I am often asked by caregivers “How do I know when it is time?” Is there a sign? If you are asking the question, it usually means it is time. This is a common question I am asked by caregivers. Sometimes the signs are very subtle and other times they are not, and you may have to act quickly. Your loved one is not normally going to tell you that they think they cannot drive anymore and hand you the keys to the car. If they do this, consider yourself very fortunate.
An Alzheimer’s/dementia diagnosis is a terminal diagnosis, and what this means on emotional and practical levels is overwhelming. The fact that your loved one is not going to get better must be dealt with. You have no idea how quickly dementia will progress, so I suggest you handle the legal aspects without delay. Become their advocate by obtaining a Power of Attorney or a Durable Power of Attorney immediately. This can be obtained by most attorneys, but in most cases you should seek an Elder Law Attorney. He or she can advise you on the other important documents that are needed in order to participate in your loved one’s care.
No terminal diagnosis is easy to deal with, but with most other diseases, the victim remains lucid. The loved one can share his (her) feelings and rationally discuss how to get their affairs in order. With Alzheimer’s/dementia, usually your loved one can’t rationally contribute to the necessary decisions about care. This is another reason you should seek an early diagnosis so you can plan together.
With Alzheimer’s/dementia you often carry the burden alone. This is why you should seek peer support and network with others as early as possible. In a group you will share knowledge, but also grief. Look into the Alzheimer’s Family Organization as a resource. Local support groups can be a gift where you will see others dealing with the situations similar to yours.
I have learned that in many cases, care givers are dealing solely with their primary care physician. Some said the only advice they received was, “Put him away immediately,” meaning you should find a nursing home or assisted living community now because you won’t be able to deal with it. I don’t necessarily subscribe to this advice. Every case is different, and you might be able to use home health support for a long time. One thing is very true: eventually you will not be able to handle this alone, and the sooner you come to terms with this, the easier it will be to seek appropriate help when you decide.
Dementia is a complex area of medicine, and our body of knowledge and research is growing rapidly. There are medications available that can reduce anxiety and quell destructive behaviors. It is also good to consult a psychiatrist who specializes in Alzheimer’s and dementia to seek information your primary care physician may not be trained to provide. You may also need to see a neurologist to have the needed tests to determine that it is Alzheimer’s or dementia.
Back to the original question, “How do I know when it is time to turn my loved one over to an assisted living?” There is no pat answer to this, but I believe that your loved one’s behavior will let you know. If he (she) wanders and comes into dangerous situations; if incontinence becomes unmanageable; if he (she) is not sleeping or refuses to let you administer meds; or if your loved one becomes combative; these are the clear signs that it is time to seek help.
A very important thing for all caregivers to remember that is often difficult to do is to be kind to yourself; you must take care of yourself. If you become exhausted and so exasperated that you can no longer respond to your loved one with understanding and full compassion, it is time to get help, not just for him or her but also for you. When you are stretched beyond your patience, energy, and emotional resources, you are beyond providing the care that your loved one deserves.
And, again, seek out a peer group that is knowledgeable, supportive, and positive. If you have friends or relatives who tend to guilt you for not doing enough, gravitate away from them. You definitely don’t need that kind of “help.” Perhaps that relationship can return to normal later.
I am a support group leader of two support groups in Citrus County, and while I may be there to teach or answer questions for the group, I always find that these meetings continue to give me an opportunity to learn.
Thank you to all the caregivers who come to the meetings to help yourself and others manage through their journey of Alzheimer’s and dementia. This is a disease where sharing is the best therapy you can find. It will not make your loved one better, but it will enable you to cope and care with greater skill, and this is certainly beneficial to the person you are taking care of.
Until next time remember: “We all deserve the best”
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© Debbie Selsavage, 2015