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Guys, please get yourself checked for Vitamin B deficiencies, especially your dementia addled parents/partners. This can mimic dementia and alzheimers, but is often missed by doctors. Treatment may not repair the effects of B deficiency, but it will halt its progression. Also, look into a good probiotic supplement for yourself and your loved one. There is now plenty of medical evidence linking the microbiome to stress, depression and somatic illnesses.
Of course, check all of this with your doctor first before taking anything.
Hi tgengine. Kind of same story. Except we planned my mom moving in 23 years ago. The 3 of us mom husband and myself agreed that financially it made a lot of sense. I'm an only child. She was/is single. She was fun back in the day. We had parties all the time. Mainly family but good times. She was in her late 50's. Younger than my husband is now. I was early 30's. It worked for a long time. Doesn't anymore. She has MCI. She's 79. Acts 109. No more parties. My daughter and her bf have their space upstairs. Kind of a suite. My mom has first floor and bedroom upstairs. Husband and myself finished basement. 2 dogs. I miss my dining room. My husband misses the kitchen. We never cook anymore. Family room is right next to kitchen. She sits there 14 hours a day. Feeds dog treats on the leather couches. She knows where we at all times. Because you got to pass family room to go up/ down stairs. Hard to not feel trapped. She has no friends. No interests. Now stopped caring how she looks. Is on aricept and anti depressant. So many people are in our situation. I have limited answers. Just trying to stay positive and be grateful for what I do have. I have "met". / encountered many people on this site and they have all been so nice and helpful because we can empathize with each other because we are living pretty much the same. Hope this helps a little
I moved Dad is 3 years ago because after mom died he was not taking care of himself or even his dog to that matter (left alone 24 hours and fed high fat foods... the dog). Dads weight, sugars etc were out of control. So I packed him up "and moved to Beverly".. as the song goes. Suffice to say prior we were the entertaining couple. every weekend with friends either our place or theirs or out to dinner. We had an oasis installed for summer parties. Dinner parties in the winter. Did my best at intimate dinners with my wife. Dad moved in to the formal living room (my grand home business office). We tried entertaining but dad became friends with my friends all of a sudden. Sat right in the middle of every party (I get it, he is lonely). So I tried my best to let him participate. After a while we started to entertain less and less. We dont go out as often because we dont know what we will come home to (mess in the house). My wife is upset because of some of the smells (he is getting better at laundry of is clothes and bathing). I have become attached to my home 24/7. he is very mobile and able to be social and does get out. So why has it impacted us so much. My wife does not like to leave the house now so I am stuck. Now the kids moved in for temporary (2 weeks a year ago). So now 3 dogs and 5 adults....... No entertaining except for a few holiday parties I push for. Last night I tried to get my wife to go out for ice cream, cant even do that..... We have a weeks vacation planned so I installed an outside surveillance system I can access so I can have some piece of mind while I am away. Part of the reason is I am in the basement for my office now and I cant see who is coming in the driveway or at the front door.
Yes, my mother wants to go everywhere with me, even when I run to the bank!! I need time to myself even if it's just running errands!! She's so selfish, she only cares about herself, my therapist says it sounds like she has always had a personality disorder with narcissistic tendencies!!
My Mom passed away last month. All the while I was caregiver for both my parents (Dad passed away last Sept) I kept contact with friends. Since they are all 2000 miles away, I don't expect visits. But, I get cards and calls.
Next summer I am going to do the grand tour and visit each of them in turn....spend months doing it.
Do not stop living, planning for your own future, and working toward that goal.
I have lost my friends too, caring for a mother in law, I have really become a recluse, the only joy was my mastiff and he passed away. They have stopped calling because I have stopped calling knowing I can not visit them I do not drive. I have a 1 and a half hour once a week from a caregiver paid by the canadian government but really that is not enough. My only joy now is the internet and shows on tv and daily motion which I watch all the eastenders and coronation street. It has got to the point where I deliver her meals and quickly disapear downstairs.She calls me when she needs me I just needed that break, she can walk and has a stair lift she has a good memory but refuses to rinse her dishes on purpose I feel like a maid rather than a caregiver. I feel depressed so I put the word out to her sons who live a ways away from the city that I will be taking 2 weeks off in this summer and they have to come up with a plan. it is now out of my hands see what they will do now. I am grateful for them because at least one comes and takes her out every saturday, gives me a sleep time. I think a person has to lay down their wishes before they go insane and mean it.
