Quality of Life

Caring for a person with dementia in the home can be rewarding, but can also be a challenge and stressful. It's important to have a support system for the caregiver to call upon when new or different services are needed. I would suggest you provide your mother with information about a local support group of caregivers through the Alzheimer's Association and literature about caring for a person with dementia. You might also do some research on home care agencies in your area if she wants to hire someone. At some point your grandmother might need constant supervision and 4 hours will not be enough. Talk to your mother about having a plan for this. It is important to understand how the disease progresses and what to be prepared for so that you are not solving problems while in a crisis. Watch for signs that your mother is stressed, and perhaps then you can introduce some of these supports and services to her to consider. 

Making the decision to place a loved one in a nursing facility is quite personal, emotional and difficult. It usually comes when care in the home becomes unmanageable physically, emotionally or financially. You must also take into consideration your own health and age and how long you think you can be the primary care provider. Ask yourself if 4 hours a day of help is enough, or if it's too much of a struggle the rest of the time for you alone. Do you have a support system to help when he needs more care in the future? What if he needs more "skilled" care from a nurse or care during the night for incontinence and to prevent skin breakdown? Are you able to get the rest you need? These are some reasons why people choose to enter a nursing facility. There is no easy answer, but follow your instincts and plan ahead for increasing care needs as his conditions progress. 

Waiting for an emergency to make a move is never the best way to make it happen, but sometimes is the only way. My advice is to be prepared by visiting facilities and even trying to arrange for a visit for lunch with one or both of your parents. Start the process of paperwork if you can and talk to the doctor about what you are trying to accomplish since they will also need to fill out admission paperwork. Depending on the finances, sometimes one half of a couple chooses to enter assisted living even if the other is too resistant. If the home environment really becomes unsafe and unhealthy, you might need the assistance of a social worker from elderly protective services or a social worker from your town department of social services. You can also try to explain to your parents that they have a choice...to accept some help in the home or to move to a place where there is staff available. The choice could be taken away from them if they don't work with you in this process.
 

The only way to address running out of Medicare days is to file an appeal with Medicare. The social worker at the nursing home should provide you with this option in writing, and inform you about the process of how to proceed. I would ask the therapist who made this comment to explain why he/she thinks your mother is not in pain and to give you examples to back up this assertion. Sometimes, patients are observed by staff doing certain things that do not produce pain, while they cannot do the same things in therapy without pain. This can lead to this type of comment.

If you feel this therapist is negatively biased in working with your mother, I would request another therapist work with her or ask for the therapy supervisor to do an assessment.
 

There are many reasons why she might be tired all the time and dizzy, so it's best to have a full medical work-up through her primary care doctor or perhaps a geriatrician, if you have one in your area. A review of her medications, blood work, nutrition, mood, and social activities should be reviewed and discussed. 

Long-distance caregiving can be a challenge. You will likely need to go in person to make any changes in this situation, or enlist a local geriatric care manager to help facilitate some change. The things I would look into are Adult Day Care or a Senior Center to increase socialization and stimulation. Some places provide transportation, lunch and skilled nursing if medications need to be given. Isolation and withdrawal from activities can often be a symptom of depression in the elderly, so you should have him evaluated for this by his primary care doctor.
 

While in the hospital, an outside care manager can be very helpful in being an advocate for the patient, and also communicating with the staff, getting information, participate in discharge planning and helping you cope with a stressful situation. The patient, or the patient’s legal representative, must consent to having an outside person receive information from the hospital staff, and often must sign a release of information form, per the HIPPA protocols, which protect patient information and privacy. There are also hospital case managers who will help with discharge planning, and it is important for an outside care manger to communicate with this person on your behalf.

I would recommend you contact the local Alzheimer’s Association office for a support group in the area. You can search on alz.org. You might also want to consider a consultation with a geriatric care manager. You can look at caremanager.org for information about what a GCM can offer. Keep in mind that every patient is different and will have different needs as their condition progresses—that timetable is also very variable and you will need support and information every step of the way as your dad’s situation changes.

Here are 2 articles that address your question about boredom:
http://www.parentgiving.com/elder-care/senior-engagement-fighting-boredom-is-essential-for-quality-of-life/

www.care2.com/greenliving/10-boredom-busters-for-frail-seniors.html#

In my experience boredom can lead to depression and loneliness so it is important to introduce some of these activities into a daily routine. In addition, I have seen that sometimes an outside person can be more
effective than family in doing activities with an elder. Perhaps you might consider a companion for your mother a few days a week to also give your father a break.

Activities in nursing facilities need to be designed to meet the needs of the population you are working with. This can change depending on the current residents and the group you are trying to reach. Here is a website that will help you: http://www.nursinghomeactivitiesresource.com/share.shtml

Keep in mind the cognitive and physical problems your residents have and modify the activity for this. I am in favor of smaller group activities in nursing homes where you can try to group people with similar interests or strengths. This can be a challenge though due to the structure of the setting. From my experience visiting clients in nursing homes, I can tell you that one thing I do not recommend is TV as an activity. Too often I observe residents sitting in a common area with a TV on, nobody watching or inappropriate programming playing. Consider utilizing more music when there is no structured activity going on rather than TV. Studies have shown that playing music helps to decrease agitation and difficult behaviors with dementia patients. This is something to consider as well.

One of the most important aspects of caregiving is knowing when you need help. Most people cannot do it all alone, so it¹s important to build a support system for yourself. If you are feeling very stressed, anxious,
depressed, not sleeping well, or losing weight, you probably need to look for and accept help in your role as caregiver. It is important to take care of yourself as a caregiver so that you can continue in this role. Many people can become ill themselves if they do not accept outside assistance. Identify who you have in your life who can be a support to you. This can be family, friends, neighbors, clergy, or medical professionals. If you are feeling alone without these supports, you might need to reach out to professionals in your community. Call your town hall or senior center and speak with a social worker who can help connect you with senior service providers in your area, a support group, or resources that can help with respite care funding to give you a break. 

