| T O P I C R E V I E W |
| Penny Wise |
Posted - Feb 06 2013 : 10:08:52 AM
I have read much and have attended workshops on coping etc--my sweetie is 73 and is showing early signs... last nite we watched "Away from Her" with Julie Christie-it focuses on the spouse's point of view as his wife (Christie-who btw was gorgeous!)
i know that we need to discuss this with his doc--he had first hand knowledge of caring for his own mother the last 6 months of her life when she would throw things at him and say horrid things due to her alz.
i guess what i want to talk about -besides knowing that i am sure there are online support resources! ---is --
****have you had to go thru this ---parent? spouse?
(sweetie is my former husband and is living with me- he is 14 yrs older than i so i look at him as both a parent and a spouse)
**** how have you braoched the topic with the patient? or could you?
****how have you worked full time in addition to the full time care giving needs?
i have been his caregiver for so long now that i truly am feeling just like he is a patient and no longer my loved one.....and i need to work thru that as well. i made the commitment to him when i brought him back after i divorced him- now i could never turn him out - yet- i well- never mind......
please discuss this with me.....hugs and prayers appreciated but stories and tips and tricks and references to info are what i need......
i'm sure that i have many more questions, comments, but am at work and typing fast!
Farmgirl # 2139
proud member of the Farmgirls of the Southwest Henhouse
~*~ counting my pennies; my dreams are adding up!~*~ |
| 9 L A T E S T R E P L I E S (Newest First) |
| laurentany |
Posted - Feb 09 2013 : 5:51:25 PM
Margo,
I dont have direct experience with this dreaded disease, but I just wanted to say that I will keep you and your sweetie in my prayers. I have had friends who have had to go through this with their parents etc, and quite frankly it scares the daylights out of me.
I know that you will come through this in a positive way, because you are taking the bull by the horns, recognizing the need for help and willing to do whatever it takes to help him.
Blessings to you!
Hugs,
~Laurie
"Little Hen House on the Island"
Farmgirl Sister#1403
View my New Blog:
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| rksmith |
Posted - Feb 08 2013 : 4:31:54 PM
Most drug companies have assistance available if you can't afford the medications--I'm not sure what he'd qualify for since he has disability (and I'm assuming medicare?). There is an organization here called MedBank that will help with meds too--you might want to see if there is one where you are that can help out. To help with the depression (most depression meds actually can lead to greater depression since they can cause nutrient depletion in the body) you can get foods that will help boost serotonin levels naturally, this is a good article to read http://www.naturalnews.com/020611_depression_nutrition.html You might want to keep track of what meds he takes and the time he takes them then track when he has lapses. This is tedious but it will help you to figure out if some of this is due to medication. Medication is tricky with older folks due to changes in metabolism and the fact that many elderly people are treated by several different doctors who prescribe different medications that can cause compounded side effects. Also keep in mind with with many older people one of the first sings of a urinary tract infection can show up as dementia--if he has more frequent episodes or changes all of a sudden you might consider having him checked for a urinary tract infection. Definitely do a periodic review of his medications and if he is taking alot of similar meds (for example multiple meds for anxiety, or depression or pain especially) you may want to bring this up with his doctor to see if there is any way that you can make changes to reduce the amounts of these meds that he takes.
Rachel
Farmgirl Sister #2753
True enlightenment is nothing but the nature of one's own self being fully realised-- His Holiness the Dali Lama
www.madameapothecary.com |
| FARMALLChick |
Posted - Feb 07 2013 : 2:20:26 PM
Margo - My experience with dementia/Alz is posted in My hero broke my heart. It is about my grandfather and what we are dealing with trying to get him care. I am so glad you are ready to battle this head on. I am trying, but my mother is getting in the way. I feel like I should have paid more attention to his condition earlier and made changes before now as it is too late for me to do anything. I tried and failed.
My DH and I along with my brother have learned much from this experience and are working on plans for each of us. We are planning on having a family meeting soon with our own dad and discuss things with him for his care should his wife not be able/around to help him or make decisions.
I wish you all the best that things go smoothly in his last stage of life. It won't be easy, but you are doing all the right things. We are here if you need support!
"Courage is being scared to death and saddling up anyway" -John Wayne
www.CountryFriedAcres.etsy.com www.farmallchick.blogspot.com www.farmallchickphotos.blogspot.com |
| Penny Wise |
Posted - Feb 07 2013 : 09:18:08 AM
marianne and rachel !!!!--gosh i love that you -and annie!!!!- have taken the time to write.
i DO hold valid POA 's for both durable healthcare and finances- have had them since he was quite ill in 2005...and they are not subject to lapse of time... i've been checking on that! what i need to do and will this weekend- is write up codicils to both of our wills-9 and they only need to be witnessed by two ppl- can have next door neighbors do that! no notary needed.) our wills were both written when we were married- since we have legally divorced they become null unless we have codicils-we talked about this the other nite and he agreed to it willingly--he knows tha i work with things like that at work so it was easy to bring up the subject without raising questions !!!
sometimes i think his "lapses" are due to stress and meds..(vicodin, atavan)but i am keeping close watch...
