One of the most difficult scenarios that one can deal with is finding yourself newly married and then your spouse gets a devastating diagnosis. All the dreams you had as you committed your lives to each other just evaporate before both of you. You really meant 'in sickness and in health' but you just never really anticipated it would be this soon in your marriage.
When you're alone with your thoughts you may wonder if you can hang in for the duration. It may not be a terminal illness but a chronic debilitating illness, leaving them incapable of working. As is true with many chronic illnesses there may be a great deal of pain involved. With pain often comes medications. With long term medications may come addictions. All of these things may be issues that are now part of your daily life.
Discussions may ensue whether or not to have a family. If your male partner is going to be undergoing chemotherapy you may want to have the discussion as to whether or not to have his sperm frozen.
Your relationship is likely to change on many levels and your marriage, and commitment, will be tested. Your partner may become very depressed, easily agitated, and enveloped in 'woe is me.' Although these are very difficult to deal with they are a very normal response to their present situation. One of the best things you can do at that point is to plan for some counseling sessions. Your roles have been redefined and you both need to say good-bye to the life you both anticipated. Your partner may likely have guilt that they are not there for you, if you have children already that they aren't there to be a 'parent' the way they wanted to be--or may need to come to the realization that they may not live to watch their children grow up. That's a terrible burden to leave on your partner--and both sides really need to discuss what they want for their children.
Another major aspect that is likely to have changed in your relationship is sex. And, let's be honest, it is an important element to one's relationship. This is not the time to find 'wanderlust'. Find a way to enjoy sex with each other in whatever capacity you can. Do they need a massage, or a sponge bath? Make it erotic.
As a young couple it is likely that as the caregiver you will also need to be gainfully employed. There are pros and cons to this. It gives you a break away from your caregiving role while enabling you to have meaningful friendships at the office. That's an important aspect of your own mental well being. But don't use it as a refuge. It is easy to spend extra hours away from home while all your spouse has thought about all day is when you'll be back. The more hours you spend away the more that resentment may build between you.
Let's assume that your spouse is bedridden, or basically mostly convined to your home. What is it that you did together before you got married that you both could enjoy? Rent a movie? Make some popcorn? A romantic dinner? A night of cards? Scrabble? Have friends over?
If they are capable of helping then it is in both of your best interest that you ask them to prepare a wonderful meal for you both. Maybe you'll need to teach them a few culinary dishes but it will give them a sense of dignity--that they can still offer something to the relationship.
Leave them little love notes when you go off to work. "Looking forward to a nice evening listening to music tonight with my sweetie." Or bring home a massage therapist for both of you.
Remember that it's important to treat yourself well, but don't stop treating your spouse as your spouse.
Monday, February 18, 2008
Caregiving--How Do I Prepare?
The need for Caregivers continues to grow in our society. Presently there are 33 million Americans who are over the age of 65 and the continued advances in medicine assure us that life expectancy will continue to rise. With the first of the Baby Boomers reaching age 60, it is predicted that the 33 million will DOUBLE by the year 2030--making the senior care industry the biggest growth market.
Along with the increased needs of older Americans comes the economic reality--the majority of homes now have two working adults. Long gone are the days of the 1950's where Moms had the opportunity to stay home and raise the children. Financially that was no longer a viable option and women became more an more interested in their own education and careers. What society found was a generation of working women who were trying very hard to balance both a family and career. And now? Well many of these same women now fall into the 'Sandwich Generation.' Not only are they still raising their own children but now they find themselves needing to care for aging parents. Over the last decade this has become a new phenomena in our society.
So how do you cope? First, you must recognize what your limits are--but sometimes that sense of 'duty' or 'guilt' becomes overwhelming and you immediately think 'I need to be all things to all people'. Take a good look at your limitations--is distance from your parents a factor? Do you have room to house them in your own home? Will your home need to be remodeled to accomodate them? How do the other family members feel about this? What will their roles be? What are your other obligations during the day---a job? Children's activities? What is your support system? Are there services you can put in place to help your parents while you work?
