How can I best be supportive of my mother as she's experiencing medical issues?
May 21, 2010 8:29 PM Subscribe
My still young-ish mother is having some health issues. I'm far away, but want to help and be supportive. What can you recommend?
My mother is 58 -- not young per se, but still a while from retirement and still wants to be very active. In the last couple of years, she's had uterine cancer, a subsequent hysterectomy, a diagnosis of Type II diabetes, and an ongoing knee problem stemming from a skiing injury sustained in her 20s. More recently she's been diagnosed with severe bone density loss and curvature of the spine; she's lost a couple of inches in height already, and the curvature is such that her lower back has been extremely painful and she can barely stand up some days, even with theraputic massage, painkillers, and cortisone shots. This is further exacerbated by her difficulty walking on the bad knee.
She needs a knee replacement, (major) surgery is a future option for her back, and the diabetes is being managed but is definitely related to being overweight -- which is hard for her to manage, seeing as she can barely walk. These will all be managed in time, I hope. But right now, she finds her mobility severely restricted for someone her age, and though my dad helps her with day to day stuff and she can still go to work, the prospect of being able to fly or drive to visit me, or go on a family vacation where she'll have to walk around for touristy things, is proving challenging. This is the first time as a family that we're in a financial position to really take family vacations (now that my brother and I are graduated and employed), but she has expressed a lot of frustration and sadness that she feels she'd be "holding us back".
So, first set of questions: what can I do to help her with her frustration -- and help try to make family vacations, or even a trip to visit me in my elevator-less third floor apartment, a possibility? How can I encourage/support getting the admittedly overwhelming medical treatments she's going to need to improve at all? And, being several states away, what can I do to make her day-to-day life easier?
Now the other part. Both her parents were diagnosed with Parkinsons in, if I remember correctly, their late 60s, after a lifetime of activity and athletics. They quickly lost a lot of mobility and it was really sad to see. My grandmother and great-grandmother also both experienced the same osteoporosis my mother is now seeing. Because of the family history and what she watched her mother and grandmother go through, I know my mother is really intimidated by what she's currently going through and what, genetically, she may have yet to go through. (And as her daughter, boy am I excited to get old too...) Even if we can manage the physical aspects of her medical issues, I think the threat of a fully sound mind inside a body that has betrayed you -- just as you've reached the point in life you can relax, travel to see family, and in the next 5-10 years be visiting grandkids -- is incredibly scary to her.
So, next set of questions: What can I do to be supportive on this side of it? Being young and (of course) invincible as I am, though I intellectually know I'm likely to be facing many of these same issues at some point, they seem far away and something that can be mitigated -- so I'm having trouble understanding the best way to relate to Mom and help her deal with the immediacy of what she's facing.
Whether you've gone through this sort of thing yourself, or you've been a caretaker for a parent, I'm really interested to hear your thoughts.
My mother is 58 -- not young per se, but still a while from retirement and still wants to be very active. In the last couple of years, she's had uterine cancer, a subsequent hysterectomy, a diagnosis of Type II diabetes, and an ongoing knee problem stemming from a skiing injury sustained in her 20s. More recently she's been diagnosed with severe bone density loss and curvature of the spine; she's lost a couple of inches in height already, and the curvature is such that her lower back has been extremely painful and she can barely stand up some days, even with theraputic massage, painkillers, and cortisone shots. This is further exacerbated by her difficulty walking on the bad knee.
She needs a knee replacement, (major) surgery is a future option for her back, and the diabetes is being managed but is definitely related to being overweight -- which is hard for her to manage, seeing as she can barely walk. These will all be managed in time, I hope. But right now, she finds her mobility severely restricted for someone her age, and though my dad helps her with day to day stuff and she can still go to work, the prospect of being able to fly or drive to visit me, or go on a family vacation where she'll have to walk around for touristy things, is proving challenging. This is the first time as a family that we're in a financial position to really take family vacations (now that my brother and I are graduated and employed), but she has expressed a lot of frustration and sadness that she feels she'd be "holding us back".
So, first set of questions: what can I do to help her with her frustration -- and help try to make family vacations, or even a trip to visit me in my elevator-less third floor apartment, a possibility? How can I encourage/support getting the admittedly overwhelming medical treatments she's going to need to improve at all? And, being several states away, what can I do to make her day-to-day life easier?
