Hi Rodstar, Don't worry about the typos. I think most of us have had spellchecks that went rogue on us at one time or another. FYI, if you want to correct something in one of your comments, just make sure that you're signed in and then click the "Edit" button at the top right of the post. That will allow you to edit your comment.
It sounds like you and your wife have had quite a time of it. I hope living near your family is making things easier. My father had Alzheimer's and when tings progressed, my mother decided they would move out of their home in the country so they could be closer to my sister, who worked in the city. It was sad but it had to be done. I didn't have any children to help me when my husband's condition progressed but fortunately, we lived near other family members who could give me some backup when things got out of hand.
Myrtle, Thanks for feedback. While in the Air Force I was communications command twice, Air Defence command, Tactical Air command, Security Services Command twice, Air Training command and Strategic Air command twice. I saw how the force was ran. During 2014 & 2015 besides many years of chronic headaches an depression I had Bells Palzsy and 4 TIAs and a near death infection. My wife's alzheimer's was advancing. On my 4th TIA I was unconscious for 20 hours before I got help. She did not understand the seriousness of the situation. Rodstars@earthlink.net My doctors an kids ganged up on me . Get off the ranch and out of the boon docks of Texas and get close to one of our Children. Selling every is a story in itself. The final TIA was,on Oct 11th, 2015. We left for Hobbs, New Mexican and moved in to the Assisted Living Facility-,Landmark at Desert Gardens on th 16th. We have been here Over a year and a half My wife,Diane is in stage 5. A challenge some times. Memory of new information -60-90 seconds, I had to help my mother for two years wit casual dementia.source is 500% harder. I am managing her Activities 25/7 - 356'
My wife, Mary was diagnosed 6 years ago. We have married for 53 years and are inseparable...Mary has been a resident at Elder Health & Living for the past 1.5 years. I have been looking for spousal support group and was pleased to find your site. I visit my wife everyday and find it very rewarding. Your blogs gave me support.
Welcome Wally lots of support here from people who are in the same situation and get it. My wife, only 61, has been in care now for just under a year and a half been a tough go. I visit now about every second day. There is lots of support here, no judgement just a whole bunch of us trying to make sense of it all. It is good to know you are not alone and you are not, we are here, this site has been a lifeline for many of us.
Hi Wally, Welcome to the site. This is a hard road to walk and I have found the support (both practical and moral) on this site makes it bearable. My husband died this March, 10 years after diagnosis and 3 years after admission to a long term care facility. He was better off there, since they had all sorts of activities and took better care of him than I could, but I missed him terribly and visited almost every day, mostly for my own sake. If you have any specific questions or just want to share something, please feel free to post.
New Member Mickey,76 years old retired (ha!) Wife became symptomatic six years ago. Still knows me. Still is at home with me. Like a giant extremely slow reticulated python engulfing both of us. A stay in a psychiatric hospital gave us a med protocol that makes things "better". Were there Dr.s behind those locked doors? Did they "think" anything about her? Nobody knows.
That's a pretty good.description Mickey. Welcome to our little band of spouses in limbo. When I first found this site it was too soon for me. Now I don't know what I'd do.without.this group. Frequently I find answers to weird questions using the search tab. But still the.ability to "talk" with people in the.same boat is priceless. Ask anything here. Here there is no judgement. Here we even have.some fun sometimes.
Hi Mickey, Welcome to the site. I hope you find some comfort here. Many of us have. I wrapped up my Alz duty this March, when my husband died, 10 years after diagnosis and 3 years after moving from our home to LTC (which, weirdly, I came to think of as my new home, too). You're right, this disease engulfs all, in one way or another.
Hello, I have read so much of this blog and forum that I feel I know many of you and already appreciate the advise and strengh I’ve received just reading. My DH and I have been married 52 years and my heart is breaking. He is late stage 6 ALZ with Parkinsons and was placed in the memory floor of an ALF about 6 weeks ago after two stays in the hospital and a rehab. He is despondent, throwing tantrums, and inconsolable. Thank goodness for this site – very few understand the all-encompassing horror of dementia and the unique despair and suffering of the spouse.
