My mom has severe dementia but lately seems to be deteriorating very quickly. Her behavior is changing, doesn't want to eat, got up at 3am the other day got dressed and was headed out when the caregiver heard her. Nothing she says makes sense anymore, seems she is living in the past. I think it might be time to find a facility that can help her but I don't want to separate my parents yet. She requires more help than ever, toileting, bathing etc,. I have been giving her a shower because the full time caregiver is a man but when the relief comes in ( a women ) she takes care of showering both my parents. I have to make changes and am going to have a woman come in full time. I feel really bad because the male caregiver has been good but I can not go on like this, it isn't fair to my parents or to me. I am finding it harder to keep up with all of the responsibility, am overwhelmed and suffer from chronic pain. I can tell depression is setting in and feel like I am on a downward spiral. I have to do something before this gets out of control. I wish my 2 sisters would help but they won't, they use the excuse that they live out of state and this is all of my responsibility because I live here. I have a lot of resentment and anger that I am trying to work through but I am not getting very far. This has taken a toll on my marriage also. I am not emotionally available and I hate that. I feel so needy and dependent on my husband and I feel so guilty about that also. Please, any suggestions? I don't want to put my parents in a home but I don't want to lose my marriage or myself for that matter. I want to do the right thing for everyone and feel selfish for thinking about my own needs. I put off things I need to do for my own health to take care of my parents and am afraid that one day soon I will be the one needing help. So please, how do you really know when it is time to take your parents from their home of over 20 years and place them somewhere because of their needs and because it has become too much for me to handle anymore?
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There are now tests that can identify AD fairly conclusively. And my husband just had a brain scan (DaTScan) that may soon be useful in identifying LBD. Great strides are being made in research. There is a drug currently close to completing its testing that is apparently effective in AD. There are several drugs that work with the symptoms of LBD, though none yet for the cure or prevention. My husband is donating his brain (when he is done with it!) for this kind of research. The research is going on world-wide. We know it will be of limited use in my husband's lifetime, but we are confident it will benefit our children and their children.
So far, you pretty well have to see a dementia specialist -- and maybe even a specialist in the particular kind of dementia -- to benefit from advances in knowledge. As RockHardPlace says, few GPs or Internists can deal effectively with these disease.
But ... that is all background. Your real issue is practical and in the here-and-now. Maybe for a while yet you can get along with adjusting the in-home care services. Having someone who can help Mom with bathing, for example. (BTW, you could keep the current caregiver, and just add a "bath lady" to come once or twice a week just for that task. There are people who do that for a living and are good at it!) It sounds like another change that would be needed is more respite care, so that you can get away from the situation regularly. This is NOT OPTIONAL. You can't take good care of anyone if you are a wreck yourself.
Do your parents have a case manager or a social worker to whom you can turn for advice on in-home services? I find that invaluable.
So maybe you can extend the length of time your parents can remain together in their home. But realize that dementia (whatever kind it is) is progressive. Eventually it is very likely that the kind of care needed cannot be provided by a single individual (or a few indiviauls in shifts) in a private home. I have promised my husband that I will always see that he has the best care possible and I will always be his advocate. I have not promised him that I will always keep him home, because that may not always be best for him.
Doing the right thing for everyone is very, very hard. And there are built-in conflicts. Doing the right thing for your mother and for your husband and for yourself may be three different things, and you can't do them all at once! The stress and distress you are feeling is normal, but you do need to find a way to handle it before it overpowers you.
I suggest joining a local caregiver's group -- if at all possible, a group for caregivers of person's with dementia. This can provide practical tips, like how to get your mother's baths handled, as well as awesome emotional support. It is so great to see you are not alone and that other people struggle with these hard decisions, too.
Also, get yourself some counselling or therapy. Not because there is something wrong with you and you need to be fixed, but that you are in a very stressful situation and you deserve help and support. Having your husband join you for a few sessions might be useful, too.
Try various adjustments to provide care at home a while longer. Start investigating what is available if/when placement is needed. Start the process of looking at how this can be financed. Are your parents on Medicaid now? They may need to be. If you keep the goal firmly in mind of the best possible care for your beloved parents that will help guide you regarding when placement will be needed.
About your sisters: I wouldn't waste a lot of energy on resentment or anger. You have so many more matters that need your energy. Think back to before you became a caregiver. Could you possibly have understood what that role would mean, before you stepped into it? I know that I couldn't have! So your sisters are acting partly out of ignorance. How can they know what your life is truly like? Caregiving long distance IS hard, and they probably don't know what they can do. Tell them. You need someone to come and stay with the parents for one week in August, while you and Hubby take vacation. Neither can do it? Hmm ... let them know what Respite Care will cost for one week. Can they pitch in and each pay half? Ask them for help with things that can be researched online or handled over the phone. Could one of them take charge of the Medicaid application? Don't give up on them until you've given them specific opportunities to help. But don't invest a lot of your emotional life in their responses. If you were an only child you'd get through this, and you will with or without their help.
Hugs and sincere best wishes!
At first I kept up on all the news articles on it and talked to the doctor about prescribing all the new drugs that came out, hoping she would improve, but the decline was steady, and much faster after the long evacuations after Katrina and Gustav. Changes in environment make them worse.
Caregivers go through post traumatic stress disorder. I admire the people who can compare it to taking care of a 2 year old, and remain cheerful and loving. I couldn't do that. A 2 year old doesn't produce pounds of feces and cups of urine, doesn't weigh 130 or more pounds, can be physically restrained in a crib, can be disciplined or trained and has enough rationality to learn and not to do dangerous things. You can tell a 2 year old to be quiet; with Alzheimers they think they are asking the question for the first time, not the tenth. You also know that in months and years the 2 year old behavior will end and you will have a rational person to deal with. There is no end to the Alzheimer's behavior except it worsens until death. I never did reconcile that the body was my mothers but her mind and personality died years before her body did. Nancy Reagan nailed it when she called it The Long Good-Bye. When someone dies, as hard as it is, you know they're gone. With Alzheimers they're gone but you still have the reminder of what they used to be in front of you, and I think that conflict is what leads to the PTSD. You can try counseling, it helps to talk to someone, but in the end, it doesn't change anything.
One of the most helpful books I read was "The 36-hour Day". Thank god for that book. It tells you all you need to know about the disease. It was also helpful for me to hire a geriatric social worker for an hour, who gave me a list of all the resources in the community that I eventually made use of.
Family doctors simply don't understand enough about what Alzhiemers is. They don't do long term testing to have a baseline for cognitive decline of their patients (I think every family doctor should give every patient over 60 the MMSA (Mini-Mental State Assessment) once a year, but most have never even heard of it. My mother's doctor had no clue she had Alzheimers even when I called him and told him she was having memory problems and asked him to check on it. It would have taken him 10 minutes to give her the MMSA, and I would have known definitively, 3 years earlier that there was a developing problem. Most children are also in denial about parents getting dementia (as I was). If you live near them and see them daily you grow used to it and don't see it as abnormal. If you live far away they are superb at learning how to give the right response from your tone of voice and unless you are actually there on a daily basis, you don't understand how much decline there is.
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