My husband has a form of dementia called Lewy Body and has had to live in an adult family home for over a year. I see him each day and he still knows me and can tell me that he loves me! We have no real family, no children, no siblings, and few cousins. We do have wonderful friends; but I am so very lonely. I feel that I have lost my husband, my best friend, my life style, and my hopes because I can no longer afford to do any of the things I had hoped to do in my retirement. In the last 14 months he has lost so much of himself but, sadly, he is still very aware of his deficits and very depressed about them. I am lonely, usually at night and on weekends. I have help from a wonderful therapist and many friends; but I feel like I am closed off from the rest of the world. I meet others who don't know me but are so upbeat and don't understand what's coming. Recently I attended a focus group of other 64 year olds who had been recruited to discuss hopes for medicare benefits. NONE of the other people really understood what it is like to be with someone like Jon. They were worried about things like being covered in foreign countries when they traveled and being covered to go to gyms for free. I am worried about living on a park bench in ten years because my resources will be gone. There is no medicare to take care of my husband's living expenses. He could not live at home because of mobility issues and 24/7 care at home would be even more expensive. I would like to get a job to supplement my social security and teacher's pension but my 25 year chronic insomnia makes driving a car difficult, let alone holding a job. What do other people do to earn money? I have thought of getting a student to rent a room but I am not sure anyone wants to live with me. I am still in a fairly severe stage of grief and often cry all night or stomp around angrily. I have gone to support groups but the subject of money is never brought up and when I did recently, it seemed as if I had broken the eleventh commandment! A friend of mine who lost her husband to AD a few years ago suggested this site. Does anyone have any ideas about money? or loneliness? or what to do with my time that doesn't cost money?
There will be others here who will relate to your situation. This is the beat message board ever. Our journey with dementia has ended so my situation is different but I still gain strength from reading here. Welcome you will find friends at Joan's.
All of us who are dealing with dementia of one kind or another and there is not a one of us who does not worry about $$$$$$$$$$$$$$$$$$$$$$$$$$$$$. Everything costs....and some have too much to be eligible for any kind of grant for respite. I know I waited too long to get any in home help..I manage with 12 hours a week in 3 day blocks of 4 hours each. So that brings me to a bit more than one grand a month...my DH is at home so having someone do meal prep and a few odd jobs that free me up for other things is a huge help. I would like more hours but I also know the costs of the assisted living facilities around here. That coupled with some of the home maintenance jobs that need to be done make me shake my head with some think I should take a trip for a couple of weeks...two years ago I could and did. It isn't that I can't get someone to stay with DH for a spell..it is the $$$$$$$ that keeps me from going. How to earn extra in come? I wonder about that myself...
gardenan, my DH has Lewy Body also! He is still living at home because I can't afford to put him in a nursing home so I definitely have money issues. I also have no one to help me, no family to speak of(they are many miles away and don't make an effort to come and help) My life is very strange, I stay up all night and sleep during the day because at night he roams and wants to go outside but during the day he sits about a foot or less in front of the tv and goes no where and does nothing. That is just the way his brain doesn't work! If it wasn't for my computer and the internet I wouldn't have anything I don't even have a car so maybe someone else can suggest things to do. The only advice I have is to keep coming back here and getting emotional and mental help.
After my husband died, I did not want to downsize, I wanted to stay in my home. It was me and our dog, rattling around, so I began to rent our children's bedrooms to men from a college a mile away. It has worked out well for me, my room opened into a common hall to my bathroom, so I just remodeled the entrance to my room to give me complete privacy, it was just a doorway and didn't cost that much. Mostly they were gone during the day so I had my time alone, which I like. At night I can be part of their activity or stay in my own quarters. I do not cook for them. It has worked out well for me and the money is nice. My sisters could not do such a thing, I think they thought I was nuts. They worried that someone would touch their things, use their kitchen, etc. But things are just things and the company is worth more--but that's just me. I could not have done that if my husband were here.
From the time I was 16 and in school until my husband got sick, I was usually doing some sort of volunteer work in addition to working, I taught reading at a continuation school, I didn't need a teacher's certification just remembered how I had learned and it was very gratifying. That's not paying but there are all sorts of volunteer things one can do.
as Mimi said --$$$$$$$$$$$$$$$$$$$$$ is something the majority of us worry about - the present and future. You are not alone there. Many others here have their spouse in a facility so can identify more with you than I can. But we all wonder if we will have a home, have money to live on, be homeless, broke, etc.
gardenan, you are definitely NOT alone - we all worry about money. My husband is 62, dx'd at 58 with frontal temporal dementia (FTD) and is still at home. Because he has been physically violent towards me in the past, I have a live-in aide who cares for him. Fortunately he has LTC insurance which covers some of the cost but my out of pocket expense exceeds what he gets in ss, so we are running through personal savings quickly. We do not qualify for any financial assistance due to our assets and I have a serious chronic illness which will require me to have assistance. I worry that all our money will be spent on his care and I will have nothing left for my care. I would recommend you consult with an elderlaw attorney to see if there is some way to preserve what you have currently.