Do you have the energy to add an additional major responsibility into your life? Have your parents purchased Long Term Care insurance? Does their retirement health plan provide any special coverage? Also, you may find the benefit of a Caregiver Support Group to be invaluable. It's a place to share your frustrations, your solutions, services that have worked for you, and to speak with others who are in the same circumstances. Very often your circle of friends diminishes during the role of being a caregiver because SOMEthing has to give in your life! And if your friends have not gone through the same experiences then you will find comfort in sharing with those who have and who are also in that same stage of life.
Now let's look at this from your parents view point. Do they want to leave their home or would they prefer to have services come to them? If they leave their home would they do well with the hubbub of family life? Do they want their independence? Is it safe for them to remain in the home? Can it be modified to make it safer? Would a system like Life Line monitoring device be enough to ensure their safety? Do they need help with meals? Could this be provided by Meals on Wheels or by a service? What about groceries? Is there a local delivery service? Or could this be provided by a contracted person? Laundry? Are they able to lift their laundry, change their beds, and are their washer and dryer in an easily accessible location within the home? Or, does it make sense to find a service provider who can help with that aspect? What about getting to medical appointments? Can they depend on someone else to get them there? Does their local senior center have volunteers who drive elders? Is there a service you can contract with to provide transportation? Will they need help with some daily chores like dressing, bathing, housekeeping? What types of services are available in their area?
Finding quality care at an affordable price is often one of the biggest concerns facing elders and their children. There are many alternative health programs available to people now, but how do you know if they will fit your needs or provide quality care? Your local Council on Aging, or Senior Center, should be able to help direct you to viable progams. You might also check with discharge nurses at the hospitals or with your parents' physician.
There are also some wonderful rehab programs that may be appropriate after an injury or illness. And many of the Assisted Living and Nursing Homes have space for temporary respite care. Respite care provides your loved one, with a safe environment in which to stay for several weeks while you may be on vacation with your family, are away on business, or face your own medical circumstances.
Often the role of caregiving is thrust upon you overnight as in when someone breaks a hip, has a heart attack or stroke. I always recommend that you have conversations with your parents BEFORE any of these things happen to know what their wishes would be if they become incapacitated. Learn what their health care will and will not provide. Ask them if it would be a wise decision to consider Long Term Care insurance. Ask if you can go over their finances with them so you know what is, and is not, available. This is also a good time to discuss their donor wishes, whether they want to be on life saving equipment, and if there are any circumstances under which they would not want to be resuscitated. Yes, these are difficult topics to broach but very important to know.
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Along with the increased needs of older Americans comes the economic reality--the majority of homes now have two working adults. Long gone are the days of the 1950's where Moms had the opportunity to stay home and raise the children. Financially that was no longer a viable option and women became more an more interested in their own education and careers. What society found was a generation of working women who were trying very hard to balance both a family and career. And now? Well many of these same women now fall into the 'Sandwich Generation.' Not only are they still raising their own children but now they find themselves needing to care for aging parents. Over the last decade this has become a new phenomena in our society.
So how do you cope? First, you must recognize what your limits are--but sometimes that sense of 'duty' or 'guilt' becomes overwhelming and you immediately think 'I need to be all things to all people'. Take a good look at your limitations--is distance from your parents a factor? Do you have room to house them in your own home? Will your home need to be remodeled to accomodate them? How do the other family members feel about this? What will their roles be? What are your other obligations during the day---a job? Children's activities? What is your support system? Are there services you can put in place to help your parents while you work?
Do you have the energy to add an additional major responsibility into your life? Have your parents purchased Long Term Care insurance? Does their retirement health plan provide any special coverage? Also, you may find the benefit of a Caregiver Support Group to be invaluable. It's a place to share your frustrations, your solutions, services that have worked for you, and to speak with others who are in the same circumstances. Very often your circle of friends diminishes during the role of being a caregiver because SOMEthing has to give in your life! And if your friends have not gone through the same experiences then you will find comfort in sharing with those who have and who are also in that same stage of life.