Now the other part. Both her parents were diagnosed with Parkinsons in, if I remember correctly, their late 60s, after a lifetime of activity and athletics. They quickly lost a lot of mobility and it was really sad to see. My grandmother and great-grandmother also both experienced the same osteoporosis my mother is now seeing. Because of the family history and what she watched her mother and grandmother go through, I know my mother is really intimidated by what she's currently going through and what, genetically, she may have yet to go through. (And as her daughter, boy am I excited to get old too...) Even if we can manage the physical aspects of her medical issues, I think the threat of a fully sound mind inside a body that has betrayed you -- just as you've reached the point in life you can relax, travel to see family, and in the next 5-10 years be visiting grandkids -- is incredibly scary to her.
So, next set of questions: What can I do to be supportive on this side of it? Being young and (of course) invincible as I am, though I intellectually know I'm likely to be facing many of these same issues at some point, they seem far away and something that can be mitigated -- so I'm having trouble understanding the best way to relate to Mom and help her deal with the immediacy of what she's facing.
Whether you've gone through this sort of thing yourself, or you've been a caretaker for a parent, I'm really interested to hear your thoughts.
If you communicate with airlines and airport personnel, they are really good about having a wheelchair or motorized trolley thing ready to help people who have a hard time getting around. My elderly grandmother regularly flies to visit family and although she can still get around ok, (she's slow moving and quick to tire) she is courteously zipped around by airport staff in a wheelchair.
Is there some gentle physical therapy or exercise that your mom could do to help her stay flexible? Maybe some kind of water based exercise that is easy on the joints? Seconding the suggestion to getting her a nice ground floor hotel room when she comes to visit you.
You are a good daughter to be thinking of your mom's comfort.
posted by pluckysparrow at 9:47 PM on May 21, 2010 [1 favorite]
Is there some gentle physical therapy or exercise that your mom could do to help her stay flexible? Maybe some kind of water based exercise that is easy on the joints? Seconding the suggestion to getting her a nice ground floor hotel room when she comes to visit you.
You are a good daughter to be thinking of your mom's comfort.
posted by pluckysparrow at 9:47 PM on May 21, 2010 [1 favorite]
My mother also has (different, but lasting) health problems, and one of the unlisted side-effects of facing physical (and -- though hopefully not for your mom -- neurological) challenges is feeling like a burden on one's family, and like one is no longer needed. Let your mom know that you still need her! Call her up and ask her for advice now and then. Tell her about your relationships and job frustrations. Remind her occasionally of everything she adds to your life. This may be the biggest favor you can do for her now.
On the travel front, are there cruise ships or trains (with private compartments) that leave from your mother's home city? Those might be options that would make her a bit more comfortable than driving or flying. If the transport is somehow manageable, a beach/snorkeling vacation might be nice for your family -- floating in the water looking at fish and coral is fun for pretty much everyone who can swim, but requires fairly minimal physical effort. Likewise with lying on a lounge chair reading a book.
In terms of the potential Parkinsons -- that is a devastating and scary thing, and I hope neither your mother or you have to go through it. But both right now, and in the hypothetical future where she does have the disease, my advice would be to accept and respect what she tells you about how she feels and what's happening to her. I'm close to someone with a brain injury, and she often tells me that even lifelong friends think she's exaggerating, or faking, or could do more if she really tried and concentrated and got more rest. In part, I think this is optimism or an attempt at encouragement on their part, but she experiences it as frustrating and disrespectful. So do your mother the favor of taking her at her word and not trying to look for an imaginary bright side or loop-hole or positive thinking remedy, and continue to connect with her as a real, valuable, self-aware person however and whenever you can. Also, in this eventuality, think about what you can do to support and aid your father, who no doubt will be facing tremendous challenges both practical and emotional, whether it's coming to stay with your mom to give him a break, or just calling him up with a funny story to make him laugh.
posted by unsub at 10:06 PM on May 21, 2010 [2 favorites]
On the travel front, are there cruise ships or trains (with private compartments) that leave from your mother's home city? Those might be options that would make her a bit more comfortable than driving or flying. If the transport is somehow manageable, a beach/snorkeling vacation might be nice for your family -- floating in the water looking at fish and coral is fun for pretty much everyone who can swim, but requires fairly minimal physical effort. Likewise with lying on a lounge chair reading a book.