Welcome, Aug44. I'm sorry that you have to meet us all this way, and we understand how devastating it is to have your spouse striken by this horrible disease. Each day is a challenge, but we get through it with each other's help. There's not much that one or more of us hasn't had to face, and there is much help here. I hope you will post and let us know how you are and if we can help in any way.
Welcome Aug44. This is a very vulnerable time for you and you wont be able to share your fears of being more on your own with your hb. This is a good place to explore those feelings and vent and just not feel ALONE.
Aug 44, Welcome to the group no one wants to join. Though my DH never was in a care facility we went through a lot of the feelings you describe. There are a lot of people on this board that have gone through the trauma of placement and will probably be here to comment.
I have just discovered this forum. Husband of 40 years diagnosed almost five years ago with MCI. Word retrieval problems now and names almost completely gone, although he seems to know who everyone is. Sweet and gentle as always, but passive and even voice getting softer. I have totally lost my intellectual partner, jokester, rock, and a very great visual artist can no longer work. He is still home, and I am trying to keep things norma. He is in complete denial, and...I can't find the love I one felt. Want o run away. Spend lots of time in my car. There, I have said it out loud H
Welcome helenekw - glad you found this forum. I know how you feel. At the beginning when we first found out my husband had Alzheimer, he also was in denial - like you I wanted to run away & that was a very strong feeling - one I felt daily. I didn't care where I went - I just wanted to get away from him.
I also could not find the love I once felt - that's a very difficult feeling to deal with.... I did not know about this forum, so I could not share that with anyone - tough to keep that inside.... Those feelings eventually diminish - at least they become more manageable. For myself, I now feel the love for my husband again & I don't really feel the need to runaway from him. Don't get me wrong, I hate what's happened to our life, but I feel stronger & more able to cope with this awful disease. With time it will get better for you - what does help is getting some respite for yourself - you need to get a break from his dementia symptoms.
I just posted on another thread before I found this one for new members. My husband has mild/moderate alzheimers and has become a "velcro spouse". I have no privacy, he wants me with him all the time.
welcome Oakridge. You are not alone. The lack of privacy is one of the hardest parts to this Alzheimer's spouse caretaker's thing. Other types of caretakers don't get it.
Thanks Rodstar43, I originally posted in....dependent spouse thread.. and see a number here share some of my feelings that I can't articulate to friends or family.
Hello, everyone I like what appears to be a very open conversation here and look forward to seeing what I might share and learn. I've been a caregiver for my husband for 8 years. Early on, I went to a support group for a while; over time a close friend and a therapist have been helpful. However, I don't have anyone close who actually is going through this experience. The Alzheimer's Association's services have a gap as it relates to providing more social outlets for Alzheimer's spouses; I've given the local group that feedback and they recognize it. Meanwhile, it is good to find this community.
My husband and I are 20 years apart - we had a wonderful marriage and partnership for a long time. He is 87 and seems to be in early/middle stages. Dementia started 8 years ago (probable hybrid of Alzheimer's and vascular). He has been diabetic for 30 years. So, his age, diabetes, and dementia all come into play.
Hello, helenekw I can relate to your pain. I also agree with Nicky's comments. There are many stages to the disease as well as to the caregiving journey. They change and we adjust. I humbly offer some ideas that keep me afloat.
Love for your husband is like an internal reservoir that is depleted if you don't fill it up with experiences that feed / nourish you. If you can get more sustenance for yourself, you will be happier and have more to give him. You will be able to feel compassion and tenderness for him again. But first, find ways to show it towards yourself.
Everyone has their own activities that make them feel energized. Mine are regular exercise, seeing friends, doing volunteer work, dancing, and creative activity. My mind is my own worst enemy sometimes, so I also practice yoga and meditation.
Hi Sylvia, Welcome to the site. For someone who has been caring for a spouse for 8 years, you seem to have a very positive outlook. I'm sure you have much to teach us.
Hi Sylvia, from Hobbs New Mexico. Caretaker of DW with AD, married 55 years. she also has simple partial sizzures and angiosarcoma, a very rare agressive cancer.