Now let's look at this from your parents view point. Do they want to leave their home or would they prefer to have services come to them? If they leave their home would they do well with the hubbub of family life? Do they want their independence? Is it safe for them to remain in the home? Can it be modified to make it safer? Would a system like Life Line monitoring device be enough to ensure their safety? Do they need help with meals? Could this be provided by Meals on Wheels or by a service? What about groceries? Is there a local delivery service? Or could this be provided by a contracted person? Laundry? Are they able to lift their laundry, change their beds, and are their washer and dryer in an easily accessible location within the home? Or, does it make sense to find a service provider who can help with that aspect? What about getting to medical appointments? Can they depend on someone else to get them there? Does their local senior center have volunteers who drive elders? Is there a service you can contract with to provide transportation? Will they need help with some daily chores like dressing, bathing, housekeeping? What types of services are available in their area?
Finding quality care at an affordable price is often one of the biggest concerns facing elders and their children. There are many alternative health programs available to people now, but how do you know if they will fit your needs or provide quality care? Your local Council on Aging, or Senior Center, should be able to help direct you to viable progams. You might also check with discharge nurses at the hospitals or with your parents' physician.
There are also some wonderful rehab programs that may be appropriate after an injury or illness. And many of the Assisted Living and Nursing Homes have space for temporary respite care. Respite care provides your loved one, with a safe environment in which to stay for several weeks while you may be on vacation with your family, are away on business, or face your own medical circumstances.
Often the role of caregiving is thrust upon you overnight as in when someone breaks a hip, has a heart attack or stroke. I always recommend that you have conversations with your parents BEFORE any of these things happen to know what their wishes would be if they become incapacitated. Learn what their health care will and will not provide. Ask them if it would be a wise decision to consider Long Term Care insurance. Ask if you can go over their finances with them so you know what is, and is not, available. This is also a good time to discuss their donor wishes, whether they want to be on life saving equipment, and if there are any circumstances under which they would not want to be resuscitated. Yes, these are difficult topics to broach but very important to know.
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Saturday, February 16, 2008
Time Management
An important aspect of being sucessful at being a caregiver is to effectively manage your time. Make certain that you have a good calendar/datebook. There are also a number of very good software programs for your computer as well.
You'll need to keep track of your loved one's doctor appointments (besides all your own appointments!). Even if you are caring for a parent who is living independently still, you should still keep a copy of their medical appointments. If you are able to attend appointments with them that is a good idea. Very often when people are in a doctor's office they are nervous and they don't remember to ask pertinent questions or to write down what the doctor tells them. Another set of listening ears can be a real benefit. And do bring a notebook to all doctor appointments.
Do stop trying to be Super Human. If you don't have older children of your own then hire a neighborhood teen to mow your lawn. See if your local grocery store delivers groceries. You can check http://PeaPod.com to see if they are available in your area. It's a great service and will save you a great deal of time each week.
Remember if you have children or siblings that you should ask for help when you need it.
Check local nursing homes, assisted living or retirement communities to see if they have respite care available for an overnight or so you can take a vacation without worryng about your family member. There is also a growing number of adult foster care families. Contact your local Council on Aging or Senior Center to speak with their outreach worker to help you find what services are available to you.
Do take care of yourself. This seems to be the hardest thing for every caregiver to do. But nothing could be more important than you taking care of yourself. If you become incapacitated who will take care of your loved one? So get regular physicals, and also take the time to spend with your friends and other family members as often as you can. Perhaps just a dinner and movie out will be enough of a break that you can return home refreshed. And maintaining those relationships in your life is important. If you isolate yourself from your friends then it becomes ery difficult after your loved ones death to resume your relationship on the same level.