i have explored some of the resources in the community here as well as where my employer is moving to in the fall...and the option of us moving closer to there in the summer if needed... also i have some very awesome contacts in the community from previous time when i lived here and current thru family and friends...
i have a wonderful rapport with the elderly community and have patience there that i don't with my peers...my college degree was -repeat was (due to my cancer put on hold) in human services to become a social worker focusing on the elderly and caregivers-not necessarily gerontolgy---so i have studied and try to keep very current...
i had an opportunity to attend a wonderful workshop on grieving the alzheimer's patient - also a greiving thing thru a hospice- and wow- when he was sick in 2005 and 2006 i actually went thru much of the process more than once because it came close to losing him then.
he has two adult kids in texas who love him but will do nothing to help /nor can they...his sister in wisconsin will help as she can...but-she is 500 miles away!so it is me and i know that i may have to rely on daycare etc...
as for my own health--i was so blessed to have almost no side effects from my cancer and am healed quite well as well as all of my follow ups so far have been great- i am hoping to get myself more physically active to help in that respect-(for health as well as mental health!!) right now all we do is i go to work and we sit and watch tv after supper...no life..but it gives us "together time" which he desperately loves...even if we are just in the room together. problem i have is that there are some things that i DO want to do so i tend to catch that tinge of resentment trying to sneak in somedays...
my work is wonderful about family - i just have to be careful cuz we really do need my income- his social security is all he has- and because we live together the Ohio dept of human services hasdenied him financial help with his meds or his supplememntal insurance-- he had that when we were in michigan and ohio previously and when he was in wisconsin--it won't break us but it sure doesn't help us!!!every lil bit helps!!!
it helps having this discussion to see that i am on track and for hints like the carpenter set! love it!!! he was a very handy man before his accident and illnesses and he just sits now...i have tried to get him interested in things and he poo poos them ( he is on strong meds for depression as well).
again, sisters, thank you! i hope others will join in to this as well!
Farmgirl # 2139
proud member of the Farmgirls of the Southwest Henhouse
~*~ counting my pennies; my dreams are adding up!~*~ |
| rksmith |
Posted - Feb 06 2013 : 5:51:24 PM
Alzheimer's is very challenging and down right hard to deal with. I've worked in an Alzheimer's unit and my grandmother had it--I helped my mom take care of her. It will get to the point that he will require 24/7 monitoring for his own safety. It is hard to even consider that concept for most people and many don't understand just what that means. Someone will have to be present all the time to keep an eye on him, redirect him as needed, remind him to eat, etc. He will change as the disease progresses, while not all Alzheimer's patients get violent I've had many that do. Definitely discuss medication management with the MD and your sweetie. You'll have to make sure that he takes it. Having safe activities for him to do will help occupy him some. I had one gentleman who was a carpenter and was always looking for something to fix--someone (don't know who) finally thought to get him a child's toy carpenter set and that would keep him busy fixing things around the facility for hours on end. I had another lady who was a nurse and so I'd give her paperwork and "charts" to review for me to sign off on. My grandmother enjoyed shelling pecans and peas and folding laundry. We kept her busy with that kind of stuff. We'd have to take her to the bathroom because she forgot to go, we had to tell her to eat and eventually had to feed her because she forgot how. She also had a stroke about a month before she died and while she was still able to walk and physically function, she could not talk properly and would just repeat the same "nonsense" words and phrases over and over. Many Alzheimer's patients will repeat things constantly, or look for deceased loved ones, or ask how to get home among other things. It is VERY challenging to be a caregiver and keep your own sanity and not end up resenting that person. Bringing up any health issue with someone is difficult, but especially when the subject is Alzheimer's and how forgetful they are becoming but it is a very important conversation to have. You should also look into power of attorney for healthcare and financial if you don't already have it. And do it before he gets to the point that he can't legally sign the papers as then you'd have to go through the courts to do it and it'd cost alot more. You should most certainly bring all of this up with his MD. The MD should be able to give you some information on any resources available in your area, such as long term care facilities, home health options, monitoring services (here we now have a fairly new system that can be used to track a person --kind of like wearing a house arrest ankle bracelet), respite services, etc. While I don't know all the details of your own health problems, it is important to take that into consideration as well. Having cancer is stressful enough and additional stress and worry is not good for anyone, much less someone who is already immunocompromised--you are opening yourself up to more risk of infections with added stress. I am not saying to just take him and dump him somewhere, but to carefully consider your own health issues and face the reality of just how stressful, time consuming, challenging and frustrating it is to care for someone with Alzheimer's. Follow up with any and all community resources you can find---also check with hospice care. I'm not sure if Alzheimer's qualifies as a hospice eligible condition but they are a fantastic resource for information on all kinds of health issues and can probably direct you in the direction of where you can get help. Also some hospice organizations offer respite care. You will also need to make sure that you have a system in place to handle when he starts to wander, the likely hood of dealing with sundowners syndrome (not fun, usually these people get more agitated and can get violent as the sun goes down), episodes of violence (if he is one of the people who get that way, he may not but be sure to have a plan to handle it), if he decides to refuse medications or food what will you do? What will you do if he does wander and gets lost? What about if he has to be hospitalized (here I'm thinking more financial/power of attorney/guardianship type of issues that will surely come up)? Taking him to MD appointments and for follow ups? What about the options for therapy services (not sure what is offered where you are, but you might look into it)? Check around with facilities near you that do offer Alzheimer's care--they should have a specialized unit just for Alzheimer's residents. You'll want to look for ones that offer a home like atmosphere, with lots of activities to keep the residents occupied. One place I worked had a kitchen set up, a dress up area, a "workshop" there was an area for child care of the resident's baby doll children, and an outside garden. Also look for secure doors that you have to have a key or passcode to open. While this option might not be one you want to do now, look into it and get all of your options no matter how hard it is. The more options that you know are available the better prepared you will be when you get to a point that it might be a viable one. I hope this helps.
