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MarilynW
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I am trying to educate myself on this subject and wonder if anyone has any advice on the following:
1)Is there a medication/form of treatment which can delay the process?
2)What is the best form of treatment in the early days?
3)Can you share ideas of how to organize the person's home to minimize frustration as memory declines
4)In the early stages when a person when a person realizes this is happening - what advice can you give for coping strategies
6) Can a person stay in their own homes with a spouse (if the spouse is willing and able to take care of them) or does an assisted living facility always become necessary
7) Do you have any books/articles/websites that you can recommend.
Thank you so much for your help
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Marilyn
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stellamaris
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Marilyn, we are also dealing with this with a close relative. First of all, remember that there are many causes of age-related memory loss. Your loved one needs a complete physical examination to rule out treatable conditions. Secondly, there are medications available that can delay the memory loss due to Alzheimer's. There is constant research and development going on, but one I know has been used recently is Aracept, with varying results. The best treatments include medications, healthy diet, and regular exercise, along with avoiding alcohol. This book gives an easy-to-understand explanation and tips for managing the disease. It is written to the patient themselves. The book The 36-Hour Day discusses caregiving for an Alzheimer/dementia famiy member and also has some ideas for simplifying the home to make it easier for everyone.
As far as coping when a loved one realizes this is happening to them, the best I can say is pray for them, and love them. Help them to find joy in the moment, and try not to set them up for embarrassment by asking a lot of detailed questions about recent events. Often times, discussing the distant past (their childhood, for example) can be fun and uplifting for them, because they do remember some of these details. Anger is a real issue at this stage; how frightening it must be to lose your own memory! Looking at pictures of family members is a good way to help them remember who everyone is; we often do this and talk about whatever he can remember about his loved ones.
It is a very difficult path; I find I am sometimes fearful myself, or so sad  to see the loss of the personality of someone so dear to me. I remind myself that we will meet again when we are with the Lord.
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Caroline
Wife to  dh 30+ yrs,ds's 83,85,89,dd's 91,95,ds's 01,01,02,grammy to 4
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MarilynW
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| Posted: Oct 12 2009 at 7:04am | IP Logged
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stellamaris wrote:
| It is a very difficult path; I find I am sometimes fearful myself, or so sad to see the loss of the personality of someone so dear to me. I remind myself that we will meet again when we are with the Lord. |
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Thank you so much Caroline. I have ordered the 36 hour day for my relative's spouse. What you say is above is so true - it is very very heartbreaking, so hard to explain to children and even worse when one is dealing with it from a distance.
It has also made me start thinking about our views on elder care. The children and I have started visiting a local assisted living facility - the children play violin/clarinet/piano and we visit - I find it so heartbreaking to see the loneliness of the people there.
I am also trying to figure out how when we have large families of our own, we can manage elder care.
Thank you again.
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Marilyn
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Bethany
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Marilyn,
This is so very hard . I had this happen with both my grandmother and a great-uncle.
My grandmother was just assumed to have Alzheimers, where my great-uncle was a confirmed diagnosis. My mother was present when my great-uncle passed away and she learned many things from the staff at the alzheimers facility that led her to believe my grandmother did not have alzheimers.
My grandmother really suffered from dementia and memory loss, I believe, due to stong pain medications and demerol. She had many health problems that caused her to have surgeries, severe back pain, and finally throat cancer (she wasn't a smoker). Her demetia started in about 1990. It became very obvious when they came for my HS graduation in 1992 (they lived in Phoenix and we lived in Arkansas) and she was very dioriented and "lost" being out of her home. Three years later when I graduated from college and my brother graduated from HS they were unable to come because she just ccouldn't leave her house. I moved out to AZ about a year later and was around them more, but she began calling me by other names and I was her only grandaughter. It only continued to get worse and finally she went into a nursing home back in Arkansas near my parents in 1998 and passed away in 2000.