An evaluation of the proper type of walker or assistive mobility device, is best left to a trained physical therapist. There are many factors to consider when choosing the safest type of device, including the surface it is used on in the home. I suggest you contact your (or your loved one's) doctor for a referral for physical therapy, either outpatient, or in the home, if  homebound, through a VNA (visiting nurse association). 

Dear Gina,
There are some professionals that can help you with this situation since it cannot be solved over the phone or long distance. I suggest you contact a professional geriatric care manager (GCM) in their area who can meet with your parents and help sort out a solution that you all can live with. The best way to find a qualified GCM is to search on caremanager.org, the website for the National Association for Professional Geriatric Care Managers. If you enter their zip code, you will get names of local GCMs. There are also suggestions on this website about how to choose a GCM. I suggest you choose someone who has a social work background since there will need to be a fair amount of counseling. Although this will be a private pay consultant, the cost my be well worth it to help all of you come to some resolution of this situation.

A GCM will come up with a plan with them and you to solve this problem. If it involves a move for one or both of your parents, a GCM will also help you to plan and coordinate the move, which is a daunting task for a long-distance daughter and an elderly couple. There are also Senior Moving specialists, that a GCM will know about to help with the whole moving process, from cleaning out, sorting, donating, selling and the actual packing and moving. Sadly, some couples do separate during their elderly years since needs can change and the ability to cope with long-standing marital issues seem to no longer be possible. You might need to consider this for your mother’s well-being, and have a plan to monitor your father if he stays in El Paso alone. A GCM would be a valuable resource in this scenario. 

A Certified Senior Advisor is a person who has completed a training program and exam through the Society of Certified Senior Advisors. The educational background of certified senior advisors may vary greatly. They can be accountants, financial planners, realtors, reverse mortgage specialists, insurance agencies, homecare providers and more. There is no prior educational requirement for this designation, but usually these are people in a field that deals with seniors in some way. Visit http://www.society-csa.com for more information.

This is quite different from a geriatric care manager, who must have training, education, experience and certification in the field of geriatrics in order to be a member of the National Association of Professional Geriatric Care Managers. Visit www. caremanager.org for further information.

When there is a loss of multiple senses—hearing and vision in this case, then there is certainly more of a challenge to stay engaged in activities. First, I would have her hearing assessed and determine if there is anything that can help her hear better. Many older people resist this, but it¹s important to keep trying. There are many new devices available that might work better than in the past or be more comfortable and discrete. Second, since she is in assisted living, I would make sure that the staff are doing all they can do to engage her and bring her out to activities. Spending too much time alone and feeling isolated or bored can lead to depression, so it¹s important to encourage social interactions.

Caring for a person who needs a lot of attention and is demanding of your time can be quite a challenge. Independent activities need to be specific to the individual¹s abilities and interests. You might want to think about things she enjoyed doing in the past like puzzles, crafts, reading or listening to books on tape, music, etc. Consulting with professionals like occupational therapists can guide you on how to modify activities to accommodate specific deficits. You might also consider adult day care, where she could participate in activities in a structured environment along with socialization, lunch, and staff trained to work with seniors. This would also give you a break as the caregiver.

Resistance to moving is a real challenge. I have found that timing is very important when trying to orchestrate this transition. Sometimes you have to wait for a health crisis to make it happen. I am currently working with a couple in their late 80s who have resisted moving out of their home for years. They are now receptive because one has Alzheimer’s disease that has progressed to the point where the spouse is feeling overwhelmed and anxious. Now she can see the value of living closer to family, in a supportive environment with specially trained staff, and not having to manage the upkeep of a house. Also, a geriatric care manager has the specialized expertise to help you through situations where the resistance is great, safety is an issue and the process seems totally overwhelming. Consider hiring such a senior care expert.

A very important part of planning for the aging process is a realistic evaluation of the current housing situation. When elderly or disabled people try to live in an unsuitable environment, inevitably a crisis or major safety issue can arise. It can also lead to an unnecessary nursing home admission if there is a sudden change in health or ability to function in that environment. This might include a home with a lot of stairs, laundry in the basement, doorways that are too narrow to fit a walker or wheelchair or with parking outdoors, which can be dangerous if you live in an area where there is snow or ice.

I have worked with many people struggling to help their parents make a transition to a different housing arrangement. Often this is to an assisted living facility. It is very important to visit several facilities in your area so that you can have a basis of comparison. If there are any cognitive issues or dementia, it is very important to find a facility that has a memory care or cognitive program. Not all assisted living facilities have this and it will ensure that another move will not be needed. I am always trying to stay one step ahead by thinking about what will likely come next in the aging or disease process. So try to find a place that can handle the next stages your parents might need in terms of care. Assisted living is a great option for people who enjoy socializing and want to be in an environment where there are meals and the support of staff who can help with personal care and medical oversight.

If assisted living is not affordable and there is a risk of outliving the financial assets, then even more planning is needed because you should be looking into affordable housing options for seniors. Most low-income HUD housing for seniors have wait lists of several years. If you contact your town or city social services department you should be able to obtain information about this option. But the key is to be able to recognize that this is where you are probably headed so you will have this option down the road. It cannot hurt to fill out an application to get on a wait list. Eligibility is based on income and assets, and the rent, if you do move into this type of housing, is based on a percentage of your income. Some senior housing complexes have social activities and meals, and others do not.