Rachel
Farmgirl Sister #2753
True enlightenment is nothing but the nature of one's own self being fully realised-- His Holiness the Dali Lama
www.madameapothecary.com |
| rough start farmgirl |
Posted - Feb 06 2013 : 3:58:00 PM
Margo,
I have no first hand experience with Alzheimer's. It seems a painful process to watch someone disappear. But, I know you would do it out of love and respect. Still, I think it is a very large undertaking given that you are still feeling some effects of your cancer. I think you will need to have some legal aspects set up so that you can make decisions for him. I suppose this should be done immediately while can be considered of sound mind. Also, you should know what benefits he will have available. You will need help. And I think it is important to take it sooner rather than later. With help, you would be able to focus on keeping him engaged in life. I hope you can get some answers soon so you can prepare. No one knows what sort of timeline their disease will follow. Prayers sent your way.
Marianne |
| Penny Wise |
Posted - Feb 06 2013 : 2:39:54 PM
annie...thank you your wonderful response!
i have had to guard our adult to adult relationship for years and so i understand that . things are obviously quite different than when we started our life together 13 years ago.
sweetie basically has no life and i feel horribly responsible for this yet i am not! his brothre/best friend died in october ...he has no one else but me--well-the neighbor when she comes over which is infrequently...i'm at work all day and exhausted when i get home- i am still seeing some lingering "stuff" from my own cancer treatments....we don't go anywhere or do anything ...i try to create activities and he is so grumpy about it....i could go on...
sorry- i'm feeling like a whiner!
he loves in his jammies and scuffs between the klitchen and the bathroom all day- he DOES take the dog out during the day and feeds the animals (dog and cat)...but that's it..he won't read anymore so he watches tv all day that he is up. he can't be trusted to cook and i do not want him driving (eyesight/reflexes).
well- i need to get home- again, thank you for taking the time to reply...i'm glad taht you are able to be more a part of he world now!!!!
Farmgirl # 2139
proud member of the Farmgirls of the Southwest Henhouse
~*~ counting my pennies; my dreams are adding up!~*~ |
| AnnieinIdaho |
Posted - Feb 06 2013 : 2:14:20 PM
Hi..I have no experience with Alzheimers, but when I was down with Fibromyalgia and Chronic Fatigue for 5 years unable to walk I learned that my relationship with my husband did change because I was unable to "be all that I could be" or even begin to be able to participate in what I used to be able to do. Illness of any kind, especially long-term, redefines a relationship. Your caregiver role can place you in what seems to be a parent-child relationship dynamic, but if you relate to him adult-adult this will be easier and keep him more in the "husband" category. Let him do what he is still able and willing like an adult would. Let him speak his mind---(parents often speak for their children taking away their voice). Nurture yourself and add him to your living whenever you can. At some point I have seen most people end up needing skilled support services to care for advanced Alzheimers. Take each day as it comes, and when he no longer remembers you, ask him if he would like you to be his friend and take care of him. Formal labels no longer have relevance at this point, so just "take what is good" and get help for what you may not be able to take care of. Best to you. I am better now and walking again. The only way we made it through my "not being able to be a part of daily activities" was that it was my responsibility to ask for help when needed and negotiate how our living together would be defined. I had the help of a therapist with this. However, with Alzheimers the individual is not able to do this step, so there will be different communication and a specialist could help you become aware of the stages and what is attainable in each. It is all a process. Best to you. Annie
"The turnings of life seldom show a sign-post; or rather, though the sign is always there, it is usually placed some distance back, like the notices that give warning of a bad hill or a level railway-crossing." Edith Wharton, 1913 from 'The Custom of the Country'. |
| Penny Wise |
Posted - Feb 06 2013 : 11:14:54 AM
i think that i need to add...i will go online to look at resources and i will talk with his doctor-my concern right now and my reason for asking you all...those of you whom i have had contact with the past few years "get " me...you know what i have been through and how i think and you also have wisdom that i cannot get from doctors and etc...
the caring and compassion in this group is so awesome!
i am not asking medical advice!
Farmgirl # 2139
proud member of the Farmgirls of the Southwest Henhouse
~*~ counting my pennies; my dreams are adding up!~*~ |
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