Thank goodness my friends accept him. We go out 1 a week for dinner and if my son can't come in to take care of him they say it's fine if he comes along. I would like to be able to go out more often in the evening but it's difficult
Depression, trying to manage to live and pay for basics bills while covering care in a ALZ facility for a spouse is difficult. Lots of adjustments to make both mentally, financially, and physically to survive.
I manage a loving and fulfilling relationship with my Rottweiler.
Everyone else? Not so much. Friends would ask me out/over and no matter how many times I said I'm tied to home because mom falls a lot, they expected me to make the effort to go out (and it requires effort- like one more chore) instead of them coming to see me. I have a separate place from mom, big yard, park across the street, I would even cook....but nope. Eventually, they stop calling at all.
Even my sibs who do try fall short and I have become bitter.
My dog is always there for me and asks so little in return. People should take a lesson from man's best friend.
everyone this is a two person disease that spreads. people will avoid you. you need to respect your own needs as well as theirs. stop blaming them for their and your limitations, cut back on the grocery bill. use that money to hire someone to watch your mother for an hour or two. invite a friend out to lunch. a movie. a hike and laugh and talk about anything but your mother. her disease talks not her. do not become part of it. she can't help it. pay attention to your husband hold him and smile. no mother wants you to suffer with her. remember to have a life. caretaker for 17 years. still smiling and holding the man I married and just accepting his disease. but I know how you feel because I do it alone. when I feel desperate I make a phone call to a neighbor and talk about anything but him.
I know what it is like being a caregiver, my 👩 is in assisted living now but u still have to watch everything. Hang in there. and no parent should ever have to lose a child especially to suicide, I know I would never get over it if I lost my son. Blessings to you both.💝
I was reading this when my sister phone & we shared some pity party times we've had. She said after her husband died she went into her pity party & decided to start calling 2 couples for dinner. They could visit while she was getting dinner on table. She said her thoughts went to what will I serve them & setting a pretty table. Well I know my alz husband would be a little different but w 2 couples they could visit. I also decided I need to call a friend to go to lunch with while hubby is at day care. Well I will say nothing is better than a support group. We can dump on them as they understand. They can even give suggestions you might not accept from relatives. Just some new thoughts I now have to act on.
GrannySmith, your wisdom is greatly appreciated. The take-away lesson is that the generation older than all of us caregivers never expected to live as long as they are. One of my dear in-law elders, now deceased, was debilitated by COPD. She actually said this bluntly in front of a lot of us family: "If I'd known I was going to live this long, I would have taken better care of myself." And among those who never thought they'd 'live this long', there are many others who don't realize that dementia in its many forms is creeping up on them. My mother was one of those and hers was also related to COPD. I was POA for her and organized her Assisted Living and then Nursing Home care; then, took on the POA oversight of an elderly friend who was not related to me, until she died. A month after that, my husband had the stroke and that was my initiation into direct care once he was well enough to come home (months later). I'm POA for him now. I consider this last role an honor but it has taken away much of my professional identity and my freedom. It isn't the older folks (80s) who never thought this would happen to them. It's us.
I think sometimes caregiving can actually make people stronger, physically exhausting but emotionally stronger. It's been difficult at times being the only caregiver for my 81 year old parent for four years now and having no social life, it's been lonely, as well as aggravating when you watch everyone else walk away and live their lives. I put myself in my dad's position and think how he must feel about that. I know how I'd feel to watch my children walk away from me and not even visit, it would hurt. Caregiving is an education as well, I also look at it like that. Once I got past the loss of my husband and my life being flipped upside down, I have learned so much in this process that I am thankful for and my dad has taught me. It's good to know that most likely given the little help I've had taking care of him, and no one visits either one of us, it's educated me clearly to see what my retirement is going to be like, likely similar to his if I don't make changes and prepare for that, still no one will visit, but I'll work on being more independent than my dad could be. The other education is all the paperwork, processes, how hospitals work and nursing care, various medical issues, and nursing facilities, I'm sorry but it's such a racket, 4,000 to 12,000 a month and that's outside of insurances? Then again I live in the worst state for nursing care. I will never have to see my dad in a wheelchair slumped over and pushed against a wall with dozens of other elderly people lined up all day long, with the entire hall smelling like a diaper pale. I will never have to see that again and he'll never have to live that way.
Caregiving is definitely grounding, no social life comes with that, I see it as a trade off. I'd been through a lot of loss the year before I suddenly became dad's caregiver out of nowhere, it grounded me in my life, kept me from making decisions I would have regretted, like moving away where I'd know, no one. It is a life changing choice, I don't know how anyone can get back to a family that abandons you either, but it is easy to get back to a social life, there has to be some social groups out and about for caregivers, maybe there should be, good idea. Meet up once a month as a small group, go see a movie, go bowling, etc... Hugs to everybody.