We look forward to trading words of wisdom, anger, humor, empathy and knowledge.
Welcome Sylviavs, Oakridge, and Helenekw. Sorry I don't always remember to look at this thread. Welcome to the group no one wants to join. This is a terrific, safe place to find the information we need to fill our caregiver role, and a place to vent with folks who "get it" and will have our back. When I started on the alz journey some of the stuff here scared me and I just lurked without joining for quite a long while. Now I am oh so glad I started talking, well writing, you know what I mean.
Hello, I'm just here checking out this sight, searching for something to help me keep going. My husband was diagnosed with EOAD five years ago. He is at a odd place where you either cannot tell there is anything wrong....or it's really obvious. ....
We have been together 40 years...as of a few months ago he hates me....
He is a veteran and the VA offered daycare or for someone to come in a few times a week but he strongly refuses both....I am going it alone
welcome Sedgly. Yes, when they are still good at letting others think they are 'normal' but behind the closed door of your home you can see it.
My husband was diagnosed 10 years ago this month. He goes to day services (care) 3 days a week paid for by the VA. Thankfully he had no problem with going. He is a social person and the socializing her gets there is good for him and me. When I told him he was going I said something like 'unless you want me to die before you like your mother did with your dad, I need the time to myself'. I did finally use the respite last month to go to the Alzheimer's care meeting and he was no happy with me. Oh well, too bad.
Hi, I just found this site while online looking for information. My husband was just diagnosed. This after a stroke and developing a seziure disorder. I was in deep denial until this last seizure which rendered him incontinent. Looking back he has not been ok for many years. Slowly our lives dissapeared as he was able to do less and less. Now he needs 24 hr a day care, will not eat or take meds unless its given to him. He gets up in the dead of the night and walks out the front door. I cant leave the house or he will wander out. Neither he nor I have any family that can help. I am working on getting him into an adult day health program so I can leave the house to look at memory care facilities. I feel like I’m living in a nightmare, its very hard to accept that there is no chance for healing or a happy ending; that the best I can hope for is that he passes easily and does not linger in this hell for years more.
Hi Sedgly and Laura57, I'd encourage you each to pose a comment or question in a new thread which can start a line of conversation of your own. Otherwise things get mixed up and people (or at least me) are reluctant to comment on this "introductions, start here" thread. There is lots of encouragement and experience available, especially for specific questions or issues.
Another excellent site is www.ftdsupportforum.com. Although it is primarily for frontotemporal degeneration, all dementias are represented as symptoms can be similar and no diagnosis is for sure. I've found a lot of help on that site as well.
I want to welcome new members to this site - there seem to be a number of you - Sylviavs, Laura57, Sedgly, There is, if you go through back pages, a wealth of information. There is also the support, advice, encouragement from those of us still active on this site. I truly found this the only place that I could let loose my fears and pains, problems and worries without worrying about totally overwhelming someone. Each person on this site "gets it". And will support you on your journey if you wish it. I am so sorry you are in this situation that no one wants to be in. Do know that we are all here for each other and look forward to getting to know you better.
Welcome and as Lindylou said there is a wealth of information here and loads of support. Nobody gets it like another spouse going through it. This site has helped me travel through this awful journey and I hope it does the same for you. Come often it helps to know you are not alone.
Hello, my name is darla and my husband has not yet been diagnosed with early onset alz, although we have ruled out everything else. He also has vascular dementia. He is still working, and has mostly good days during the week but his bad days are on his days off, and he is starting to become more agitated on the days when he is not thinking as clearly. Dealing with him is exhausting. I am feeling overwhelmed and scared about how I will get him care when he is no longer able to control his agitation. I don't know at what point I will need to get him help, or even where to turn FOR help. Every one around us seems to think that I am trying to "control" him, and since he hides his symptoms well, it looks, to those not involved in our lives, that I am imagining things. His doctor is the only one who believes me, thank God. I love him and don't want to see him lose any independence sooner than is absolutely necessary. Which is also the reason that we are trying to have him live as normal a life as possible for as long as possible. Driving skills are fine as long as he is familiar with the area. It's just his agitation that's bad when he gets anxious.