She stayed in her own home much to long for many, many reasons. My grandfather finally hired someone to watch her while he ran errands and shopped, but her mental state was so bad at that point she was aggressive and violent with the worker and no one would stay with her. I truly believe they would have been better off to move to an assisted living facility much sooner. It would have freed my grandfather from worrying about shopping and preparing food and keeping house. He would have also had assistance in her personal care. Instead, it had to get horrible before he would allow her to be taken care of. One day my parents called me and asked me to go by their house because my grandfater said he couldn't get her out of bed. He would never ask for help. I went there and had to call and tell them they had to come because something had to be done. They flew to Phoenix, she was hospitalized and they were finally able to medically transport her to Arkansas. My grandfather sold their house and moved in with my parents. Her condition those final couple of years was not good.
My great uncle did have alzheimers and lived at home for many years. My aunt finally had him placed in an Alzheimer facility not to long before he passed away. His death was much quicker than my grandmothers.
My concerns would be to get whatever assistance or changes in place earlier rather than later. My grandfather and father waited much to long with my grandmother. Also, I think it's hard to know how a person will be when those changes happen. My grandmother had some aggressive behavior but my great uncle never did.
I know many people hate the idea of assisted living or nursing homes, but I don't know that everyone has the ability or means to care for someone in their home. There were several years where my grandmother couldn't go to the restroom or even get out of bed even with assistance. She also couldn't feed herself for several years. Whereas, my great uncle was in that condition for only a few months.
I don't tell you all this to make it sound horrible. I think my grandfather and father made some decisions that I wouldn't have made. I think if they had made other decisions, the years they had left together might have been better. He could have focused on spending time with her and not shopping, cleaning, cooking and paying bills. It's difficult and I can see that no matter what decisions are made, you will always question them.
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Bethany
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JodieLyn
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A friend who's done a lot of research into sulfation levels says that epsom salt baths (or even just a foot bath) may help delay alz. The epsom salt baths (1-4 cups starting lower and building to the higher end) raise sulfation levels and help the body fuction better.. be able to use nutrients, fight disease etc.. lots of stuff.
And it's something you can do for anyone.
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Jodie, wife to Dave
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-Sir Walter Scott
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MarilynW
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Bethany - thank you for your perspective. I always think about that movie the Notebook when the husband was able to spend quality time with this wife rather than struggling with the day to day care. Thanks again.
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Marilyn
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guitarnan
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Another thing to consider is to find an assisted living facility that has care available for all stages of Alzheimer's. The last thing you want to do is move your loved one *again* later in the Alzheimer's process - he or she will have grown used to the way things work in the first facility, and the change to another new home and routine can be devastating.
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Tami
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Marilyn, I am so sorry to hear this. I know it is a hard diagnosis to hear and give to someone you love.
We lived with a friend for 2 years and cared for her, prior to our move out west. As a matter of fact, it was the need to change her living situation that resulted in our moving.
She has early-onset Alz (diagnosed in her late 50's - she's now 66). Her twin sister has it, although not as severe. One of her younger brothers has it much worse.
I second the recommendation to read The 36-Hour Day. It is a very good and practical book. Also, it's good to know if you're dealing with Alzheimer's or dementia. They are different conditions, with different symptoms, although the treatments are very similar.
To answer your questions:
1. Meds - In this country, the standard protocol is Namenda or Aricept or frequently, both taken together. They are started one at a time, however, in order to monitor for tolerance. Our friend Marta did have problems with sleep issues and hearing voices for a few months when she began Namenda, but that eventually stopped.
Effectiveness? Well, the standard of care is to prescribe and treat early. The medications did stop Marta from frequently repeating herself (I mean giving me the same information numerous times in a 20-min time period), but I felt that they made her more withdrawn. And I did not see any improvement in her speech - she still struggeled to find words, complete sentences, etc.
2. Best treatment in early days? Like I said above, it is medication, in the hope that it will slow the process. Marta was receiving inconsistent medical care until we moved in. Would her progress have been slower if she were treated earlier? I don't know.
3. Organizing the home - Keep the environment as consistent as it has been. The oldest patterns of behaviour will be the ones retained, although not at the same level of efficiency or effectiveness. Marta loved to wash dishes by hand, but didn't realize she was washing in cold water and that the dishes were still dirty when she put them away. However, the patient will put things in odd places and forget where they are!
4. Coping strategies - The patient will only realize what is happening in moments - it will not likely be continuous thought. One dr. told me she would not use the word "Alzheimer's" with a patient directly (she preferred the term 'memory loss'), because it essentially meant saying he/she would end up as a vegetable. On the other hand, she would never lie if a patient asked directly. Personally, I found the gentler approach to be kinder.
