Making the decision to provide care at home for your spouse is a huge decision that affects both spouses, and all others in the family.
The well spouse will find that it is one of the most demanding tasks s/he has ever undertaken. The commitment is major, and cannot be taken lightly. Once the choice is made to be responsible for in-home care, it is entirely up to the Non-Parkinson’s spouse to help the Parkinson’s spouse get as much out of life as possible.
If you can afford it, think about being the “Care Manager” rather than the “Caregiver.” It may maintain a better spousal relationship.
ATTITUDE should be the first consideration; attitude of the spousal caregiver, as well as attitude of the ailing spouse. If either party considers the tasks to be chores, they will probably not be done very well and neither spouse will be happy or content. When making the commitment to do everything that you can for your spouse, you make sacrifices as they are required.
Meeting with your elder-law attorney should be one of the first things you take care of. Both spouses should have their Will and appropriate Powers of Attorney in place. This paperwork should define the limits on health care that either spouse is willing to accept in a crisis situation. It should also describe the procedures for transferring health care decisions to another party when either spouse becomes ill and incapable of making those decisions. These documents take the need for critical decisions out of the hands of ANY caregiver, spousal, family or otherwise. It is important that all commercial care providers are aware of the stipulations in the Wills and/or specific Powers of Attorney and have access to a copy of those instructions.
The non-Parkinson‘s spouse/caregiver must think about the change of command if something should make him/her incapable of carrying out his/her abilities as caregiver to the Parkinsonian spouse.
Providing a safe environment for the ill spouse is critical. Occupational or Physical therapists or Geriatric Care managers, among other professional providers, are good resources for determining the need for additional safety devices in your home. For instance, you may need to install safety bars and handrails in strategic areas – like bathrooms, stairways, areas across from open stairways, and other potentially hazardous areas. A shower chair or fold-down seat can make bathing or showering much safer. Elimination of loose carpets or throw rugs, extension cords, low furniture, furniture with extended legs, etc., is critical to avoid tripping and falling.
Special considerations need to be made for multi-level homes; therefore, single-floor living may be the best arrangement, albeit not always possible. If you have a multiple level home, consider installing a stairway lift to ensure safe passage from one floor to another. Consider using alarms to detect unsafe actions, such as getting out of a chair or bed without assistance.
In keeping your spouse safe at all times, it may be necessary to install a baby monitor or intercom to hear your spouse when you are in another part of the house. Special locks or gates for stairway doors or entries, and arming your home security system (if you have one) to sound an alarm if an outside door is opened are just a few considerations.
As a person is advancing though Parkinson’s they are likely to have increased medical needs; therefore, doctor visits and medications will need management. Schedule regular appointments and provide assistance in transporting your spouse to and from these appointments. Sit in on ALL doctor visits and make sure you get satisfactory answers to any questions you have. Maintain adequate supplies including necessary medications and work toward administering them as directed. Helpful, is the use of a pill container that divides medications by the day of the week (and the time of day) which can be prepared in advance. If the Parkinsonian has difficulty swallowing pills, and if the pills ARE NOT timed release, try crushing them and mixing them with pudding or some other soft food. Ask the doctor or pharmacist if you are unsure if a medication can be cut or crushed.
Once you have made the decision to be the primary caregiver, it is critical to take very good care of your own health. Get regular physical examinations, if you take medications take them as prescribed, exercise regularly, stay socially active, eat nutritionally well. You cannot help the Parkinson’s spouse if you are ailing yourself.
Taking care of an advancing Parkinson’s spouse may mean taking on additional other household chores such as shopping for groceries, planning and preparing meals, doing laundry and housecleaning. Additionally, your Parkinson’s spouse will likely need assistance with personal care – using the toilet, bathing, dressing and the other activities of daily living.
As the illness closes in, the world seems to become smaller and more restricted, which can be very frustrating for both of you. In addition to the world closing in on you the Parkinsonian becomes more insular and withdrawn. To the extent possible, and appropriate (dementia considerations), try seeing things from the Parkinsonian’s perspective. Be as patient and compassionate as you can. Adjust and improvise when you have to and you will have the best chance to overcome problems as they arise.
When mealtimes become challenges, remember the foods that the ill spouse especially enjoyed, and do your best to include those favorites regularly. If swallowing becomes a problem consult a speech pathologist for guidance. If and when you need to puree food for safe consumption purchase a small food processor. There are books available such as the “Non-Chew Cook Book” for additional meal preparations and food type ideas. Baby food is also an alternative. Thickeners are available for beverages or thin liquids. These are readily available at most pharmacies. Specially-designed, included weighted, eating utensils and dishes are available to make it easier for the Parkinsonian to feed him/herself. There may be a time when you have to feed the Parkinsonian. Use of a bib or apron is helpful in protecting clothing and keeping the Parkinsonian dry and clean. To overcome some of the challenges of swallowing and reduction of appetite, the ill spouse may need to eat small meals more times a day. Keeping appropriate snacks on hand is very helpful.
A journal is recommended as you keep vigil over the ill spouse’s daily activities which include monitoring routine activities such as eating habits, bowel movements, urgency or frequency of urination, increasing or decreasing medications, bathing habits, getting in and out of bed, dressing, and just ambulating or getting around. Be mindful of and ready to offer assistance if there appears to be a struggle.
Look for activities that the ill spouse can be involved with so that s/he feels useful. Consider asking the Parkinsonian for help with tasks such as sorting and folding laundry, drying dishes as long as they are not too heavy or fragile, setting the table, dusting, and so on. These chores can be accomplished even when the Parkinsonian is wheelchair-bound.
Unless cognition deficiencies or dementias are in place, remember to continue speaking to the ill spouse – ask for advice or input about the care you are giving, about their involvement in performing household tasks, planning meals, shopping for groceries, or planning social activities. Keep the Parkinsonian involved in both of your daily lives as much as possible and certainly involved in any decision that directly affects him/her.
A Parkinsonian may not be able to dress without assistance, but they may still be able to choose an outfit. Manicures, pedicures, and regular visits to the barbershop or hair salon can do wonders for self-esteem and optimism. Comparing how things were in the past to how they are to do is generally not productive or helpful. Look for the positive, look for activities that include other family members or friends to help generate hope, inspiration and a feeling of support. Creativity and communication are the best powers in getting through this journey. Love, laughter and a touch of folly will help both of you have the best quality in your lives.