Welcome darlag. Yes, it is very exhausting to them to try to stay 'normal'. Early on, when they are in a safe place, they will relax and 'crash' which it sounds like is happening. You say he is driving. What will happen when he gets lost or some one tics him off? Will he get agitated which can turn into road rage. If the doctor believes you, will he prescribe something for him to keep it at bay?
Is he aware of his problems?
Question: was he this way before his stroke? (I assume a stroke which is usually a precursor to VaD.) My sister became nasty after her stroke. Didn't take much to set her off.
"you say: I love him and don't want to see him lose any independence sooner than is absolutely necessary."
But, you have to weigh his safety and those around him too.
Also, very common for others to see them as normal because they use every ounce of energy they have to maintain that image.
Hi, I'm dconner. I live in Indiana. My husband is an alcoholic with dementia and has been living in an assisted living facility for 6 months now. He has not had a drink in 6 months. His dementia was masked by the drinking for a long time. We blamed the lapses, craziness, etc on the drinking. He thinks he owns the ALF and tries to help them run it. :) Thanks for letting me join this group. Support is so necessary!!!
Hi dconner. Welcome to the site. It sounds like you've had a time of it with your husband. I hope his admission to assisted living has given you some respite from the stress we all experience.
Hi I am Mitsou. We moved to Nashville not long ago coming for greater Atlanta, GA. (so I only know my road in Nashville and the grocery store, that’s all.) My husband of 51 years has been symptomatic of Alzheimer’s disease since 2006 – did not want to be tested then. When tested in 2009 was found to have Alzheimer’s so it has been more than 11 years now that he has had the disease. He is in stage 7A – hardly speaks or understands anything, very unstable when walking, is very stubborn. I have been his sole caregiver 24/7 from the start and I am exhausted. I have had 2 knee surgeries and cannot walk well yet, so we stay inside the house. Everyone says to go to “support groups” but I don’t know any around here; the Alzheimer’s association has one but only for newly diagnosed patients. It is very lonely as I know absolutely no one here – can go weeks without talking to anyone, cannot drive and leave my husband alone. I only look out the windows days after days. I thought of looking for online support to speak to people who understand what I am going through.
Mitsou it's probably not appropriate to say "welcome", but I'm glad you've found us anyhow. When I joined this group back in 2008 there was lots more chatter back and forth than there is now, but there really is still a wealth of information available using the search button at the top of the page (if there is anything that you don't already know after eleven years of caregiving). I finished Georgia Tech in Atlanta a loooooong time ago (1951) and have a great nephew in Nashville, so that almost makes us cousins, doesn't it? My caregiving journey ended nine years ago, but it must have been about like yours -- about ten years from the time we first started noticing things, diagnosis a couple of years later, then a gradual decline over about seven years, and with the last few months under Hospice care, but still here at home. I was very fortunate in having my 52 year old mental health counselor and confirmed bachelor son move back in with us for the last year, allowing me some freedom to do errands and even begin some limited resurrection of my social life instead of being tethered to a baby monitor 24/7. My wife died just days short of our 60th wedding anniversary, and not wishing to be alone, seven months later I remarried -- to the widow of a dear friend since Georgia Tech days and my wife's best friend. Life still isn't a bowl of cherries for us now, with my new wife requiring more and more help as her dry macular degeneration progresses toward blindness, but it still beats being alone. So anyhow, you've found a cousin to talk to here, so I hope you'll come back often.