In terms of the potential Parkinsons -- that is a devastating and scary thing, and I hope neither your mother or you have to go through it. But both right now, and in the hypothetical future where she does have the disease, my advice would be to accept and respect what she tells you about how she feels and what's happening to her. I'm close to someone with a brain injury, and she often tells me that even lifelong friends think she's exaggerating, or faking, or could do more if she really tried and concentrated and got more rest. In part, I think this is optimism or an attempt at encouragement on their part, but she experiences it as frustrating and disrespectful. So do your mother the favor of taking her at her word and not trying to look for an imaginary bright side or loop-hole or positive thinking remedy, and continue to connect with her as a real, valuable, self-aware person however and whenever you can. Also, in this eventuality, think about what you can do to support and aid your father, who no doubt will be facing tremendous challenges both practical and emotional, whether it's coming to stay with your mom to give him a break, or just calling him up with a funny story to make him laugh.
posted by unsub at 10:06 PM on May 21, 2010 [2 favorites]
Want to post again because I'm so impressed with the last two answers. I forgot about using a wheelchair in the airport -- it's fantastic! It's free on request, and you get taken from check-in counter to gate, including being zipped to the front of the security line. Definitely worth using.
And unsub is absolutely spot on, especially the last paragraph. It's so easy for attempts to be encouraging to be felt as frustrating and disrespectful. Again, I say encourage your Mom to tell you what she's feeling and what she needs. And definitely reach out to your Dad; he is indeed going to need every funny story he can get, and every loving hug.
Good luck to all of you.
posted by kestralwing at 10:18 PM on May 21, 2010 [1 favorite]
And unsub is absolutely spot on, especially the last paragraph. It's so easy for attempts to be encouraging to be felt as frustrating and disrespectful. Again, I say encourage your Mom to tell you what she's feeling and what she needs. And definitely reach out to your Dad; he is indeed going to need every funny story he can get, and every loving hug.
Good luck to all of you.
posted by kestralwing at 10:18 PM on May 21, 2010 [1 favorite]
Actually, I would look at urban vacations. There are a lot of advantages; lcurb-side to gate airport assistance makes the travel part easier, and once you're at your destination, limited transfer time from the airport to the city centre itself. Cities are nice in that tourist destinations tend to be closely grouped, too.
Cities also tend to be wheelchair accessible, and you can usually arrange to rent a wheelchair or scooter (great idea!) in the city or borrow one from the American Red Cross.
But if your mother baulks at the mobility assistance aids (its a big psychological hurdle for some people, although my attitude was "thank God, I can sit down!") that make a city vacation really do-able, I think the idea of a cruise is a good one if you pay careful attention to the port destinations. I'd look for a cruise where the focus is more on spending time together on board a ship with entertainment, educational lectures, etc, with a focus on at sea days rather than hopping off in a new port every day.
posted by DarlingBri at 10:39 PM on May 21, 2010 [1 favorite]
Cities also tend to be wheelchair accessible, and you can usually arrange to rent a wheelchair or scooter (great idea!) in the city or borrow one from the American Red Cross.
But if your mother baulks at the mobility assistance aids (its a big psychological hurdle for some people, although my attitude was "thank God, I can sit down!") that make a city vacation really do-able, I think the idea of a cruise is a good one if you pay careful attention to the port destinations. I'd look for a cruise where the focus is more on spending time together on board a ship with entertainment, educational lectures, etc, with a focus on at sea days rather than hopping off in a new port every day.
posted by DarlingBri at 10:39 PM on May 21, 2010 [1 favorite]
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The most specific advice I have is: mobility scooter. Smallish electric scooters that break down and fit in car trunks. There are all sorts, different sizes and weights and uses. Lots of information about them online, and you can rent them from most businesses that rent medical equipment. I bought mine, and it changed my life for the better immeasurably. I can go to the library, and into the library, alone. I can go for walks with my husband. I can go to Big Box Stores with my daughter. Your family can still go on vacation. (A special pleasure is saying "You wait here and I'll go up ahead and see what's around the bend." Also hearing "Wait up, Mom!")
If you want her to visit you, find a good motel and get her a ground floor unit. She'll want to come up your stairs -- once -- to see where you live, but after that, you go see her. It's still a visit.
Considering what her mother and grandmother went through, I'm sure your Mom has some opinions about quality of life and what help others can offer. Ask her. Listen to her. Be sure that it's her who is intimidated, not yourself. Listening without immediately offering a solution is a great gift. Telling her what you love and admire about her, especially when physical limitations loom, is an even greater gift.
posted by kestralwing at 9:29 PM on May 21, 2010