I had a great support system and fantastic nurse. We called each other sunshine, although I was anything but cheerful. She must of drawn the short straw and I was forever grateful.
Lastly, it has taken time, but I never expected to be where I am today. The human mind is remarkable what it can adapt to.
Good Luck
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Helping someone cope with a long-term hospital stay
Hi Whitney,
As a 65 year old man, perhaps I can offer some suggestions.
If he was a business type, get him a subscription to the Wall Street Journal. Have it delivered to him at the hospital where he is.
For the next few weeks, the Olympics are on TV and I would try to engage him to see if he has interest in watching. There is something there for everyone that can be watched, discussed, and debated.
If he's a sports fan, baseball season is in full swing and football season is starting. Football preseason games were last weekend, with more coming up this weekend. If he is a fan (maybe not), find out when his team is playing and make sure he gets to watch. Baseball is also on right now with a month+ to go before the World Series. Make sure he knows the schedules of his teams.
If he likes to read, bring him a book or two by his favorite author or similar. I personally like Tom Clancy, and have read every book written by him. Made the time go by fast.
He might like his own music to listen to. I like my music (50's, 60's, & 70's, along with Souza). I have an Ipod, which my wife purchased for me. It was a challenge for me to get my music loaded correctly, but once done, it's great. With earphones it is unobtrusive to others and I very much enjoy passing the time with mine.
Lastly, if he has a hobby, he would like current magazines on the subject. Or, he may take an interest in a new hobby, like ancestry, coins, stamps, military, etc. You could bring it up and see if there's interest and then follow up as appropriate.
I hope he's feeling better soon.
Best regards,
Wayne
As a 65 year old man, perhaps I can offer some suggestions.
If he was a business type, get him a subscription to the Wall Street Journal. Have it delivered to him at the hospital where he is.
For the next few weeks, the Olympics are on TV and I would try to engage him to see if he has interest in watching. There is something there for everyone that can be watched, discussed, and debated.
If he's a sports fan, baseball season is in full swing and football season is starting. Football preseason games were last weekend, with more coming up this weekend. If he is a fan (maybe not), find out when his team is playing and make sure he gets to watch. Baseball is also on right now with a month+ to go before the World Series. Make sure he knows the schedules of his teams.
If he likes to read, bring him a book or two by his favorite author or similar. I personally like Tom Clancy, and have read every book written by him. Made the time go by fast.
He might like his own music to listen to. I like my music (50's, 60's, & 70's, along with Souza). I have an Ipod, which my wife purchased for me. It was a challenge for me to get my music loaded correctly, but once done, it's great. With earphones it is unobtrusive to others and I very much enjoy passing the time with mine.
Lastly, if he has a hobby, he would like current magazines on the subject. Or, he may take an interest in a new hobby, like ancestry, coins, stamps, military, etc. You could bring it up and see if there's interest and then follow up as appropriate.
I hope he's feeling better soon.
Best regards,
Wayne
-
wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Helping someone cope with a long-term hospital stay
My longest hospital stay was 15 days, so I don't know how helpful I can be. I will say, for what it's worth, that having music I enjoyed available to me at all times was a big help. What was really nice was being able to listen to a particular radio station that's a favorite of mine. Hearing the DJs I listen to every day brought some slight semblance of normalcy to my room. I was able to do this by using the hospital wi-fi system to stream their broadcasts from their website through my iPod and my laptop computer.
This could also work for TV programs he likes, local news, or any other broadcast-oriented programs that he watches or listens to regularly.
This could also work for TV programs he likes, local news, or any other broadcast-oriented programs that he watches or listens to regularly.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Helping someone cope with a long-term hospital stay
Hi,
First of all, best of luck to you and your family! Never lose hope.
As a music therapist in a large hospital setting who took care of many a cancer patient with a long-term hospital stay, I saw patients coping in a number of ways. My apologies if some these seem obvious, but sometimes we are not in the thinking mode.
1. Books = Is your dad a reader? If so, load him up on his favorite reads. Of course I've heard patients say there is only so long one can read, so perhaps not only books, but favorite magazines. It is easier to be interrupted during reading a magazine when a doc or nurse comes in, you can pick up an article again. Perhaps some Sudoku, crossword, puzzle books of some sort.
2. Music = Even if your dad isn't in to technology you can get a relatively cheap MP3 player, fill it up with his preferred music, and he is on his way. Also, if he does have access to a tablet, laptop, or cell phone of some sort, download Pandora and hecan hook into the hospital's wifi to listen to what he wants, when he wants it
3. Computer games = If he does have some type of laptop, or tablet, download some online games - Scrabble, Words with Friends, Yahtzee, word games, casino games, etc. Sometimes patients get interrupted a lot, and he can play when he wants to and simply stop when he is over it
Don't be afraid to make the hospital room as homey and comfortable as you need to. I have seen patients that were hospitalized for a long time, bring soft rugs from home that they put by their bedside, favorite pillows, favorite blankets, etc. It is you home during that time.