Hi Tired 104. Yes the situation needs to change. Agree with everything you wrote. How do change it is answered individually. For me, I'm just not ready to ask her to move to assisted or independent living because she's lived here so long. It would be cruel in my opinion . My 21 year old thinks she 's not ready for assisted living and too far gone for independent living. She does all ADLs. Hi Rainey. So right " trapped like a rat in a cage". So true. Thanks every one who responded. Glad we have this site
I think friends just don't know what to say or do. I think you have to keep being social yourself. I too feel friends slipping away. I may have to get new friends.
Tired1of4, You amaze me once again with your poignant words. You are absolutely right on so many levels and it is the heartbreaking truth. Our new realities we must surrender to. Trapped like a rat in a cage, watching our lives morph and change around a parent who needs our help and often cannot afford being (or wanting) to live in an expensive facility. We see little choice and just do the best we can. Yet here we are, looking for someone that will understand, we can relate to and listen to our cries so we don't feel alone in this world. Thanks for being you.
Siblings? I can barely handle the thought of them, as they both are useless in helping with care for my mom. I have a group of friends who I was very close with who never experienced caring for an elder parent, and they would look at me with "new and judgemental" eyes whenever I talked of how horrible caring for my narcissistic, stroke-affected mother is. All they ever saw was how "sweet"' she was. I have a few friends who have lived through the horrible truth and reality of dealing with someone near the end of life who is angry and miserable...and they are the only people I can truly express myself around.
.... I've just read many of the comments ..Erin (original poster) have you read all these... the reason so many people simply start to bleed their thoughts no matter the subject that opened the discussion, It's because there's so much forced silence wanting and needing to come out, to be heard from so many people in your same (and mine) or similar situations ... The sad, the lost, the weak from exhaustion yet strong screams for help via typed words being expressed on this and other thread subjects, the words typed from most everyone, are hard to read.
I can "hear the crying, the confusion,and the changes that have happened to these once vibrant people who are thrown into the 24/7 cargiving role. People who have no help, who are deeply hurt, who feel left abandoned because they have been by family, friends, and basically the world, the world that keeps rotating and existing without them and they know it, they know no one wants to do the job they do so everyone stays away like the plague ... that hurts, deep. .... all because they are helping another human survive, and are still in the situation because they have found no better option yet .. .. reading how it stifles the inner being of who they are and the only place they feel safe to voice their thoughts is an online forum. It's heavy...this situation most of us are experiencing needs to change... needs to change.
In this forum, and in a physical caregiver's support group, is where you will find the most sincere, nonjudgmental and most satisfying support. You can already see from the responses that you are not alone in this difficult situation--there are many of us out there struggling to be a caregiver, struggling to have our own lives...and just struggling. People who have not gone through this can only understand up to a point. And then yes, they do get weary of hearing the day to day trials that you are going through, even when they care about you. They do get to the point where they don't know what to say. Before this happened with my mother, I cannot honestly tell you what kind of supportive friend I would have been to someone who was going through months and years of taking care of someone who loses ground in some way, day by day. I would like to think that I would be there, but I might come to the conclusion that I should try to "wean" a friend away from venting about their situation, without really realizing that venting is just what that friend might need to do. And when you pack on family drama into the situation (siblings who don't help or can't help) that intensifies the feelings of sadness, hopelessness and guilt. My 94 year old mother has Alzheimer's. I had to moved her out of her home to my home where she lived for a year, before I then moved her to a home care facility just this February. I am fortunate to have financial resources so I was able to get help to stay with my mom during the day so that I could go out and be with friends. But the thing is, even when you leave the house, you REALLY don't leave the house, if you get my drift. I found somedays when I was out, I struggled to have a good time. Everyone would ask how my mother was doing but basically my friends were getting together to enjoy themselves and each other. Some days I felt awful that I was out having cocktails and lunch with a friend group and my mother was waking up in a home with people who were not her family.
The first day I physically went to a support group, I instantly felt connected to people who knew and understood the myriad of feelings I was going through, and I in turn could relate to theirs. This support group focused on how WE felt, not on "how to's" for the person we were taking care of. Our facilitator skillfully made sure the everyone had a chance to speak so that it didn't become a one person counseling session. People cried unabashedly when they needed to, and the feeling of "you are not alone" was like a comforting blanket.
