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Posted: April 10, 2008

Spousal Caregiving

Too Much Care? Too Little Help? Too Tiring!

Bill Andrew

Twenty-four hours a day. Seven days in a week. Sooner or later, you need a break from your caregiving. Everyone does.

Both Betty and Alice are caregivers for their respective husbands but each with a different need. The thing they have in common is that they’re both tired. Let's see what they have to say and how I respond to these reader questions taken from my e-mail bag.

_____

Betty writes:

Dear Bill:

I would love to have a couple of hours each week for myself. We have not been able to get any help. The State of Texas apparently provides minimal support for respite care and you are placed on a priority list. Thus far, our name has not come up.

My husband is a lung cancer survivor (cancer free now) and is on oxygen 24/7. He also has heart problems which complicate the situation. But no help is forthcoming.

Any advice that you can give me would be appreciated. Thank you.

Betty W., Mercedes, Texas

Dear Betty:

Thank you for your inquiry. Respite care for spousal caregivers -- in fact, for all family caregivers -- is crucial to the well-being of the caregiver (and the care recipient!). If you get burned out, or can not provide care because of your personal illness, who will take care of your husband?

If I were you, I would continue to pursue sources of respite care as I did until I finally got what I needed. Your perseverance will reward you in the end.

Specifically, I would check with your county elderly services department to see what they can provide for you -- perhaps respite care, perhaps adult day care, perhaps some other available resources. Nursing facilities in your area may also provide such services -- although the cost may be higher. You may find other sources of support through your church, friends, family -- if only for a few hours a week, so that you can get some time for yourself to "recharge your batteries." Perhaps your area has a Faith in Action group that provides free support for caregivers.

If all else fails, pray. I mean that. Take time out from your caregiving activities and spend a few minutes in prayer. I have found that my prayers have resulted in my finding sources of solace and respite even when I have to spend 24/7 with my wife on days when I don't have respite support. It has been said that "when the going gets tough, the tough get going." Prayer has helped me to personally be "tough" and "get going" once again when I need to. God bless you and your husband as you travel this caregiving journey.

_____

Alice writes:

Dear Bill:

Am I too caring? My husband, who is 80 years old, seems to be more demanding of my care and attention every day. He seems to want to do less for himself all the time. I have been afraid to push him too much into being more self-sufficient because he has some pretty serious surgery coming up. He has been ill from gall stones (gall bladder removal) and as a result has held back surgery that will open more arteries and insert stents.

He wants me to bathe and shave him as well as help him to dress. He complains that everything he does hurts his back. He also has COPD (chronic obstructive pulmonary disease: chronic bronchitis and emphysema).

Due to these physical problems, I have probably spoiled him. He is now pretty well recovered from the gall bladder removal but had gone through a period of barely eating food and drinking fluids. I have him eating and drinking once again.

However, he always wants something that we don't have in the house. Or, if I make something that he wants, he only takes a couple of bites and refuses the rest. I have been wondering if this is indicative of Alzheimer's disease or a related dementia. Any suggestions that you can provide would be appreciated. Thanks for listening.

Alice H, Mineral Point, Missouri

Dear Alice:

Although you didn't say, it sounds like you are a 24/7 caregiver for your husband. Given his condition, I would hope that you are getting some help from family, friends, or other sources. As you indicated, you have probably spoiled him with all of the attention and now he expects it even though he is now better than he was before.

You also asked, "Am I too caring?" As a 24/7 spousal caregiver myself, I don't think that you are, or can be, "too caring" -- I think that you are doing the right thing by your marriage vows.

Your personal attention to your husband's needs -- and demands -- means that you probably don't have much time for yourself. You need to find some respite support before you find yourself "burned out" because of all of your caregiver activities. Have you tried to get that respite support? Will your husband tolerate someone else doing what you are doing? What does your doctor suggest? I would urge you to check out various sources of respite support at your earliest opportunity. The stress and strain of caregiving can lead to indications of depression -- which will not be good for you or your husband.

Regarding your question about Alzheimer's disease or a related dementia, there is always that possibility given the gall bladder surgery and heart problems. There are over 200 forms of dementia -- of which Alzheimer's is the most prevalent -- and one of those dementias (many of them treatable) may be the cause of some of your husband's behavior problems. For example, surgery implies anesthesia, and that alone could induce dementia-like symptoms -- as could some of your husband's medications. I would check with your husband's doctor regarding these concerns.

I hope that the above provides you with the suggestions you were seeking. If you are a spiritual person, I would pray about what is happening to you and your husband. God bless you and your husband as you travel this caregiving journey.

_____

Well, that's it for today. Please e-mail me at ASKBill@caregivershome.com with your comments and/or reactions. I will include them in a future column with your permission. Provide your full name and address. In the column, I will only use your first name and the initial of your last name as well as your city and state. Thank you.

WORDS TO CARE BY . . .

"Slow down and enjoy life. It's not only the scenery you miss by going too fast -- you also miss the sense of what you are doing, where you are going, and why."

Eddie Cantor (1892-1964)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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