So lonely and exhausted

LizG55

Hi all,

My heart goes out to everyone here. My husband has dementia and I am caring for him. I suppose he is stage 5.  We have no children or family near by.   I have a serious illness myself, but I used to have a lot of great friends who have passed over the last few years because they were ill also... and not youngsters. I miss them so much. I am handling him OK for now though, I do have my moments, especially by days end when I am so exhausted.. I'm trying to keep him out of an ALF but not sure how long I can last. I think mostly, for me, even though, I have to work very hard to maintain the house, the pets and of course my husband, it's the loneliness. I miss having friends, people to share with. My friends used to tell me I was a great friend.. cause it's not just about me or him but about them too. I do have a couple of friends left but it's not the same as the really close ones over 20 years that are gone. I wake up every day feeling like this really is the beginning of the end of my life and not in a good way.  There's nothing to look forward to anymore, and between that and my housebound status for the most part (not because of Covid), it's hard. Just looking for some conversation, and sharing with people who know what it is to live like this... 

jfkoc

Hi Liz...we will be your friend..we know how lonely it is even w/o a disease to deal with. It is easy not to see a light at the end of the tunnel or to find something enjoyable.

I invite you to Lorita porch where we discuss cows, weather, gardens, recipes, pets etc. Her thread is on this forum and is called Just need to talk to my friends.

Lorita

Hi Liz,

 I want to join Judith in telling you we'll be your friends.  We all know what it's like to be alone.  I was the sole caregiver for my husband until he passed away six years ago.  Now, I'm alone - no relatives nearby and, like you, most of my friends have passed away.  I live on a farm/ranch and raise cattle - have dog and cats so they've become my family.  I come to this forum every day to visit with the friends I've made in the last 12+ years.  I'm staying away from people and town except to buy feed for the cattle.  I haven't been to a grocery store since early last March - order things from WM and Amazon.

 Come and sit on the porch with all of us.  We have a good time and, like Judith said, we talk about any and everything.  You're not alone - we're here.

LizG55

Hi Jfkoc..

Thank you so much for your reply and I will surely join.

LizG55

Hi Lorita,

I will join  for sure. I am an animal lover so I'm sure I'll enjoy hearing everyone's stories there. I also haven't been in a store in years and order everything online. There are definitely perks to the internet world. OK see you over there

Cynbar

We already are your friends, because there is an instant bond when you share the stress of caregiving. I find that this disease has really isolated me from friends and family. I still see them (not anywhere near as often as pre-Covid) but it's not the same, our lives are in different places. They are enjoying retirement and travel and golf and boating and eating out, I'm just ......... here, not doing much except caregiving. It gets to me more some days than others, but it is frustrating every single day. As said here so many times, it's a club no one wants to join.

Ed1937

Liz, I'm glad you found us, but wish you didn't need to be here. You will quickly become comfortable here, as we are all in the same boat, and try to help each other the best we can. If you have any questions, feel free to post. For most questions you will get several suggestions. Pick the one(s) that seem best to you. Maybe the best part of the forum is that everyone here understands.

Mint

Liz welcome to the forum.  Glad you found us.

My mom is the one with dementia.  I’m single and have been very isolated for the past year.

Have learned many things here that have made life a little easier from many different people.

I like to spend time sitting on the porch too, feel free to come sit there awhile.

CStrope

Hi Liz, I'm right there with ya!  I live in a small rural community, and I really have no local friends I can trust or confide in.  My best friends are a small group of 5 from high school, that are scattered all around the country.  I'm thankful everyday that despite the miles between us, we are still close.  I am the youngest of 7, but don't live near any family.  My parents are both gone, and I miss them dearly.

My DH was just diagnosed over the past few months, but I now admit the symptoms have been there for at least a couple of years. 

I agree....sometimes (actually a lot of times), I'm just so sad.  I know there are many more years ahead of caregiving for my DH.  I wonder how I'll handle it, will I be able to.  Everyone always says a good support system is the most important thing, and I wonder if I'll be able to find that, because I don't think I have it now.  Already, I feel so alone.  My DH is the only man I've ever loved, and we've been married for 34 years.  I feel like I have so much living yet to do, but don't foresee any "living" in my future. I already sense such a change in our relationship.

Hopefully we can find the support and conversation we need through the others on these forums.  I already find myself looking forward to reading the posts each night.

