Long Term Care Decisions Can Take an Emotional Toll


Believe me, we know all about caregiving in our household. Not only did I take care of my grandmother, who had Alzheimer's, but Clayborne now needs help with every Activity of Daily Living. Bathing was the first, as it is with most folks. As the Multiple Sclerosis progressed, he needed more assistance by the year. Now, he can no longer walk, toilet, dress, transfer and sometimes even eat by himself. This is the world of long term care.

Being "tied at the hip" so to speak can take it's toll on any marriage, but having to be by your loved one's side practically every moment of the day and night, as well as being a "go-fer", can feel overwhelming at times. Now, don't get me wrong, there isn't anyone I'd rather spend my time with more than my husband. We have a lot of laughs (as well as arguments). We find each other mentally stimulating, emotionally safe and spirtually uplifting - most of the time. We feel blessed. He's my best friend and I adore him. Even so...

As Clayborne's physical limitations have grown, our world has shrunk. I love adventure, so during the first years of marriage, we moved 17 times in 15 years and travelled for 2 years. Hence, we don't have many friends in our current local. There are only a few people who visit, so our socializing has become mostly phone-based. Clayborne is a social butterfly and being home-bound is particularly hard for him.

Things we took for granted, like going to the movies or out to eat or even to the dentist, now take huge amounts of energy. Since we cannot afford a reliable wheelchair accessible vehicle, Clayborne stays inside the house, except when I can muster the strength to lift him into and out of the van and his wheelchair. It's also up to me to push the wheelchair, so by the end of an outing, I'm pretty much toast. Yet, getting out of the house helps keep away depression, so we try to do it as aften as possible. Lately, we get out once every 2-3 months.

Sound bleak? Would be too much for you? Well, we don't really have a choice, as Clayborne has no Long Term Care insurance, we have no family nearby to help, and we don't have enough savings or income to pay for in-home care, let alone facility care.

Of course, we do want to stay together as long as possible. Who wouldn't choose home and snuggles over a facility? Yet there may come a time when I can no longer take care of Clayborne by myself. To be honest, if/when we find ourselves in that situation, we don't know what we'd do. Perhaps, the dreaded Welfare...

Anyone who does not have long term care plans can find themselves in the same predicament.

If it comes to the point where Clayborne must have professional care, I'll probably have the same feelings that an Alzheimer's patient's wife had (click blue link below). The ol', "Can't live with 'em, can't live without 'em"... relieved from the daily challenges of caregiving, but feeling guilty for having the freedom that my husband cannot share.

Having to place your loved one in a care facility is hard enough. Trying to come up with the money to pay for their care can make a difficult situation unbearable. Don't wait until it's too late. Speak to your LTCi Buyer's Advocate to see if long term care insurance is right for you and your family.

Sun City, AZ - It is universally agreed that one of the most difficult decisions a caregiver must make is deciding when it is finally time to choose a long term care facility for a loved one. Accepting that home is no longer enough is tremendously difficult for all concerned. Not only must families handle the grief, heartbreak and guilt of the placement, but they must also decide which type of care facility will be most appropriate for a loved one - plus, how to manage family finances. This period is, without a doubt, one of the most stressful for any family, especially for the caregivers.

For the caregiver the bitter grief of separation and lingering guilt about the choice continues throughout this period. The strain can be made even harder by the patient who pleads to return home or asks staff to call the caregiver at home. The guilt can be devastating. As friends, family and community we can help caregivers at this time. Telephone the caregiver often, or better still drop by for a visit. Listen to their concerns and offer your support. A caregiver who has been out of the "social circle" for awhile will welcome an invitation to lunch or other pleasant outing.

Please don't forget the person in the care facility. Visit often, take old photos to jog pleasant memories and stimulate conversation. Knowing that friends and family continue to visit is a great comfort to the caregiver. We often hear from caregivers dealing with these issues.

Connie Metsger, director of Sun City's Residence for Alzheimer's Care, offers good advice:

Dear Connie: My husband has recently moved into an Assisted Living Facility. He has had Alzheimer's disease for five years and has reached a stage where I could not manage his care at home any longer. I feel horrible about leaving him there, and I cannot get the image of his sad eyes out of my mind. The thought that we shall never again share the same home often brings me to tears. My friends tell me I made the right choice, and I know that they are correct. I have tried to get back to my old activities, but I feel so callous. How can I enjoy myself when Bob is so unhappy? I end up spending most days at the facility. Is the rest of my life going to be like this? - Judy

Making the decision to place a loved one under care is probably one of the hardest decisions a person can ever be asked to make. Once the decision has been made it is also very common to question whether you did the right thing. Going to a support group and hearing this from others may be helpful to you. They can share tips on how they handled their periods of adjustment. The trials of adjustment are not easily grasped by those who have not experienced similar hardship. Your children and other family members may benefit from counseling as well. These are psychologically traumatic events, and we must deal with them as maturely and sensibly as possible.