exhausted/depressed to the point of almost non functional

LizG55

Hi all,

I just shake my head on how life has played out. I am not well myself, and caring for my husband who is in bed and somewhat incontinent. Doesn't know how to shower, wash hands after bathroom stuff, etc. I have to direct for everything or do it.. and we know it's going to get worse.

Then I have pets... one of which has a illness that is apparently contagious to other birds, so I can't rehome her which I would normally never do.. but I'm getting to a point that I cannot keep going, The birds are the only reason I get up in the morning but since she got this virus  from the vets office, it has been a lot of physical work so I won't go into all that.  But suffice to say I am just becoming so exhausted and depressed I can't stand living anymore.

My husband I miss so much I can't stand it. He used to help me because of my own health and now I have lost that and am caregiving him, Then there is the fact that I am SOOOOOO LONELY to talk to him, to be with him to live with him like the normal marriage stuff.  He used to do all the things I could not do since i became unwell and also all the driving. So now I hire people for that but  but I only have one person I can count on, the rest have been bad news. 

I can't afford assisted living for him unless I'm dead... and that's where that is. 

I'm caring for my birds, but she is sick, I'm giving her one of the meds but the other is a really time consuming problem... the vet does not board. I don't know how I am going to do it and not drop dead. The places that do board my birds have been injured from being boarded so that's not an option. I just don't know what to do I want to rest. 

I have a full day as always, never, ever,  a day off.  I don't get to eat dinner till 11 PM at night and could care less but have to eat. I remember my girlfriend going through almost an exact scenerio with caregiving her husband for over a year I don't remember how long it was, had a lot of pets also, and she died two years later. I well remember the conversations. we had and how she was losing herself and just got to a point she couldn't function anymore and died.  I see this happening to me.

I don't know what to do. I don't care anymore if I die. But I need to care for all these loved ones. Don't want to drop dead with them all here in the house. I just physically can't do all this work. I really shouldn't be caregiving for anyone I'm not well enough anymore. 

I feel so much exhaustion, depression, and despair... and I know it's not going to get better.  I've always been a doer and high energy person but I can't do it all myself, I don't even want to put my husband in an ALF at this time because I would miss him too much, he's work but not far gone enough that I'm at that point.

Getting help is a problem too because I've called places already. Ugh, 

Neverends

Hi LizG55, I am so sorry and worried for you. Caring for a LO while being somewhat healthy is bad enough  but your situation  is dire. You must think of yourself  and your well being for both of you. I'm sure your husband would be beside himself if he knew what was going on. You need to.make a decision that would be good for both of you. I know you said an ALF would not work because you would miss him too much. You are circling the drain. It is time for things to change, you can visit him call him or whatever on your terms.  Those facilities  have 24 hour care,he will be safe. Maybe not the words you wanted to hear but you have hit rock bottom. It is time to think about yourself.  It takes an Army  to take care of someone with dementia.  I wouldn't wish it on my worst enemy.  It sucks the life out of you till there's  nothing left  and you become a shell of a person. My mom is on the placement  list  I'm a LTC nurse  with many years experience.  I care for her 24/7 on my own and it sucks.  You are in my thoughts  and prayers.  Sending hope and strength  your way.

eaglemom

Yes, you are totally overwhelmed and exhausted. 

Please call the help line at 800-272-3900 and ask to speak with a care councilor immediately.

Wishing you the best.

eagle

Jo C.

Dearest Liz, I am so truly and deeply sorry for the stress and despair you are feeling.  That is an awful place to find oneself and made even worse by having your own health care issues.  What you are experiencing would be overwhelming for anyone; your body is signaling that it needs some attention, rest and relief.  I am sending a soft warm hug and warmest thoughts your way. 

For urgent support, please do give a call to the Alzheimer's Assn. Helpline at (800) 272-3900.  The helpline is open 24 hours a day, 365 days a year.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wonderfully kind and supportive, often have much information and also often can assist us with our problem solving.  You can call as often as you wish; it is a good place to vent one's feelings and be really heard.

