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Alzheimer's Care: How Do You Know When It's Time?

by Gina Roberts-Grey

Assessing the needs of a loved one in any stage of Alzheimer's can be incredibly difficult and painful. Many family caregivers liken it to being a first-time parent who senses something amiss with a newborn, but lacks the experience to know exactly when to seek medical intervention. And when symptoms are sporadic, as in the case of neurological disease, medical decisions may present an even greater challenge. These sporadic symptoms, say experts, can leave family members affected by Alzheimer's feeling confused and exhausted.

When the Time Comes
"It is time to consider getting help to care for a person with Alzheimer's when there are changes in mood, behavior, appearance, functioning, or health status that are unmanageable without help and that place the person or others at risk, because these changes can result in many serious events," says Claudia Fine, LCSW, MPH, CMC, executive vice president and chief professional officer for SeniorBridge, a complex care management program in New York City.

One reason for delaying care is the desire to avoid disrupting the lifestyle of a person with Alzheimer's. But, says Fine, this theory can backfire. "A senior who needs Alzheimer's Care but doesn't have it may experience significant weight loss because he can no longer shop or cook," she says, adding that the person might not be able to manage medications, pay bills, or keep appointments. "And, there can be life-threatening risks related to driving with cognitive and sensory impairments, or taking too little or too much medication, or forgetting to turn off a stove."

When Gary Baker's mother went from early- to late-stage Alzheimer's almost overnight after suffering a hip fracture, his family quickly realized they needed help caring for her. "My dad had been taking care of my mom at home, but we quickly needed to incorporate about 50 hours of home help, including the nanny who helped with my children for many years, another aide, daily nurse visits, and family members," says Baker.

Expense is another factor in determining when and what level of Alzheimer's Care is needed. "We've found Home Care that comes close to being 24/7 isn't just more comfortable for my mother, it's less expensive than a nursing home would be," says Baker.

Degrees of Care
Fine says it is very important to select the right level of care for the situation, while anticipating the progression of the disease "A person with early dementia who recognizes his or her deficits might be able to remain in their home and community with family support, care management, and Home Care," she says. "But if the individual is resistant to accepting support, the situation might unfortunately have to worsen before a significant change can be made."

Keeping in mind that Alzheimer's patients require the same kind of care as any patient with a progressive, deteriorating illness, and they also need help with all activities of daily living, intervention should match the level of need and be introduced gradually. "This is often easier to accomplish in a home setting," Fine says.

Baker knows that someday, his mother might no longer be able to remain at home. "But, while she can walk and talk and somewhat respond to basic directions necessary to care for her, we'll stick with home care to help her maintain as much of her old life as we can," he says.

"Although she may not know she's lived in this apartment for more than 30 years," he says, "when she holds our hands and looks us in the eyes, she knows she's with someone who loves and cares about her."

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I am my husband's caregiver. Alz since '07. My children are pressing me to find a place for him. His moods and periods of anger have changed. I can't get him to bathe. I give him a meal and he doesn't remember even eating and then later wants more. My question is, can his doctor advise me and tell me what stage he is in? All of our asests are in both our names.
by Brenda Pryor submitted on Nov 9, 2009

Yes, your doctor can advise you of this. You can also ask for a home care assessment. You should also look into getting a personal directive, which will allow you to make decisions for your husband when he is no longer able to do so. Start getting home care for him ASAP and put his name on waiting lists for care before the need becomes critical.
by Jarrod Thalheimer submitted on Jan 15, 2010

Diagnosed with Early Onset Alzheimer's Disease @ age 49, almost 51. I have two children ages 28 and 20. They have their own families and I refuse to let them be responsible for me. I am newly divorced. My husband was handling all of my affairs. Unfortunately, I no longer can make decisions. I am overwhelmed. I'm not sure if I should move into an apartment with home health care or assisted living. I've been staying with a girlfriend. Frankly, I can no longer deal with stress or loud noises. I'm not sure where to turn. Should I obtain an attorney that can handle my legal and financial affairs?
by Mary Pletka submitted on Mar 14, 2010