Mitsu, I am so pleased that you joined our support group here. Believe me these people understand what you are going through because we have been there. You say you are exhausted and we can understand why. It seems to me that you need some help and if there are no support groups near by, please consider calling visiting angels or one of the companies that offers in home care. You need time for yourself or the disease will kill 2 people. Also you might consider calling the Alz hot line that is advertised on their website. Nashville is a large enough city that I am sure they have a chapter of the Alz association there. Tell,them what you need and I am sure they can direct you to where you need to go. This group literally saved my life at the end with my husband. I ended up placing him in assisted living because it was becoming impossible for me. The fact that you go weeks without talking to,people is not good. Remember you are never alone. Come back and tell us how you are doing. God bless you
Thanks for your replies Gourdchipper and CO2. Aug44 and Elizabeth 9/2/14 answered me on the board Journeys and I am replying to their questions here. I’ll explain more fully our circumstances. My husband retired from a non-profit corporation (with no benefits, no insurance, etc.) in 2005. I had already noticed his short term memory problems. The doctor then said it was just “aging.” In 2007 I took him to a neurologist who wanted to give him a test for Alzheimer’s but he refused. The doctor said my husband had Mild Cognitive Impairment. Since 2005 I had researched to find ways to help him with his memory. Meals included fresh veggies and fruits, fish, and mostly a Mediterranean diet (which was easy since I am from Europe and cook this way.) After the MCI diagnostic I added brain exercises for him, games, and we started traveling more at home and wherever we could afford. I retired in 2008 and we traveled even more then. I took him to the top doctor I could find to be tested. In 2009, after waiting one year we met with the chair of Emory University in Atlanta in brain research, who confirmed that my husband had Alzheimer’s and must have had it for a while. I was optimistic that with everything I did I could slow down his decline. And I did until last summer. The doctor here in Nashville last fall was surprised that he was still doing so well after over 11 or 12 years with the disease. I sustained 3 injuries at work: my ankle and both of my knees. After years arthritis sat in them. Both of my knees were bone on bone and super painful – I had to walk with 2 canes and needed surgery. Surgery was not possible because my husband did not drive anymore and could not take care of us. One of our daughters who lives with her family in a suburb of Nashville suggested that we move to TN and I could have my knee operations in Murfreesboro where she works. She has 4 children from 4 years old to 11 years old and help at home with the children while she and her husband work; the children’s helper could look after my husband. I had a first knee operation last year. My husband had a bad virus at Christmas time and declined quickly. Now he barely speaks, no longer reads, and is very unstable and quite difficult to handle. I had my second knee operation last January. His nephew from California came to help us in our house in Nashville during my therapy as I could not drive but he went back to CA 2 months ago. My husband is a veteran and was in the Army from 1961 to 1967 in active and reserve duties. I spent many days filling VA paperwork to see if they could help him, either by sharing the cost of an assisted living place or giving us the opportunity of getting a VA discount in a secured place. Last Thursday they replied that no, they would not even enter him in their system because laws changed in 2003. If he had been in the system then, he still would be. Now financial reasons came first and we were over the threshold, not because of his finances (he has hardly any savings, no retirement just SS) but because of mine. I get a pension from the corporation I worked for during 26 years. So that’s when I became very depressed and kept crying as I had counted on the VA to help him. After 12 years of constant battling Alzheimer’s I am exhausted, plus I miss friends, going outdoors, eating out once in a while or traveling. Our last trip was for the wedding of our other daughter in California 2 years ago. In the meantime our TN daughter (we have not seen them in over a month) sold her house and while waiting for alterations to the house they are moving into, they left TN until the end of June. I am usually optimistic by nature but have been more depressed for the last few days. I’ll get back to doing some research to see what is available around here. I found several day care places but none of them could accept my husband as they told me he was past that stage – too far gone. Thank you for reading this long entry.
Mitsou, I'm surprised that your husband's military service didn't qualify him for Aid and Assistance or something of the sort, unless you all fail to meet some means testing criteria because of assets or income or whatever. I'm way over my head here, with no personal experience in applying for benefits, but I think I can recall that others here did jump thru the hoops and become qualified. Getting help from local VFW or American Legion folks might have been instrumental. I'd suggest you search these boards for Aid and Assistance or VA or military assistance and see what threads pop up.
Hi...I am new here. My first name is Todd, and my wife was officially diagnosed with Alzheimer's in 2016 when she was 56. She has no family history of Alzheimer's--esp early onset. As part of a protocol we are trying, which I'll mention in a sec, she is APoE3/4 (heterozygous) which makes her slightly more than the average to develop it late in life, and she does NOT carry the PSEN1/2 variants that they look for in early onset. These genetic discoveries came about as we are trying ReCODE since about late January/February this year. We don't have a ReCODE physician, which they go through training for, but are having to do blood tests, etc., ourselves, until I can get different insurance next year. It took us about 2 months to get all the blood tests lined up/paid for and the results tabulated, and we started the insurance we have this year in our enrollment period last year before this was decided. If you don't know about it, you can look here: https://www.drbredesen.com/mpicognition Haven't seen any great quantitative/qualitative gains, and I am not a greatly patient person, though this is "helping" that.