I do not know what city or state you live in, but wonder if you would be willing to have your dear husband placed in respite care just for a week or two in order for you to find some breathing space and recoup some of your physical and mental energy.   That would be an option.

You mention having your husband placed in Assisted Living, but from what has been written, it appears his level of care needs are beyond what an ALF could provide for him.  Memory Care or custodial NH care would seem to be more fitting.

As for the birds.  I wonder if you are not far from a school for Vet Techs.  If so, it may be possible for you to hire a student to come and assist with the necessary work with the birds.  Sometimes actual Vet Techs will take on small jobs on their days off, so that too is an option. Just another idea.

If you do find someone to come in and help with your husband, or if you choose to use respite care, etc.; I so hope you will make an appointment with your primary doctor asap.   It would be good for you to have a checkup and also to address the depression that is causing so much of the exhausting downturn and hopeless feelings.  You too are important and desperately need support.

You know; sometimes our LO actually does better after admission to care. For some, the 24 hour care teams, the increased socialization and the ability to take part in or watch activities and special programs actually is stimulating and in some instances, the Loved One benefits.  I know you do not want to do this, but it would free you to become the loving wife without the 24 hour intense care issues you now face that is not sustainable.  You can be with him on a daily basis if you wish, but can still return home where you can address the birds and rest for yourself.

The following is a lot to read, but I did want to give you some information as you mention the lack of affordability for an alternative living setting for your husband, Medicaid is an option.  The at home spouse is usually permitted to keep all of their own retirement benefits, social security, pensions in one's own name; their own IRAs and 401s in the at home spouses name.  It usually also permits the at home spouse to keep up to over $100,000 in shared savings as well as keeping the house and car.  If one qualifies for Medicaid in that manner, but there is too much income for qualification purposes, but not enough to pay for a facility, that too has its own helpful tool.   Most states have a, "Miller Trust" for Medicaid. In this, the patient's income (not the spouses) is placed in a special Trust  . . . when the bill for the care facility is received each month, the money in the Trust is paid to the facility AND then Medicaid picks up the rest of the shortfall.

Liz, it is good to remember that there is no perfection in all of this; there is only the best you can do under the circumstances with the challenges at hand.

Please do call the Helpline and please do continue to come here to Post often; we are here for you and we really and truly do care.

Another hug and more warm thoughts being sent your way.  

J.

JoseyWales

Liz, I hear your exhaustion. I'm so sorry. You are taking care of so much. It can be so exhausting to know that everyone is counting on you.

Please take care. Please vent here whenever you need to. I'm listening.

Buggsroo

Liz, I really understand where you are at.

I care for two cats as well as my husband with dementia. I am the caregiver for one of my medically challenged cats and my husband. The other day, I broke down and cried because he drives me crazy. I can imagine how exhausted you must feel. I think the advice Jo gave you is spot on. You won’t be any use to your loved ones if you drop dead from exhaustion, caregiving and animal husbandry. 

You need help yourself, please see your doctor and get something to treat the depression. Sending you a virtual hug.

jfkoc

A hug from me too.

Depression is hard/serious/awful and difficult to lessen. Please do not hesitate to call the suicide prevention hotline. I remember doing just that when I hit rock bottom. It did help.

• Call the National Suicide Prevention Lifeline
  1-800-273-8255

LizG55

Neverends

Hi Neverends,

Thank you for your reply. I'm sorry you need to be here..  Where I live the ALF's have memory care. I've already done the rounds with my folks too, so not new to how this works in some ways. Though there are changes over the years.  They also have private homes which are a little less expensive than the "hotel" like ALF's.  Yes, he would be memory care wherever he would be, which is of course more expensive. I still want him home for now.  I'll know when I can no longer have him in the house. I imagine if I feel so lonely now can you imagine how I'll feel without him here? But and it's a big but, depends on how his illness progresses and the same for me.  