You might look on the AARP website where they have a jobs board for something where you could earn some money....perhaps a work at home job so you wouldn't have to drive. Renting a room is also an option if you feel you would be ok with having a stranger live in your home.
This is the best place to get advice, vent, etc because we are all dealing with a spouse with dementia so everyone understands.
Gardenan--All good ideas above. Also, check the Sticky above for--Caerivers with spouse Placed (in Nursing Homes, Assisted Living, etc.). It's specifically for sharing with others in the same boat. Have you looked into Medicaid? Again check with an Elder Care Attorney to prootect your assets. As to the isolation/loneliness-- after my DH passed I have been investigating what's available and thnking about what I want to do. I'm not ready to take on a scheduled obligation, but am trying a few new things on a one-shot basis., When I find the things I like, I'll do more, whether volunteeroing or maybe earning. Be patient with yourself. You didn't ge to this spot in a blink, and it will take time to change it.
I so totally understand about the lonliness. Although money is of course an issue, I'm more troubled by the lonliness My husband is still at home and fairly functional, but we have no conversation anymore. We used to talk all the time about everything. The weirdest thing for me is sitting and watching a show on TV and I turn to him and make a comment and he has no idea what I'm talking about. So, we literally sit in silence most of the time. I'm sorry I can't offer any suggestions to help with the lonliness. I too, as someone else said, spend a lot of time on the computer and have recently reconnected with a friend from grade school and we email almost everyday. I was surprised how much this has helped me feel a little less lonely.
I'm new to posting on this site. Actually, this is my first time. I found out about this site about 18 months ago and look in on everyone's comments almost every day. It has been extremely helpful. I had to post today because I noticed two women whose spouses have Lewy Body. So does my husband. He is 75 and I am 66. We are both retired. My DH was diagnosed about 2 years ago with probable Alzheimers and just diagnosed with probable Lewy Body. Our new neurologist is at Columbia Brain Institute so we are comfortable with the Lewy Body diagnosis. My problems are of course so similar to everyone here except that Lewy Body has it's own set of problems at least at the early stages. However, my issues are the same in so many ways, isolation, loss of companionship and conversation with my husband. Am going to attend my first support meeting Monday. I'm hoping that will help. I am so in awe of so many of you on this site. I have no idea how you do it, particularly those of you older than me and with less resources. So glad I finally got the courage this morning to post. Hope that the ladies with Lewy body spouses can share their challenges with me.
Thank you Bama. I have been watching for so long I feel as if I know so many of you. Such diverse backgrounds but all with a common thread unfortunately. I hope I am as strong as you all appear to be, but many days I'm not so sure. I pray for patience every day and my husband has not exhibited the physical problems as yet. It is the constant checking on what day is it, what time is it, don't we have to be somewhere, I don't trust you anymore, and on and on. And of course he's still mad about not being able to drive, and that apparently is also my fault. I'm glad that at least someone understands. Unless you are in this position, you have absolutely no idea how exhausting and draining this disease is.
Welcome Lady golfer. Sorry you need to be here, but it's the greatest place! Do you still play golf? We had to give it up several years ago - really miss it. Others will be along regarding LBD. Meanwhile, have few ((((hugs))))!
Dear gardenan and Lady golfer welcome. I too do not post often. I found this website around 4 years ago and knowing that others are going through similar problems has been helpful.
My dh has familial EOAD and has been diagnosed since he was 50 and I was 49 years old. I am know 58 years old. I too am worried about money. I am currently laid off, my dh would never take out LTC, so money is tight. Although I am close to family and have a number of friends. I have found that only a couple of true friends have stayed really close to both my DH and me. Last weekend I needed a reprieve, so a close friend stayed the weekend. I cannot afford to pay someone. I think back to when my daughter was little and I took turns with a friend trading childcare. I wish I could do the same with dh.