LizG55

Hi Cynbar,

I have actually used that expression too about not wanting to join "that" club.  I'm just now at 1:15 AM sitting down. I work a good 14 hour day and then go to sleep near 4 AM. I am not healthy myself and he used to help me. Well, for all of us we are not youngsters so it's a tough job. My husband is so far good in the sense of being nice. He's compliant so that's good but he remembers nothing. Can seem fine to someone over the phone and then ask him after what they said and he doesn't know.  I remember when my dad was still out of state and I spoke to him ion the phone.. never could I have imagined what was happening to him until I saw him, It's hard to be the "everything" person. We need 5 people to be "us".  Social life is really online with e-mails, chat or something like that because even if anyone did care I have almost no time to talk to anyone. It's hard to keep up with the pets too.  But then there is the sadness of it all. I used to love to travel (forgetting Covid) before my health got compromised so it really is being a shut in and a full fore caregiver. I feel for you and all of us who work like dogs and really come last when we need to take care of ourselves too but how? Anyway.. thank you for saying hello  

Gig Harbor

One thing that might help is to post your location somewhere in your intro page. I used my location in my name and had three ladies reach out within a month. We started meeting once a month then once a week for a couple of hours. Our group has grown to about 14 women and one man. As husbands have died the ladies have stayed on to help those of us still in the trenches. We do a Zoom meeting once a week but as restaurants open we will meet there or in a park. I text a lot with one lady and we also call each other especially if one of us is driving. I am not sure how one might go about making a friend or two that you could actually talk to but I think it is so amazing. My friends I have had for years just don’t understand where I am at. It takes someone in our situation to understand. I will say that if you ever want to talk send me a message and we can work it out. I am in Washington state so there is a time difference but no big deal. My husband sounds like yours. He is still functional but has zero memory for history or new events. It is so lonely. I do make plans for my future and am doing more exercising so that I will be able to do some of those things.

LizG55

Thank you Ed. I am not new to dementia, my dad had AD very badly and he suffered. He came to me from another state and I ended up trying to manage caregiving for both my parents with the "help" of caregivers. Unfortunately, the caregivers were not very good which was more stressful. It might have gotten better now but was horrible then.  I worked the long days too for them but feel like I was so much younger and stronger, It's hard to now watch what my father suffered happen to my husband! I've spoken to the AZ Assoc a few times and they also had some suggestions... but I appreciate you saying so because sometimes I forgot too with everything on my mind!! So one day at a time and glad to finally get here..

LizG55

Thank you Sayra... I will. Don't know that I have the energy tonight but most definitely looking forward. I'm sorry you are so isolated too

LizG55

Hi CStrope...

I can really hear how you are having a very difficult time. I'm so sorry for everything you're enduring.  I too know my husband has been progressing over a long period of time... this is not an overnight illness. My dad was the shock because I had no experience with Dementia of any kind so didn't know the illness symptoms.  So by the time he came to me here from another state he was so ill already. Both my parents are gone also, but he died 16 years ago. I had to think about it, I can't believe it's that long ago. I have never been the same since. He was my "hero" guy as I am an only child. I was very close to him,..so I feel for you, I understand. Not a day goes but I don't miss him.. and yes cry over him not being here anymore still. 

My husband I miss too even though he's  "here". I don't know what tomorrow will bring.. and you don't either... but I think it's good to plan but unwise to project to the best of our ability, I have to call the VA and get some things done there but how he will be at any given moment tomorrow is an unknown so doesn't pay to over think it so to speak. Take it as it comes.

The sadness is very pervasive. Kind of eats you up alive. I am also very sad its like this dark cloud that never goes away and you know your life has changed forever...as you watch and deal with this situation.  Maybe if we weren't sad there would be something wrong with us.. after all, it is sad. 

I've had to learn not to think ahead so much, Try to stay more in the present moment and just take what you can that brings you a little reprieve. If it's going out for a walk or watching nature. It doesn't "cure" the sadness but it helps you feel more alive and a part of the world.  I don't have time for either but I will go outside on my patio sometimes just for a few minutes and take some deep breaths try to center myself.

I think a strong support system is a must and I have a good feeling I will find that here . We all need each other.. to be our extended family of sorts.You really have to be there to understand what is is to be in this position. 

Sending you hugs and support. 

LizG55

Hi Gig...

Thanks for reaching out. I've never been to Washington state but I know it's beautiful from pictures. I'm on the east coast. I am unable to go out to meetings but possibly could do a late  afternoon zoom occasionally. it's a nice idea.I have actually reached out through the Nextdoor app  and am making some local contacts there but not for AD.. just for interests. However, that could also be an idea. ..and I want to thank you too for offering for me to contact you.

