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Alzheimer's caregiving makes me feel like I'm losing my mind, how can I avoid a total break down?

Lori43 asked...

I want to voice how I feel. I cannot think anymore. I take care of my dad,I have for 6 years, probably most my parents lifes I was there when they needed me. I Have several sisters and a brother, daughters, sons, grandchildren, and many neices and nephews. My dad now has a large family of children, grandchildren greatgrandschildren and his own siblings etc etc. HE lives in my home for the past 7 months. WHen that happened, of course all that love him will come to visit him, I knew this would be part of it. But it also has brought the thugs of the family, the addicts, the conns, the ex-inmates, all whom my dad dearly loves. He is a perfect example of Jesus and his instruction to forgive and love the unloveable. BUT, i have family, ones I dont trust and did not want in my home. I am being overun. My house is no longer my own, It's a ZOO!! I cannot keep groceriess,I have no place to go for quiet, unless I lock myself in my bedrm. and then its minimal time because of caring for dad. They pile in, they plan cookouts on my back deck, My electric bill is sky high from just the use of dads equipment alone (24-7), the dryer never stops, the stove does not stop cooking, people are everywhere 24-7, Then add the hospice nurses and aids and chaplains. I am going to lose my MIND!! I am so tired, depressed, stressed out, having chest pain, i could go on and on, I dont feel i can change things because My dad wants to see them , He's with Hospice and his time may be 3 months or so. I cant tell them not to come see Him in his last days. My husband and i are suffering greatly and i dont know what to do. He doesnt have but a few months and i am trying to keep him home which is his wishes. But each day i wake feeling ia m going to have a breakdown and want to cry to even get out of bed. I want to scream to everyone GET OUT!!!!! I am sorry for typing so much but i need advice and i thank anyone who offers it with all my heart. God bless all of you and thank you

Expert Answer

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

Dear Over the Edge:

While I applaud you for your wonderful care of your dad, I'm sorry to hear of the stress that the demands of his care, and those of your family have put on you and your husband.

It's apparent that you're at the end of your rope. There are only a few choices open to you, because while your dad may have been told by his doctor or hospice that he has only 3-months to live, I don't think that decision is up to them. It's in the hands of God, and He may not be ready for your dad just yet, and may allow your dad to live for many more months.

Based on that assumption, I'm going to give you some suggestions, one or two of which are very "tough love" approaches to solving your problem.

Here are your choices as I see them:

  1. I'm going to assume that you have tried to reason with your family and they have ignored your requests. You might consider talking to your dad's doctor and asking him to give a written order limiting the number of people allowed to visit your dad. Ask the doctor to "suggest" that one day a week is the maximum number of days of stress he wants put on your dad by visiting guests. You can then inform all of these visitors that the doctor has reduced visiting days and hours and they are now as follows "“ indicating what days and times you'll allow people into your home - rules established by you.

  2. After talking this over with your dad, hopefully you'll convince him of how stressful things have been. Be sure to tell him, don't ask you him, that you need his support. If he will not back your decision, you might want to talk with hospice. Ask if your father can be transferred to a hospice bed in a facility because he has been determined to be imminent to pass away, and you can no longer care for him in your home. Failing that, you may want to move him to a facility where others can provide him with full time care, since you've reached your limit.

  3. You can continue to put up with things as they are, but I'll caution you that your health, both mental and physical may be in jeopardy, based on the demands being put upon you by your dad and the many visitors, guests and family members who don't seem to respect you or your home.

  4. You can talk with your husband and agree to set some rules and guidelines for visitation in your home by anyone, family or friends of your dad. Once you both agree that you're going to retake control of your life and your home, you must have a talk with your father to explain that the way things have been going are making you ill, and you're no longer willing or able to put up with unlimited or unannounced visiting hours from anyone.

After doing that, send a letter or email followed up by a telephone call to everyone who has been violating your home, time and life and let them know that you have established visiting hours and visiting days for your dad to be seen. Inform them that you will no longer be operating as a restaurant, bar, hotel or rest stop, and visits will be limited and controlled. If there are some "characters" that you don't want in your home, tell them that they may telephone your dad, but visiting privileges for them have just been revoked - by you. It's your house and your rules, not your dad's!

You might even write up a list of visiting rules, just like they do at a hospital, and give everyone a copy of the rules when they show up, and possibly post the rules on your front door for the first week or two. Limit the days, hours and number of visitors that may come to your home at any one time. Require reservations if there are too many possible visitors, and don't be afraid to turn people away if they just drop by unannounced.

You have the right to your privacy,peace and quiet, and people have to learn to respect your rights. This may sound crazy, but if you want to retake control of your life, you have to stand up to the people who have been violating your space and disrespecting your time and home.

I would also consider putting a padlock on the refrigerator, unplugging the washer & dryer, denying shower or guest room privileges and refusing to feed anyone anything other than a glass of water if that's what it takes to make it perfectly clear that the days of using you as a maid and your home as a rec-center are over. People have been running over you, and it's up to you and your husband to put a stop to it.

If you have any allies among your friends and family members, recruit them during the first week or two to help you enforce the rules. If there are friends or family who won't cooperate, you are within your rights to call the police to help you get people who refuse to leave your home out of your home and off your property.

I would consider contacting the police even before you begin this approach to discuss with them your problem and ask them what they can and are willing to do to assist you if necessary. Remember, you're about to tell your family that effective immediately, the "party" is over when you say it's over, and anyone who won't abide by house rules is subject to being forced to leave or refused entry.

The bottom line here is that if you don't stand up to protect your home and health, you may become the first victim of your dad's terminal illness. Your best hope is that your dad will support your efforts and ask that visitation be reduced and controlled because it's just overwhelming for him and for you.

You may not win any popularity contests with your family or your dad's friends who see no problem with running roughshod over you in your own home. But by taking charge of your life, you'll regain your self-respect and the control of your own home. Good luck.