Totally agree that it sucks the life out of us. You never know from one minute to the next what to expect. Also true about the shell of a person. I don't even feel like a person anymore just a wind up slave thing that starts a day to function and keeps going as long as I can to try to also get other things done. You should see my desk! I was trying to get some work done there today also... endless... Your mom is in good hands with your experience, but hope your mom gets a good place to stay so you can have a life of your own..

I realize I need to figure out what to do about sustaining my own health and not going more downhill... so that's on my mind also because we can't afford for me to get more ill and not be able to caregive anyone. I take a break late day before I start my night shift as I call it, but, I don't know I might make an appt with my specialist doctor to see what she suggests. 

I make lists.. tomorrow shower, do bedding again, etc. But really, its insane that our society allows for this caregiver burnout/breakdown.. I know there are options but for me some of the options  are not doable. Just trying really hard to get a grip and be more adult about my role/life, and not cry all the time.  The despair part. I have to get myself in a better mindset. Hospice Chaplain said to me the other day, I have to think about what I am willing to give up.... that was food for thought. 

Thank you for the shots in the arm, hope, prayers and good thoughts the same for you also. 

LizG55

Eaglemom, thank you for your caring thoughts and info. I have called them many times in the past they are so helpful. I almost called today because of the despair, but I had so much to do I just wanted to get these things done and finish and had no time for the phone.  But I do know they are there. I actually like them more than Hospice.. even the person that answers the phone always knows the right thing to say.. I don't hesitate to call when I feel so broken, I have  to stop... they are a blessing for sure.

LizG55

Jo C. wrote:

As for the birds.  I wonder if you are not far from a school for Vet Techs.  If so, it may be possible for you to hire a student to come and assist with the necessary work with the birds.  Sometimes actual Vet Techs will take on small jobs on their days off, so that too is an option. Just another idea.

If you do find someone to come in and help with your husband, or if you choose to use respite care, etc.; I so hope you will make an appointment with your primary doctor asap.   It would be good for you to have a checkup and also to address the depression that is causing so much of the exhausting downturn and hopeless feelings.  You too are important and desperately need support.

The following is a lot to read, but I did want to give you some information as you mention the lack of affordability for an alternative living setting for your husband, Medicaid is an option.  The at home spouse is usually permitted to keep all of their own retirement benefits, social security, pensions in one's own name; their own IRAs and 401s in the at home spouses name.  It usually also permits the at home spouse to keep up to over $100,000 in shared savings as well as keeping the house and car.  If one qualifies for Medicaid in that manner, but there is too much income for qualification purposes, but not enough to pay for a facility, that too has its own helpful tool.   Most states have a, "Miller Trust" for Medicaid. In this, the patient's income (not the spouses) is placed in a special Trust  . . . when the bill for the care facility is received each month, the money in the Trust is paid to the facility AND then Medicaid picks up the rest of the shortfall.

Liz, it is good to remember that there is no perfection in all of this; there is only the best you can do under the circumstances with the challenges at hand.

Please do call the Helpline and please do continue to come here to Post often; we are here for you and we really and truly do care.

Another hug and more warm thoughts being sent your way.  

J.

***********

Jo, thank you, I needed that hug. My dad used to give the greatest hug and boy do I miss that he always made me feel safe and comforted. He passed from AD  17 years ago, I can't believe it's that long. I miss him to so much.

The Alz Assoc is super. I was saying in my last message that even the person that answers the phone is comforting and helpful. I keep them in my pocket so to speak so when I feel it's a must do call and always helps. I was going to today but time got away from me with all the jobs.. and when I had 15 minutes to myself, I closed my eyes and rested. 

Also our ALF's so many of them have memory care... so not a shortage of that and they are hungry for customers. He's not nursing home material yet,.. but I never know what's coming next.. though an ALF with memory care would do  But the cost is more than we can afford. They have smaller group homes like regular houses with about 4- 5 people which would be the most affordable option and they are considered good here. But for now he is here. Believe me when I can no longer take care of him, I will have to do something, I would like to find someone to help me that I can rely on not so easy.