6. Staying in own home. Yes, it is possible, as long as the spouse is capable of caring for the patient, and has the necessary support as time goes on. Eventually, it will be too difficult to shop, run errands, get a haircut and bring the Alz. afflicted person along. I could take Marta shopping with me for a while or leave her home alone for an hour or so, but eventually I couldn't - she would start to wander too much for me to keep track of her, or would not be safe at home (or get into stuff I didn't want her into).
Additional care will be needed. If that can be arranged in the home, then it is better for the person, the family and for society. Sometimes, however, it's just not feasable. Marta live 1/2 the week with us, and 1/2 with her son, who had her in a day facility F/M, then with his family for the weekend. When his wife became pregnant with their 2nd child, she insisted that Marta be out of their home completely (and I fully understand the where this woman was coming from). That meant she would be living in her home (where we were) full-time. That's when we knew it was time to go - there was no way I could handle her all the time, it had been so difficult the 4 days we had her.
Day facilities can be an interim step to full-time care, and provide the at home care-giver a respite as well. Full time living in asssisted care or nursing home would be necessary if the person becomes unsafe consistently in their home, or when their personal needs exceed the ablilty of the spouse (think toileting/bathing issues), if a feeding tube must be managed, and esp. if they become bedbound, and if the family cannot afford round-the clock care. Some families do - Marta's mother had the same disease, and was cared for in her home until her death.
I am very grateful for the opportunity to care for Marta. She was generous to allow us to live in her home when we didn't have a place to go to. She was a wonderful and holy woman, who had cared for her own husband for 25 years in their home. She was such a witness to all of us. While my children struggled at times living with her (she'd reach into their plates for food during dinner, for example) they did say that living with her taught them tolerance. It was a time of growth in compassion for all of us.
By the same token, I likened it to having a 65 year-old toddler in the house, who needed that level of supervision. Schooling the children became very difficult because of always stopping to check on her.
One other thing - we had a chance to have Marta evaluated by one of the country's top specialists in the area of Alzheimer's. Her son kept saying she was in denial about her condition. The dr.'s response: "this is not denial. Alzheimer's patients are insight-impaired." Those words have never left me - they were so profound in describing the effect of the disease on the brain, and the subsequent behaviours.
I know this is long, but I wanted to be thorough. I hope it is helpful. My prayers are with you as you discern the best path for your loved ones. 
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God bless,
Tami
When we are crushed like grapes, we cannot think of the wine we will become. (Nouwen)
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stellamaris
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Marilyn, one more thing we have struggled with here, and that is precisely the issue of getting in help earlier rather than later. If you are dealing with a parent, it can be extremely difficult to convince one or both of your parents that they need help, assisted living or a live-in aide of some kind. Just like us, they do not always want to give up their privacy and independence. The caregiver feels this is their responsibility to their spouse and they want to be able to give all the needed assistance themselves, but, of course, they are not too young, either, and can end up depressed, burnt out, or sick. We have really had a tough time with this-trying to balance respecting our relatives wishes with insisting that they get the necessary care. Can't say we've been too successful. 
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Caroline
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stellamaris
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One other thing that happened here was that the caregiver thought the patient could handle their own medication. Big mistake! All the meds had been poured out of their original containers and put back in other containers. Finally, when we realized what was happening, we purchased a locking medicine box, sorted the medicines so the caregiver (who was totally overwhelmed but refusing help) could just give one set in the morning with breakfast (we had to work out this with the doctor, but we felt there was no way that the medications would be correctly dosed out more than once a day) and so that the patient couldn't open the box and mess with the medicine. This is the kind of thing that goes on, especially when the patient and caregiver have trouble accepting help.
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Caroline
Wife to dh 30+ yrs,ds's 83,85,89,dd's 91,95,ds's 01,01,02,grammy to 4
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MarilynW
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Tami - thank you for your very informative post
I really appreciate all your help.
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Marilyn
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MarilynW
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Caroline - thank you again for the additional information.
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Marilyn
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4Real Forums : Tea and Conversation
Topic: Questions about memory loss/Alz