Yeah it's wild how the friends I do have left are so clueless.  They ask me to do them favors because they have health stuff too.. they have no idea that I don't really have much time to spare but I do still need that human connection,.so I thank the heavens for the internet.  I will keep this idea in mind and thank you for bringing it up.. something to consider.

As far as my husband to me he seems like he's just going senile. He's does not so far have the disease like my dad did. He doesn't remember his SS # or his ID tags from being in the marines which he knew by heart too. He's very frail...and can barely walk now. His sense of time is off too. He used to be Mr fix it and now can't do anything. Like the brain is just siphoned out.

LizG55

Lorita...

I just wanted to add.. that I love the sound of your set up... the farm and the animals. It's true they are your family as my pets are mine .... but I miss people too. I'm sorry you went through what you did but glad you found solace here..I am too exhausted to write more but will go to the  porch another time. Thank you for saying I am not alone  

BethL

Liz, There was a white cockatiel at a vet's office I used in the past. He sat up by the receptionist and he would say, "P- Pet Hospital, can I help you?"  That was a hoot!

LizG55

Beth,,,,, Ha! The males can really talk when you teach them. Every so often a female can too. I taught my male a bunch of songs and every so often he starts talking... but I don't always know what he's saying  LOL.

jane8851

LizG55 I love your picture of your birdies. I have a 26yr old Jardine parrot named Naked Beaker because he plucked out most of his feathers when he was young. He's a love bug and keeps me sane while caring for my husband with dementia.

LizG55

Hi Jane,,

Has Naked Beaker been with you since the beginning? The pic on the profile is not my current birds, I have 3 cockatiels, used to have lovebirds years ago.  Two females, one male.  They keep me somewhat same too so I know what you mean.  My husband as dementia also but with him right now it's more about not remembering anything after you tell him and having simple conversations, He can't make up his meds anymore or work the remotes stuff like that, I don't think he knows his SS #. I was shocked when I asked him his ID tag numbers from when he was in the Marines and doesn't remember that either. he can barely walk so basically that's where he is. 

How advanced is your husband and how are you coping? 

jane8851

Yes, I bought Beaker when he was an egg! I wanted a Jardine and when eggs became available I bought one from the bird breeder and took him home when he hatched. I hand fed him and I'm his mom. I used to raise cockatiels and canaries but gave it up because I never knew where the babies went and if they were loved. I had a wonderful African Grey too but she's passed now. Naked Beaker is the "last man standing". I wouldn't trade him for the world. My husband can't remember our address (we've lived here 45 yrs) and asks the same question every five minutes. He can work the remote but has trouble with the phone. He's angry all the time. It's heartbreaking both for the patient and the caregiver. I'm so glad I found this forum, I was lonely and isolated but now I know I'm not alone.

LizG55

Hi Jane...

Loved your story about Beaker. From an egg, yes you sure are the mom. That would be a problem for me too with selling the babies.  I would worry. As a matter of fact, I acquired the 2 girls as a fluke.  I was looking for a male companion for my 5 year old male.  So I went here and there to try and find one in my area not so easy. So that one breeder took forever to get the DNA back on each bird... and they were all girls. So I told her no. Then she contacted me a few weeks later and laid it on heavy that she couldn't find a home for them and so on. Well, she played me like a smooth violin, but since it was I think three weeks, I do believe she couldn't find a home that she was happy with. I used to do rescue work with cats and waterfowl in NY so a sucker I am. I took them! Well not being all that experienced I didn't expect one of them to lay every 3 months!  They were all in the same aviary. So I built another aviary in the house where they really can't hear each other and the girls moved in there. But I think after 8 months of no eggs, it's time for a visit. She (his mate) really wants to be a mom and she would be a good one.. so she keeps laying. The other one whos a cinnamon white face is not quite as healthy as the other who is like an acrobat.. but she's doing alright.  I don't let the eggs hatch, I use the dummy eggs so far. 

I'm sorry your African Grey passed on, but I'm so glad you and Beaker have each other

I bet you my husband can't remember our address either.. I will ask him tomorrow.  I'm sorry yours is so angry that's rough. I so far have not had to deal with that.  Isn't there something he can take.. do you do any supplements?

It is a heartbreak. My dad had agitated dementia and what he went through was like a knife in my heart, I will never make peace with the suffering he endured.  Now my husband but not agitated pretty. quiet.. I have to say for now because there's no telling what will be.

 The whole thing is very rough.  I'm going to attach a pic of my current birds for you....