I would love to get a vet tech here to help me. I don't think we have any vet tech schools around here... I'll have to research that.. thanks for the idea.. Not easy to find a pet sitter for birds either to help.  My birds are in an aviary so they would be scared as all get go if someone else came in there. I am contemplating the idea of putting them in cages I have here which they hate since they are used to the aviary but maybe for a few days to make the work  much easier for me? it would be like boarding them here instead of someplace else.  I don't have a place to board them elsewhere anymore so strewing on that idea, it would cut down on a lot of work.  I haven't even been able to find someone to come to the house to do their nails.. not exactly a metropolis apparently. 

 I was looking up elder care attorney's earlier other than my own because I think mine has some AD.   to make sure I'm not missing something as far as money goes. It's frustrating that he was a veteran of foreign war on enemy lines as well but they have changed things there.. you have to have less money than we do, So we fall into the hole of not enough to live separate while I'm alive anyway.. not long term. 

You are so right about me needing support. I do have an appt the 3rd week of the month with my NP but I really should call my specialist for my illness because she is booked months in advance. But truly I really just need I think anyway, time to take care of myself, more rest, less stress. less physical labor and also less brain work. I'm fizzling out.   I hate to say it but I think I should put the birds in the nice cages for a few days. I have to clean them of course first but ultimately would give me a lot more time to myself..and less physical labor of cleaning an aviary.  I;'ve been stewing on this idea for a few days.

If  I could put him in a nice ALF he would be fine I'm sure..as far as contented and cared for. 

Can I message you privately tomorrow about the financial part because I was told very different information from what you wrote from the person who I was referred by the Alz Assoc that seems to be the guru on the financials... does not line up with what you're saying that's why I was going to call an attorney which again is money but .. ulling my hair out) .. I know nothing about the Miller trust no one has ever brought that up to me... if it wasn't so late my time would do some research tonight but have to sleep soon. 

I thank you for taking the time to write all you did and address in entirely my issues.  I would like to connect with you to understand the financials a bit better.... blessings to you....

LizG55

Josey... thank you..... I am so tired I am going to have to stop and will answer more messages then.... thank you for replying and caring... it means a lot.... hugs

LizG55

Buggsroo wrote:

Liz, I really understand where you are at.

I care for two cats as well as my husband with dementia. I am the caregiver for one of my medically challenged cats and my husband. The other day, I broke down and cried because he drives me crazy. I can imagine how exhausted you must feel. I think the advice Jo gave you is spot on. You won’t be any use to your loved ones if you drop dead from exhaustion, caregiving and animal husbandry. 

You need help yourself, please see your doctor and get something to treat the depression. Sending you a virtual hug.

Buggs.. thank you. I think the best thing for the depression would be running away   Seriously though, some fresh air, some time for myself to  get grounded you know?  I have had cats too I miss them.  I think you're exhausted too.  I'm so sorry he drives you so cray.. we have days like that here too. Some days are just better than others.  I don't want to drop dead on the floor, but it's a worry.. .and then what becomes of my poor birds? I think my husband would get help faster than the birds.. My neighbor watches my house like a hawk. The pet work is harder than taking care of my husband so far,.. more physically laborious, I just can't keep doing that bending and all that goes with the aviary right now.. so as I mentioned in another message, might put them in cages for a bit to give my body a break... have to do something, If I boarded them which I don't have the option to do they would be in cages of course.

zzzzzz... hugs....

LizG55

jfkoc wrote:

A hug from me too.

Depression is hard/serious/awful and difficult to lessen. Please do not hesitate to call the suicide prevention hotline. I remember doing just that when I hit rock bottom. It did help.