Regardless of what I/we are trying, I myself am feeling angry, lonely, and a bit lost most of the time. I miss long meandering conversations with my best friend and wife about nothing/everything. That is something I am still grieving--the loss of my more verbal companion.
When we married, my wife was 8 years my senior, and didn't look/act like it. The former still is the same--she's beautiful, bright-eyed, and has a youthful look and disposition. Right now, she is having a hard time with hand-writing, basic math, but she is still able to read. She loses words as well. This has been pretty consistently her state since end of last year. She had a sharp decline from March to September when she was diagnosed in 2016, but she at least doesn't SEEM to be getting worse (but maybe I'm "noseblind" if you know what I mean).
Odd part is, I feel like I am the wrong person to be a caretaker for this disease. Don't get me wrong, because I could never, ever leave her--that would tear me up inside in ways I can't even describe. But what I mean is, I feel constantly bad about feeling impatient with my wife when she can't find something, or can't express herself. I help people all day long, then I come home, and I am at least internally peevish and emotionally exhausted. Even if I don't show it on the outside, the way I FEEL on the inside makes me feel like a first class @#$! most of the time. I don't know how else to explain that.
We have a financial/medical Power of Attorney--that seemed drastic at the time, but I think it was dead-on right. I drive her, am her health/life/medication coach, and would like a support network of people who understand what this is like.
Anyway--feeling scatterbrained, and I know this is coming across as such, but that's a quick intro. Thanks in advance, if there's anyone out there.
Welcome to the group no one ever wants to belong to.
Your post is fine and you sound so much like what most of us have gone through or still going through. I can be great, patient and understanding with others but when it comes to my husband I am not. I think this disease can bring out the worst in many of us or at the very least, show us things about us we never wanted to know.
As for trying alternative treatments - go for it. Right now this disease is terminal - no successful treatment. Who knows if one of these alternatives is the answer. At the very least, it may help with symptoms. As for being 'blind' to losses, I think that is common. We are with it 24/7 so kind of slide with it then one day it hits us what losses have happened.
A very lucid introduction, Todd, and I'm sorry you have to be here. My math says that you're only 50 years old, so I can certainly appreciate your feeling angry and lost, and desperate to try anything offering any glimmer of hope. I hope the ReCode business works out for you. We were fortunate enough (how can anything associated with Alzheimer's be considered fortunate?) to be able to enjoy fifteen wonderful Golden Years following my retirement before AD began intruding significantly into our lives, while you're seemingly on track to miss out on any semblance of that unless you can find a miracle. Please keep us informed about ReCode results.
Welcome Todd (aka antproofcase). This site holds a wealth of information, much of it in the message boards themselves. It also is a very supportive and nonjudgmental community which has been a lifesaver to many of us. Feel free to browse, and participate in conversations old and new, start a new topic. I personally have used this site to gain information and advice, vent from the very depths of my being, and to support others. I've taken the advice I've needed, ignored that which I didn't. There is, as you possibly know, no one size fits all with dementia. Look forward to getting to know you. But this is a community and safe place to come to, that has been beyond my expectation.
HI Todd and welcome. This site was what kept me going when my hubby was still at home. I could vent, share experiences, get advice and a listening ear from people who actually understood what I was living. I took a break for a couple of years. My hubby was in a good place and I didn't have anything to offer. But my husband has declined to the point where he is in end of life care and I realized I needed more support so I came back. I also know that I can help others with advice from my own experiences. Now as far as your wife's condition, it is possible that you are not nose blind but that your wife has plateaued. The decline in Alzheimer's is not steady, but has many peaks and valleys. There was a point back in 2012 when my husband first started taking Aricept that he actually reversed in his decline. Only lasted a few months but it happened. We are all therefor you!