Hope this helps a little and take care,
Heather
First of all, best of luck to you and your family! Never lose hope.
As a music therapist in a large hospital setting who took care of many a cancer patient with a long-term hospital stay, I saw patients coping in a number of ways. My apologies if some these seem obvious, but sometimes we are not in the thinking mode.
1. Books = Is your dad a reader? If so, load him up on his favorite reads. Of course I've heard patients say there is only so long one can read, so perhaps not only books, but favorite magazines. It is easier to be interrupted during reading a magazine when a doc or nurse comes in, you can pick up an article again. Perhaps some Sudoku, crossword, puzzle books of some sort.
2. Music = Even if your dad isn't in to technology you can get a relatively cheap MP3 player, fill it up with his preferred music, and he is on his way. Also, if he does have access to a tablet, laptop, or cell phone of some sort, download Pandora and hecan hook into the hospital's wifi to listen to what he wants, when he wants it
3. Computer games = If he does have some type of laptop, or tablet, download some online games - Scrabble, Words with Friends, Yahtzee, word games, casino games, etc. Sometimes patients get interrupted a lot, and he can play when he wants to and simply stop when he is over it
Don't be afraid to make the hospital room as homey and comfortable as you need to. I have seen patients that were hospitalized for a long time, bring soft rugs from home that they put by their bedside, favorite pillows, favorite blankets, etc. It is you home during that time.
Hope this helps a little and take care,
Heather
Re: Helping someone cope with a long-term hospital stay
I was in for three months. I am 51 and not expected to survive. I had to learn to walk again and was in a diaper for quite awhile. All this is so overwhelming. You feel like you are never going to get better.
I would show him a lot of posts of people who have had long stays and are now doing well. Lots of snacks and candy. The food is TERRIBLE, so keep that in mind. Definitely a soft blanket, pictures, flameless candles and lamps. The fluorescent lights get old fast. His own pillow. Some small beanbag-type pillows to prop arms, etc, to get comfortable. Lavender oil, a small hand held massage device.
It sounds like you aren't nearby, but I hope someone can be with him often. I hated being alone there. The days just drag on with no visitors.
Definitely the music. Fun music and calming music.
If he likes animals, some places will let you bring them in. An animal always cheers me up.
Hope this helps.
I would show him a lot of posts of people who have had long stays and are now doing well. Lots of snacks and candy. The food is TERRIBLE, so keep that in mind. Definitely a soft blanket, pictures, flameless candles and lamps. The fluorescent lights get old fast. His own pillow. Some small beanbag-type pillows to prop arms, etc, to get comfortable. Lavender oil, a small hand held massage device.
It sounds like you aren't nearby, but I hope someone can be with him often. I hated being alone there. The days just drag on with no visitors.
Definitely the music. Fun music and calming music.
If he likes animals, some places will let you bring them in. An animal always cheers me up.
Hope this helps.
-
Anonymous
Re: Helping someone cope with a long-term hospital stay
Audiobooks.
Get him a subscription to Audible and buy him a few credits. He can listen to them on his cell phone, probably.
Those things saved my sanity.
Get him a subscription to Audible and buy him a few credits. He can listen to them on his cell phone, probably.
Those things saved my sanity.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Helping someone cope with a long-term hospital stay
Thank you all for your great ideas and support!
My father's wife brought her old laptop and last night I helped him set it up. He can now check his email and listen to NPR streaming, which I think will help a lot!
He was also moved to another room on the rehab floor, and this room gets cell services. One more thing to help him feel like he has control in his life.
I also noticed he now has a pen and pad of paper by his bedside filled with notes.
His diet has been upgraded (esophagus troubles from surgery) and food is a source of joy for him now whereas before he didn't even want to eat the "mush" he was allowed to eat.
Little things, but they've all made a big improvement on his mental state. 5 weeks down, 4 more to go for him ...
My father's wife brought her old laptop and last night I helped him set it up. He can now check his email and listen to NPR streaming, which I think will help a lot!
He was also moved to another room on the rehab floor, and this room gets cell services. One more thing to help him feel like he has control in his life.
I also noticed he now has a pen and pad of paper by his bedside filled with notes.
His diet has been upgraded (esophagus troubles from surgery) and food is a source of joy for him now whereas before he didn't even want to eat the "mush" he was allowed to eat.
Little things, but they've all made a big improvement on his mental state. 5 weeks down, 4 more to go for him ...
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whitneyvt - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 61
Re: Helping someone cope with a long-term hospital stay
That's good to hear! I hope the next four weeks go by quickly and with great results.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
9 posts
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