You'll need to keep track of your loved one's doctor appointments (besides all your own appointments!). Even if you are caring for a parent who is living independently still, you should still keep a copy of their medical appointments. If you are able to attend appointments with them that is a good idea. Very often when people are in a doctor's office they are nervous and they don't remember to ask pertinent questions or to write down what the doctor tells them. Another set of listening ears can be a real benefit. And do bring a notebook to all doctor appointments.
Do stop trying to be Super Human. If you don't have older children of your own then hire a neighborhood teen to mow your lawn. See if your local grocery store delivers groceries. You can check http://PeaPod.com to see if they are available in your area. It's a great service and will save you a great deal of time each week.
Remember if you have children or siblings that you should ask for help when you need it.
Check local nursing homes, assisted living or retirement communities to see if they have respite care available for an overnight or so you can take a vacation without worryng about your family member. There is also a growing number of adult foster care families. Contact your local Council on Aging or Senior Center to speak with their outreach worker to help you find what services are available to you.
Do take care of yourself. This seems to be the hardest thing for every caregiver to do. But nothing could be more important than you taking care of yourself. If you become incapacitated who will take care of your loved one? So get regular physicals, and also take the time to spend with your friends and other family members as often as you can. Perhaps just a dinner and movie out will be enough of a break that you can return home refreshed. And maintaining those relationships in your life is important. If you isolate yourself from your friends then it becomes ery difficult after your loved ones death to resume your relationship on the same level.
Sunday, February 3, 2008
Making Your Home Safe
Safety is paramount in caring for your loved one. Many times the way our home is arranged is not really accessible or safe for someone who may be disabled or limited in their mobility. I recommend that you contact an Occupational Therapist to come out and evaluate your home. You can find an Occupational Therapist by contacting your hospital or rehabilitation center. You may also find them listed in the yellow pages. Their job is to help you make your home as safe as possible. They may even make suggestions as to structural changes which may be necessary for wheelchair accomodation. Perhaps you will need a ramp or will need to have doorways enlarged.
One of the typical changes will be a raised toilet seat with a grab bar beside it and grab bars in the bathtub and shower area. You may need a bath chair or bench in the shower that extends outside of the shower so they can transfer from a wheelchair and then slide over to be inside the shower. There will need to be organizers on the stool or bench that can hold soap, a wash cloth and shampoo. You will also need to make certain that there is a non-skid mat in the bath/shower as well as to step on when they get out. There are brushes that you can buy with long handles that allow your loved one to reach their feet or back.
Special attention needs to be given to the loved one's bedroom, their bathroom, any hallway they may need to use and any other room where they may spend a portion of their day. The kitchen may, or may not be, a place where they will spend time. If they are ambulatory, will they need handrails to get from one room to another? Or will they need to use a walker? A cane? Are there scatter rugs? They will need to be removed! Does furniture need to be rearranged for easier access? Do you have an intercom or baby monitor so you can hear them if they need you?
Hallways, bedrooms and bathrooms will all need nightlights. If they need to get up during the night, bright lights can disorient someone who has just woken up.
Make sure there are operational smoke alarms outside the bedroom and an accessible fire extinquisher.
Is there a cordless phone near both their bed and chair where they may spend a portion of the day? This is necessary if they will spend any time alone. Phones need to be programmed with emergency numbers, and yours, and have adaptive equipment if they are hard of hearing or large numbers if they have vision problems. Another necessity would be a medical or home alert necklace or bracelet. This would be a necessity if they wil be alone during the day.
On their bedstand they will need the phone (you can shut the ringer off in their room), a flashlight, and a bell to contact you if they can't yell for assistance. If they have emphysema, COPD, or asthma they may also need to have a breathing machine, or oxygen.
You will need to make certain that all obstacles are out of their way. That will include rugs and thresholds that may inhibit a walker, wheelchair or shuffling feet. And speaking of shuffling feet--do know what they are putting on their feet? NO SCUFFIES! Sneakers are best and they come with velcro tabs to close them.