Since I am laid off, I decided to start a knitting group with a few friends. We meet weekly. They are retired and all volunteer in different organizations. So many organizations are relying on the skills of retirees.
gardenan, since you are a retired teacher, you may want to see if there are any opportunities for paid tutoring in your area. Also, since more people are going to school online, you may be able to teach online.
welcome to gardenan, and lady golfer! so nice to hear you made the plunge and posted. its a great relief to have a place to unburden our issues and stress without complications. you find as you progress thru the caregiving related issues, things at times settle down and you will plateau with your spouse. then into another spiral. up/down. its always nice to hear of newcomers and the need that is fulfilled by so many here with so much comfort and support. divvi
Oh, Oh, what a great idea Lizbeth!! I'll watch your DH, then you watch mine!! Just like when we took care of our babies. My DH would absolutely not go to day care with all the others at our wonderful Alzheimer's location. He was just a loner. I ended up paying a company to stay 3 hours a week with him so I could complete needed errands. But, hey! What if they knew of another comparable situation in your area? Just wondering how often this happens, and if two situations could be connected in some way to benefit each other?? Wow! You could introduce your DH to another as a friend, and say once or twice a week, share a few hours together, etc. etc. Each situation would be different, but the idea is a great one. I am going to contact my local Alzheimer's group, and suggest this. Sure would have been an option and a life saver for me, and I'm sure a possibility for others. You are on to something here! See 'gardenan' . the reason we all need to keep posting our thoughts?
Vickie, so nice to hear from you. When I mentioned that I so admire the women, and men, on this site, you are at the top of the list. You always know exactly what to say, in such a calm and soothing manner. I know you lost your son and yet you take the time to reassure others on this site. I do still golf, though very little this past few seasons. My husband wants me near him all the time. I love golf! We have LTC insurance and I am currently in a tug of war with my husband about getting someone in one to two days a week. He thinks he doesn't need anyone and in terms of ADL, he's okay, but Lewy body presents its own challenges. He can be absolutely fine cognitively one day and completely out of it the next hour, or day. It's a guessing game. And unlike alzheimers, the cognitive decline in the early stages go back up to baseline so I look foolish when people see him interacting so well. However, the physical characteristics of alzheimers and/or Parkinson's, which are related to Lewy body are becoming more prominent (shuffling gait, drooped head and runny nose). I'm more concerned about his inability to take his medicines correctly and of course he doesn't want me to hover and check over him, and his not knowing day from night. He also has started thinking that his wife, me, is not me, that I'm another person in the house. So obviously leaving him alone is a worry. OMG, I just realized I have nearly poured my entire heart out here. Sorry to be so long winded, I must be lonelier than I thought! I think I will turn on the early Oscar per-shows. Maybe the gowns and handsome men will keep my mind occupied. Lol
And, divvi and coco and Nikki and MarilynMD, and LFL and Charlotte and so many others, some of whom I see have recently placed their spouses, you have no idea how much your posts have meant to me. I'm so glad I finally decided to post!
Welcome to my website. As I guess you already know, I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
If it appplies to you and your spouse, there are 4 sections for EOAD (early onset AD- now called YOUNG onset)members - two of which focus on the young teens whose parents have EOAD There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Welcome to gardenan and Lady Golfer. I have been here over 4 years and will tell you it has been a wonderful part of my support system. From my experience, things look hopeless in the beginning; but gradually, over the years, we come to terms will all the problems and challenges. What choice do we have, really? I moved my husband Steve about 20 months ago to an ALF and have been glad that I did. It has given me the opportunity and energy to start rebuilding my life, to the extent that I don't have time to be here as much as I used to. But I do check in and think about everyone I've "met" here! Whatever you are going through at the moment, whatever crisis/question/problem, etc., it has probably been discussed on these boards. You are not alone--you have a 24/7 "support group" to help you get through the ordeal of dementia caregiving.
Thanks for the welcome joang and marilyninMD. I agree marilyninMD, what choice do we have. And, joang, when I first found this site through the NY Times series of articles on dementia, I spent every day for weeks reading all of your blogs. I also read almost all of the message boards beginning with the oldest and just kept going until I finished. I have no idea what I would have done without this site. It has truly been my lifeline. I have looked at some of the other forums, but none compare with this site.
Hello Lady Golfer, My wife has Alzheimer's and this site has been a great help over the years I have been on it. Can you sub at a near by school or tutor those needing help for a fee. Also their is on the computer a group called meetup. If you google "meetup" it will give you info on what is going on in your erea. They have 100's of interest listed and you may see one that would interest you. All you have to do is join and add your name to attend. Some do have a small fee but others are free. This may help take your mind off of everything for a short period and you may make some nre friends there share an interest with you.
Welcome Lady Golfer so glad you decided to post and join our community. This website has been my only support system and thanks to the generosity, kindness, understanding of others on this site, I have made it this far in the dementia caregiving journey. I agree, I think the early stages after diagnosis are the most challening because you and your spouse are afraid of what's ahead and you just have no idea what changes and challenges you will have to face. Unfortunately the more you are forced to face the new ones seem to be easier in some ways.