LizG55

Jane I attached the wrong photo but could not remove the middle one you'll see.. hope you enjoy the pics

jane8851

Hi Liz, your birds are beautiful. Cockatiels are my favorite bird of all I've had. My husband is great with Naked Beaker. Since we no longer have any other pets in the house Naked Beaker is out of his cage with us all day. Either on my shoulder or playing on his tree stand, or "helping" us with chores. One of my husband's dementia things is that he talks constantly. I've noticed he now talks mostly to the bird instead of me. Which is good for hubby and the bird. They enjoy each others company and Naked Beaker is a good listener. The parrot can talk but seems to have forgotten most of what he used to say when he was younger. Maybe parrots develop senility issues as they age? Maybe they both sense a kinship with their memory issues, and have developed a deeper bond because of it. I've attached a few pix of my bald guy below.

jane8851

Liz I forgot to add that I also did rescue and wildlife rehab in NY. Mostly wild birds that I cared for and released and parrots that needed new forever homes. Once when Merlin my grey was alive and I had a crow in the other room that I was rehabbing, she said "Get him out. He stinks!"

LizG55

Hi Jane...

Thank you for the pictures of Beaker and  Merlin. That is really funny about the get him out of here he sinks remark LOL. 

Solly is the one who does the talking and he did talk more than he does now but when he feels like it he gets on a roll with the whistling, talking...and singing.  I taught him a bunch of my fathers favorite songs and he knows them. They're really so smart. 

It's very good your husband and bird communicate. I like that .  My husband keeps forgetting I have birds much less their names. But even 7 years ago he couldn't remember the cats names when they  were still alive.. so the dementia as we all know is very insidious. 

So what do you feed him? I've only had the cockatiels and lovebirds. I didn't feed them fresh chop at the start so they won't bother with it.. but I do hang vegetables in the aviary and that seems to work. The girls seem to like the new playgym I made for them. First time I ever made one myself. My husband used to do them.

I so miss NY. We were on a canal and had ducks, geese, swans.. I fed everything.. was my place of paradise. I don't care for FL, I can't feed anything or we get rodents.. apparently they live in the palms. So I'm really always in the house between the birds and my husband.. it's a full work day into the night anyway. Even when I wake up in a bad mood, the birds seem to wake up happy and that's so nice. .

I'm glad to have met you on here  

jane8851

Hi Liz, glad to have met you too! This forum gives me something to look forward to after my husband goes to bed and I have some "me" time. Feeding Beaker has become my husband's job since he got sick. He chops up sweet potatoes and pineapple and adds pomegranate every day for Beaker's fresh food. We also feed him Higgins Safflower gold seed and Zupreem pellets. He gets walnuts, pistachios, and pine nuts as treats. Of course I double check to make sure the parrot is being fed correctly but so far my husband is doing a great job. It makes him feel good about himself to have a daily job that he can complete and do well at. At supper time Beaker eat whatever we're having and he has his own little plate at the table. In the pix he's having chicken, green beans, and sweet potatoes.

ladyzetta

O My!    Jane.  I love that pix of Beaker having dinner with the both of you. How old is he? 

jane8851

26yrs old. He looks pretty ragged but we love him just as he is. He plucked out most of his feathers repeatedly because he had liver disease which made him itchy. We treated the disease but the damage to the feather follicles was permanent.

LizG55

Hi Jane...

I think that's great your husband and Beaker are helping each other!  The fact that he can get his food together is great. Gives him something important to do and the bond is also such a plus. I know my husband feels useless because he can't do the things he used to (and most things) but i give him jobs to do, however he could not care for the birds. 

Sounds like a good diet to me! ..and I loved the pic of the plate where he can eat with you both. It's just precious! Did or do you give him milk thistle for the liver?

feathers or not he is loveable and that's all there is to it and I'm sure spoiled .

I used to have to give so many meds and supplements to one of my cockatiels who was born apparently with a heart defect. She was my perfect bird. How I loved her. She lived two and a half years and died in my hand. Ugh. She also had high uric acid levels and I did give her all the appropriate  things as far as I knew and the avian vet, but we didn't win the fight.  Solly had gotten his name because I picked her up first and fell immediately in love in a pet shop.. so  named her Dolly... I didn't know what to name him so I called him Solly. 

I plan on letting the girls in his aviary in a few weeks. I have to get some work done in the room where the girls are... so I better be prepared for eggs again. They don't lay the greatest eggs despite a good diet and extra calcium but working on that. He will be sooooo excited!  He misses her so much so it will be about 9 month they have been apart by the time I bring her back in. I needed to give her a rest and recuperate from all those clutches. She was laying every 3 months.

JudyMorrowMaloney

Liz where do you live? It would be nice to connect with someone in Massachusetts. Are you anywhere near Mass? Even if you are not I would like to join in with the others and be friends.