I work very hard to find balance in my life, even when I don't feel up to it. I make myself do things because I know I need to. I consciously work at not bringing up my mom in a social setting unless I am asked, and then I keep my report short. And occasionally I do ask a friend to listen when I really need to spill my guts...but I save my deep pool of despair to take to the relative strangers who bring theirs as well. That's what works for me.
everyone needs time with others. your mother's personality will become stronger as the disease goes on. talk to her doctor about a behavioral drug. forget your brothers and sisters they have made themselves clear. look for other solutions that allow you time for yourself. how about your husband can he sit in the house while you go out? grandchildren? the more you stay with mom the more you'll become like her. caretaking starts with the caretaker if you get sick what happens to her. make plans loss the drama that's holding you down. make plans and do it. people will appear that you didn't think would if you are not only strong but live a life.
Hello. I am also going through a very difficulty time as a full time sloild care giver for my ( all alone :() None of my brothers or anyone involved) Mom Alzihimer's has been living with me for almost 5 yrs.. I lost contact with all my friends due to my situation. This web-site has helped me in a great deal. I know, I am not the only one who is going through a this hardship. I am also work as a part time and caring for my elderly (dementia ) mom. I thank you for your wisdoms and an emotional support for all of you. Allison
Great answer, none of my wife's family asks anything about their mom,sister,grandma, friends, even church friends I'm sorry to say. Its best just to leave it in Gods hands and we take care of our duties. Let them join the shoulda, coulda, woulda, if only ida club on their own. :: ((
Erin, You opened up a can of worms on this thread! LOL! I am willing to bet a whole lot of us out there are in this situation! From non helpful siblings living their lives to friends that know your current situation and don't want to be around "the geriatric zone." Can't say I blame them so much. It would take a former caregiver that was in a similar situation to understand, sympathize and occasionally come by to "make our day a little brighter." It's a lonely life for both caregiver and the one being cared for because even the best of us gotta get our time to regain our sanity, even for just a couple hours! Oh, not to forget our significant others that just get tired of hearing us vent our daily frustrations and how that relationship can be impacted as well. Yep, I am willing to bet their are going to be a lot of responses to this one! Only your REAL friends will stick by you, you will most likely meet new ones 😉 that will be there for you when you need it. Yes, my whole family is on non- speaking terms now because they never ever offered any help, just how much money can I try to get out of Mom and the jealousy she picked me over them. They have NO idea how lucky they really are.
My abusive mother has managed to turn family, friends etc. against me. She was always abusive and this is her new way of trying to destroy me!!! I wanted to mend our relationship towards the end of her life, but not her, how silly of me!! The only reason my oldest brother helps out is because he lives close by and I threatened to put her in assistant living or nursing home and he knows they will take all her money!! My middle brother is a little over an hour away and won't take her at all to give me a break. My other brother lives too far. He calls every 4 months. No one is permitted in my home anymore because they all want to treat me the way my mother treats me. I make them take her out or go over my oldest brothers house to get some time off for myself when they want to see her. I have to play these games with them all to get some kind of help!!!! It's forced on them and they all talk about me and try to hurt me. I try to tell myself I don't care but I'm so hurt by going through all of this. This is going on for three years now and I don't know how much more I can take, my mental, physical and emotional well being is horrible!!! I try to see the good in people and look where that got me!! : (
By proceeding, I agree that I understand the following disclosures:
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III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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All the while I was caregiver for both my parents (Dad passed away last Sept) I kept contact with friends. Since they are all 2000 miles away, I don't expect visits. But, I get cards and calls.
Next summer I am going to do the grand tour and visit each of them in turn....spend months doing it.
Do not stop living, planning for your own future, and working toward that goal.
Everyone else? Not so much.
Friends would ask me out/over and no matter how many times I said I'm tied to home because mom falls a lot, they expected me to make the effort to go out (and it requires effort- like one more chore) instead of them coming to see me. I have a separate place from mom, big yard, park across the street, I would even cook....but nope.
Eventually, they stop calling at all.
Even my sibs who do try fall short and I have become bitter.
My dog is always there for me and asks so little in return. People should take a lesson from man's best friend.
Caregiving is definitely grounding, no social life comes with that, I see it as a trade off. I'd been through a lot of loss the year before I suddenly became dad's caregiver out of nowhere, it grounded me in my life, kept me from making decisions I would have regretted, like moving away where I'd know, no one. It is a life changing choice, I don't know how anyone can get back to a family that abandons you either, but it is easy to get back to a social life, there has to be some social groups out and about for caregivers, maybe there should be, good idea. Meet up once a month as a small group, go see a movie, go bowling, etc... Hugs to everybody.