The bathroom is the room where most accidents happen. If you have a tile or stone floor a fall there would certainly mean a broken bone or even a hip. You may want to have the bathroom fitted with a remant carpet piece. A slippery floor is not a good mix with a fragile person with mobility issues.
Consider the following do they need to have a hospital bed that lowers and raises? Or do they need rails to prevent falling? What about a beside commode?
A body pillow (cylindrical pillows that are about 3 to 4 feet long) can make them more comfortable. If they sleep on their side it goes between their knees and will help keep their spine in alignment. If they sleep on their back it goes under their knees which takes the stress off their lower back.
Kitchens--many people who need care are no longer active in the kitchen but if this is a big part of their identity it would be good to help set up the kitchen for their use. Coffee pot on the counter, a few dishes that they can use on the counter. If they have some memory loss there are locks you can get (and I strongly recommend) for the stove, cabinets that contain chemicals, and you can remove the knobs from the burners.
Take as many precautions as you can and your life will be easier in the long run.
One of the typical changes will be a raised toilet seat with a grab bar beside it and grab bars in the bathtub and shower area. You may need a bath chair or bench in the shower that extends outside of the shower so they can transfer from a wheelchair and then slide over to be inside the shower. There will need to be organizers on the stool or bench that can hold soap, a wash cloth and shampoo. You will also need to make certain that there is a non-skid mat in the bath/shower as well as to step on when they get out. There are brushes that you can buy with long handles that allow your loved one to reach their feet or back.
Special attention needs to be given to the loved one's bedroom, their bathroom, any hallway they may need to use and any other room where they may spend a portion of their day. The kitchen may, or may not be, a place where they will spend time. If they are ambulatory, will they need handrails to get from one room to another? Or will they need to use a walker? A cane? Are there scatter rugs? They will need to be removed! Does furniture need to be rearranged for easier access? Do you have an intercom or baby monitor so you can hear them if they need you?
Hallways, bedrooms and bathrooms will all need nightlights. If they need to get up during the night, bright lights can disorient someone who has just woken up.
Make sure there are operational smoke alarms outside the bedroom and an accessible fire extinquisher.
Is there a cordless phone near both their bed and chair where they may spend a portion of the day? This is necessary if they will spend any time alone. Phones need to be programmed with emergency numbers, and yours, and have adaptive equipment if they are hard of hearing or large numbers if they have vision problems. Another necessity would be a medical or home alert necklace or bracelet. This would be a necessity if they wil be alone during the day.
On their bedstand they will need the phone (you can shut the ringer off in their room), a flashlight, and a bell to contact you if they can't yell for assistance. If they have emphysema, COPD, or asthma they may also need to have a breathing machine, or oxygen.
You will need to make certain that all obstacles are out of their way. That will include rugs and thresholds that may inhibit a walker, wheelchair or shuffling feet. And speaking of shuffling feet--do know what they are putting on their feet? NO SCUFFIES! Sneakers are best and they come with velcro tabs to close them.
The bathroom is the room where most accidents happen. If you have a tile or stone floor a fall there would certainly mean a broken bone or even a hip. You may want to have the bathroom fitted with a remant carpet piece. A slippery floor is not a good mix with a fragile person with mobility issues.
Consider the following do they need to have a hospital bed that lowers and raises? Or do they need rails to prevent falling? What about a beside commode?
A body pillow (cylindrical pillows that are about 3 to 4 feet long) can make them more comfortable. If they sleep on their side it goes between their knees and will help keep their spine in alignment. If they sleep on their back it goes under their knees which takes the stress off their lower back.
Kitchens--many people who need care are no longer active in the kitchen but if this is a big part of their identity it would be good to help set up the kitchen for their use. Coffee pot on the counter, a few dishes that they can use on the counter. If they have some memory loss there are locks you can get (and I strongly recommend) for the stove, cabinets that contain chemicals, and you can remove the knobs from the burners.
Take as many precautions as you can and your life will be easier in the long run.
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