Would appreciate some advice. My mom is 82 in June and has dementia that, so far, only affects her ability to remember appointments, phone conversations, etc. Her cognitive abilities are weakening daily and we've started looking for alternative living (she's currently in an independent high rise in the neighborhood where she grew up and with people that she likes). I am STUNNED at the expense of anywhere with services beyond independent living. I realize that I must seem naive, but it's not like this topic is well-publicized. How does anyone afford to pay $5,000 a month or more? Mom has $1,000 in social security and about $70k in savings. That wouldn't last her two years! While my brother and I will try to raise another $1,00 per month, that still leaves us FAR short of what we'd need. Has anyone out there found a reasonable alternative to these exorbitant charges? By the way, the building she lives in will not allow full time home health care as it's a subsidized independent living building. She will have to leave when her condition becomes obvious. Please drop me a line if you have any advice: lkleyrer@yahoo.com
by Laura Leyrer submitted on Apr 6, 2010

Hi Laura--I know EXACTLY how you feel--I am too AMAZED at how much the care is. We recently sold my Mom's home and now she is living with us, but she really needs to be in a place that deals with Alzheimer's but we CAN'T afford it!!! I do have a caregiver which comes in 8 hrs. a day-$2250/month and then I take over at night....that's an idea.
by Nicki Brooks submitted on Apr 13, 2010

I am a 41 y/o married female with 4 children ages 21, 16, 8, and 7, along with a brand new grandson. My daddy passed away February 7, 2010 and my mothers Alzheimer's has become worse daily. I am a medical professional with knowledge of this horrible disease, however it is different when it is in your life. Mom is 78 y/o and has also been a huge part of my life. I am an only child, my brother was 20 years older and he has passed away. I feel terribly guilty that I am no longer there for all my children all the time like I was. The older two understand and help me tremendously, but I know they miss mom just caring for all of them. I am in the process of deciding what to do. I have up and left a 5 y/o home that my husband and I worked our butts off to get, just to move in with mom and care for her. I am still working 40+hours a week and my daughter, the 21 y/o with the new baby, takes care of mom during the day. Maybe I am selfish, but I do not want anyone coming in now or at a later date and making me sell my parents home, that has always been my family's "home" too. I agree with the expense of care, it is stunning. What happens when Alzheimer's affects all the baby boomers? It is a scary thought. I feel for each and every human being that has to endure this horrible mind boggling disease. It really does not effect the person, it affects the family. I am my mom's only daughter, now only child and half the time she thinks I am her mother or her sister. She wanders everywhere, a few weeks ago she was in one of the neighbor's houses, this was a new neighbor that we do not know. What do you do? When is the time the right time? When will I ever not feel guilty, because she has ALWAYS been there for me and my family?
by Stacy Rhodes submitted on Apr 13, 2010

My brother and me (with our families) are at the end of the rope. Is this the time to move my mother (91 yrs old) to an assisted living? She has been living in a home that we own. She has only $700/month coming in. We have had 24 hour caregivers with her, but the last one had to leave because of personal reasons. My mother is demanding, outright nasty with anyone that lives there. To a point that she will take the caregiver's clothes and throw them in the garage. Tells her to go to her room and not to come out until SHE tells her to. It is outright hurtful to the caretaker and shameful to us. This last caretaker is, as we speak, is leavig the house now. We are at the end of our rope. PLEASE, what do we do? We are willing to pay whatever right now. We need advice soon. I pray that God guides us in what we need to do...
by Lea Sober submitted on Apr 20, 2010

My wife Imogene has suffered with Alxheimer's for several years (since 1998). I have home life care and home care twice a week. Jeannie is still mobile, and she spends her days at the Local Senior Center, where they attempt to exercise her Mind with Games, etc. and it has been a great help. I think it's about that time when I will have to determine if I can afford an assisted living center for her, but have you seen the prices they want for this care? It is beyond the means of a retired Navy Chief Petty Officer's pay. Most assisted living centers I've reviewed are more than I can afford, on Chief's monthly pay. All of the living communities want my income, savings, my insurance, my investments and any other monies I have to accept my wife as a patient. These units should be controlled by the U.S. Government W.P. Longmire STC USN, Retired
by Wallace Longmire submitted on Apr 25, 2010