You amaze me once again with your poignant words. You are absolutely right on so many levels and it is the heartbreaking truth.
Our new realities we must surrender to. Trapped like a rat in a cage, watching our lives morph and change around a parent who needs our help and often cannot afford being (or wanting) to live in an expensive facility. We see little choice and just do the best we can. Yet here we are, looking for someone that will understand, we can relate to and listen to our cries so we don't feel alone in this world. Thanks for being you.
people I can truly express myself around.
I can "hear the crying, the confusion,and the changes that have happened to these once vibrant people who are thrown into the 24/7 cargiving role. People who have no help, who are deeply hurt, who feel left abandoned because they have been by family, friends, and basically the world, the world that keeps rotating and existing without them and they know it, they know no one wants to do the job they do so everyone stays away like the plague ... that hurts, deep. .... all because they are helping another human survive, and are still in the situation because they have found no better option yet .. .. reading how it stifles the inner being of who they are and the only place they feel safe to voice their thoughts is an online forum. It's heavy...this situation most of us are experiencing needs to change... needs to change.
In this forum, and in a physical caregiver's support group, is where you will find the most sincere, nonjudgmental and most satisfying support. You can already see from the responses that you are not alone in this difficult situation--there are many of us out there struggling to be a caregiver, struggling to have our own lives...and just struggling. People who have not gone through this can only understand up to a point. And then yes, they do get weary of hearing the day to day trials that you are going through, even when they care about you. They do get to the point where they don't know what to say. Before this happened with my mother, I cannot honestly tell you what kind of supportive friend I would have been to someone who was going through months and years of taking care of someone who loses ground in some way, day by day. I would like to think that I would be there, but I might come to the conclusion that I should try to "wean" a friend away from venting about their situation, without really realizing that venting is just what that friend might need to do. And when you pack on family drama into the situation (siblings who don't help or can't help) that intensifies the feelings of sadness, hopelessness and guilt. My 94 year old mother has Alzheimer's. I had to moved her out of her home to my home where she lived for a year, before I then moved her to a home care facility just this February. I am fortunate to have financial resources so I was able to get help to stay with my mom during the day so that I could go out and be with friends. But the thing is, even when you leave the house, you REALLY don't leave the house, if you get my drift. I found somedays when I was out, I struggled to have a good time. Everyone would ask how my mother was doing but basically my friends were getting together to enjoy themselves and each other. Some days I felt awful that I was out having cocktails and lunch with a friend group and my mother was waking up in a home with people who were not her family.
The first day I physically went to a support group, I instantly felt connected to people who knew and understood the myriad of feelings I was going through, and I in turn could relate to theirs. This support group focused on how WE felt, not on "how to's" for the person we were taking care of. Our facilitator skillfully made sure the everyone had a chance to speak so that it didn't become a one person counseling session. People cried unabashedly when they needed to, and the feeling of "you are not alone" was like a comforting blanket.
I work very hard to find balance in my life, even when I don't feel up to it. I make myself do things because I know I need to. I consciously work at not bringing up my mom in a social setting unless I am asked, and then I keep my report short. And occasionally I do ask a friend to listen when I really need to spill my guts...but I save my deep pool of despair to take to the relative strangers who bring theirs as well. That's what works for me.
None of my brothers or anyone involved)
Mom Alzihimer's has been living with me for almost 5 yrs.. I lost contact with all my friends due to my situation. This web-site has helped me in a great deal. I know, I am not the only one who is going through a this hardship.
I am also work as a part time and caring for my elderly (dementia ) mom.
I thank you for your wisdoms and an emotional support for all of you. Allison
You opened up a can of worms on this thread! LOL! I am willing to bet a whole lot of us out there are in this situation! From non helpful siblings living their lives to friends that know your current situation and don't want to be around "the geriatric zone." Can't say I blame them so much. It would take a former caregiver that was in a similar situation to understand, sympathize and occasionally come by to "make our day a little brighter." It's a lonely life for both caregiver and the one being cared for because even the best of us gotta get our time to regain our sanity, even for just a couple hours! Oh, not to forget our significant others that just get tired of hearing us vent our daily frustrations and how that relationship can be impacted as well. Yep, I am willing to bet their are going to be a lot of responses to this one! Only your REAL friends will stick by you, you will most likely meet new ones 😉 that will be there for you when you need it. Yes, my whole family is on non- speaking terms now because they never ever offered any help, just how much money can I try to get out of Mom and the jealousy she picked me over them. They have NO idea how lucky they really are.