Thanks so much for utilizing our forum to seek advice and assistance. I encourage you to utilize our directory of senior living providers, however, because most of them are private pay, if monthly budget requirements are a concern, you may wish to explore the United Way 211 or search your county or state department of senior services for help with affordable housing.
by Gina LaGuardia submitted on Apr 26, 2010

I have read with great interest the postings on this site. It helps enormously to know there are others going through this extremely difficult time - not that I would wish this on anyone. I find that unless others have not experienced the world around an Alzheimer's patient, they have absolutely no idea what living with this disease is like. My biggest dilemma currently is dealing with my mothers inability to understand why she can't live at home any longer. All she wants is to remain at home, a home that in her mind is the center of her world. Realistically however, when she is home is is socially isolated and remains in bed until noon and never changes into day time clothes. She just watches TV and is very negative about all aspects of her life. I love my mum very much and it is breaking my heart to see her deteriorate. The fallout of our moving her to an independent retirement home was huge. She is so angry with us, but she does not comprehend the level of care she requires. On the financial side, yes, the expense of extended are is not affordable for the average retiree. To help finance the retirement home, we are considering rental my mother’s home. Together with her pension, it will just cover the cost. This leaves no additional money for extras. Certainly the government needs to step in as this disease affects more people as the baby boomers age. The guilt is killing me, I feel I have let my mother down. Although I have done absolutely everything to keep my mother at home for the last 5 years - and paid the price, since it affected my relationship with other family members, work and compromised my own heath and emotional state.
by Debbie George submitted on Jun 6, 2010

I have read with great interest the postings on this site. It helps enormously to know there are others going through this extremely difficult time - not that I would wish this on anyone. I find that unless others have not experienced the world around an Alzheimer's patient, they have absolutely no idea what living with this disease is like. My biggest dilemma currently is dealing with my mothers inability to understand why she can't live at home any longer. All she wants is to remain at home, a home that in her mind is the center of her world. Realistically however, when she is home is is socially isolated and remains in bed until noon and never changes into day time clothes. She just watches TV and is very negative about all aspects of her life. I love my mum very much and it is breaking my heart to see her deteriorate. The fallout of our moving her to an independent retirement home was huge. She is so angry with us, but she does not comprehend the level of care she requires. On the financial side, yes, the expense of extended are is not affordable for the average retiree. To help finance the retirement home, we are considering rental my mother’s home. Together with her pension, it will just cover the cost. This leaves no additional money for extras. Certainly the government needs to step in as this disease affects more people as the baby boomers age. The guilt is killing me, I feel I have let my mother down. Although I have done absolutely everything to keep my mother at home for the last 5 years - and paid the price, since it affected my relationship with other family members, work and compromised my own heath and emotional state.
by Debbie George submitted on Jun 6, 2010

Reading the postings on this site has helped me as well to know that I am not alone in this. I am the lone caretaker of my mother, 72, who has had Alzheimers for the past 5 years or so. My dad passed away in July and until I moved in, I never realized what a task he had to endure. They were married for 53 years. Since then she is worse than ever. I am feeling so guilty about making decisions for her. She does not want to move, and wants me out of the house so she can be alone. I have to make some real hard decisions on her behalf. She is depressed at her home because she refuses to remove or move any of my dad's personal effects. Everything is as if the world is standing still. I lost about 30 pounds already and look like I am the sick one. Doctors won't give me answers and won't cooperate when I needed to become her guardian. I have to constantly find ways of going around the system to get things done. I am so frustrated and feel guilty when I get someone to sit with her while I run errands for only 2 to 3 hours a day. Usually the person leaves before I return and all my mom does is complain that she don't want anyone at her home. I was so hurt this weekend, that I know I would have felt better if someone would have just shot me. I love her so much but she is telling everyone in the world she don't want me here. I am so hurt, but will continue to help her anyway. I have a very understanding husband, my own home and two small children left at home. We are giving up everything to take in her and my mentally disabled brother to a bigger home. She is going to be so angry but my brother is excited. Any suggestions?
by L. R. submitted on Sep 1, 2010

To Debbie George - your story is my story. My husband and I just moved my mother-in-law to an assisted living facility. She was diagnosed with onset of Alzheimers one year ago. We let her stay in her home as long as we could (my nephew was staying with her). Feeling horrible guilt and constant second guessing - should we have waiting? When is the right time? How long to you wait? She only has my husband and myself, both working full time paycheck to paycheck. Taking care of her was not an option. The phone calls became unbareable (7 times a day) asking the same thing. Forgetting how to work appliances. 3 "sundowners" episodes - not know where she was or what to do next. How do you ever know if you did the right thing or if you did it too soon. She wanted to die in her own home. She is angry and not adjusting to her new place. We did what we thought was best with the savings she had. Trying to make her money last the longest. Even today I'm afraid she will not adjust and insist on coming home, which is not an option. We have leased it to help pay for her care. Any advice or suggestions are welcome. They are right that this is harder on the family than the one with the disease.
by Diana Chambers submitted on Sep 28, 2010

My mother-in-law is the one I wrote about in an alzheimers care unit that was allowed to keep her dog but we were told the dog might not be able to stay due to aggressive behavior. Your readers gave great advice like getting a vest that says don't bite etc. Today we were told that the dog HAS to go - someone else complained that it went to the bathroom in the hall. Bottom line - we need to remove the dog which will devastate my mom. I know she will not accept living there if the dog can't stay with her. She has early dementia and may forget who I am, but she never forgets the dog. Do we tell my mom the dog passed away rather than just tell her it can't stay there? It sounds so cruel but grieving is better than grieving and anger. Any advice is welcome.
by Diana Chambers submitted on Nov 12, 2010

My wife was diagnosed with Alzheimer's about two years ago and is progressively getting worse. It's been extremely difficult for me and my daughter who is currently her in-home support care-giver to get her keep her happy and in good health. I am a manager at a full-service hotel, which requires many hours of my time. My daughter comes by Monday thru Friday and picks her Mom up and spends most of the day with her. Unfortunately, my daughter is going to college four days a week and has another part time job in the afternoon. I try to have my wife stay with me in my office or sometimes she manages to sit in the lobby and watch TV. Her moods changes like a light switch. One minute she says okay, then the next minute she gets very angry and says mean things to my daughter and I. We both understand that it's not her fault and try to just ignore her ranting and raving but sometimes it goes beyond that point. My only day off is Saturday and I try to do fun things, such as go to the movies, parks, and even take her shopping. Sundays is the most challenging. I work the whole day at the front desk and my wife has to be with me for the 8 hours I'm working. My most exhausting and frustrating time is every night when we're in our room, she tends to get into her mood where she doesn't want to talk and just ignores me and acts very resentful towards me. She cries almost every night and I sometimes want to do the same. I love my wife dearly. We've been married for 29 years and known each other for 31 years. I'm trying my hardest not to put her away, but sometimes that's exactly what I want to do, but not planning on doing it. How can someone so young, that used to be, a wonderful mom and wife, so active and fun-loving be stricken with such a horrible disease. Any suggestions?
by Jesse Cogal, Sr. submitted on Aug 28, 2011

My mom was diagnosed with Alzheimer's in 2009 at the age of 68. My dad is her primary caregiver and I take care of her in the evening when I get home from work. I also have her all day Saturday and Sunday just so my dad can get a break. We recently tried to bring in home care but my mom is very angry. She is extremely combative and our biggest problem is that she does not recognize her surroundings anymore and is constantly looking to go home. She has wandered on a couple of occasions and now my dad has a bolt on the door to avoid this happening again. She gets so angry screaming, hitting, kicking, spitting in our faces when she gets in a rage because we cannot take her to the home she has in her mind. My dad always said that as long as he is alive she will never go in a nursing facility but we are at the point where we cannot manage her behavior anymore. I feel like such a bad daughter but I don't think we have any other option than to put her in a home. Anyone experiencing anything like this also?
by michelle magid submitted on Jul 4, 2012



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