• Call the National Suicide Prevention Lifeline
  1-800-273-8255

Thank you Jf....I can't do myself in, because I have to many souls that need me to care for them. but it's good to have their number...actually if I don't do some changes around here, I won't  have to because I will pass out on the floor, no joke so I really have to think about making the load lighter... like the Chaplain said to me.. what am I willing to give up.... to me that means change.... hugs

LizG55

Moderator wrote:

Dear Liz, 

Thank you for reaching out to us. Walking through this illness with someone you love often brings to the surface a range of emotions - fear, hope, despair, denial. It is normal to feel this way, and to be unsure where to turn.  There is help available, including our 24/7 Helpline at 1-800-272-3900. We have Masters-level dementia experts on staff, also available 24/7, who can talk with you about how you have been feeling and share resources in your area. Please consider giving the Alzheimer’s Association Helpline a call.  We know how hard this can be and we extend this free service to you, hoping to hear from you.

It takes great emotional strength to acknowledge your feelings, and we are here to help you work through them. Please know you are not alone – do not hesitate to reach out for additional support. ****************

Thank you, yes they are the best over there... I do call them from time to time. They have sent me some very valuable info.   

Thank you too for validating my feelings and yes, I'll be talking here for sure, I so need the support...

Comrade

Yes, please call the "help line". There are no better people qualified, and eager to talk to you and help.

The are extraordinary!

800 272-3900

Jo C.

Hello Liz, I am sorry but am not able to do Connections. I have had nearly 200 requests and if I do it for one I must do it for all and there is no way to do that.  If you can tell me what state you are in, I may be able to send you some information regarding qualification criteria for Long Term Medicaid for year 2022; Long Term is different from regular Medicaid.  For your purpose, it is Long Term Medicaid that you would be looking for.

As far as the Miller Trust, it is also called by another name; "Qualified Income Trusts."  Some states may have an additional title, but I do not know what state you are in to find out.

It may be helpful to make some calls to local Veterinarian offices that treat birds. Sometimes they have licensed Vet Techs who do jobs on their days off, other times there may be unlicensed staff who are getting their Tech licenses either online or being at school and who have experience with animals and birds.  If you can find someone like that to assist, it may give you some relief.  Remember; there is no perfection in all of this, just the best that can be done under the circumstances.   If the birds are not so happy with a stranger entering the aviary, as long as the tech can do the job well and safely, it may possibly be worth it to take some of the chores off your hands saving you time and work.

Please do make an appointment with your doctor for yourself, and if you call let your specialist know you are in crisis and need an urgent appointment, you should be able to get one, OR . . . your primary doctor can contact the specialist and inform him/her that there is an urgent need and that would be accommodated.

J.
 

LizG55

Jo C. wrote:

Hi Jo... I can understand why so many people want to talk to you. I live in Florida. Not my favorite place used to live up north US..

A far as vet techs, I called local places and no one would come because of liability.. so I have to look further.. maybe a pet sitting service that does birds. .. or put an ad up. have to keep up with that. I also have to find a reliable driver for my car, not a service that drives me.So these are some calls I need to make this week.

OK I don't know much about Medicaid and didn't know about long term Medicaid being different so anything you can pass my way is a great help. 

Thank you, thank you, thank you for all your help and support 

LizG55

Comrade, I know they are terrific! Thank you for replying to my saga. Right now I'm going to take a nap in between shifts...

jfkoc

Liz...there are several on this forum who have been very helpful with Medicaid. Start a new thread  and be certain to add what state you are in.

Paris20

LizG, I know how you feel. Caregivers can be overwhelmed by the work and the stress of this thankless job that only gets worse. I thought I could care for my husband alone. I ignored the advice of friends and family who told me to get help. I felt like a guilty failure. It got so bad that I wound up in the hospital, my first respite in over five years. I was actually glad that I couldn’t have visitors (because of the pandemic). I finally had some peace and rest. It was a stupid way to learn my lesson. Now I have help at home and I am much better able to care for DH. I also got online counseling from a social worker at my PCP’s office. I freely admit I could have killed myself with my stubborn determination to prove some sort of unfathomable point. Let my story be a cautionary tale.

Jo C.

Liz; good news - Florida does indeed have Miller Trusts also called, Qualified Income Trusts for Long Term Medicaid applicants.

I have copied a link to good information regarding eligibility criteria for Florida Long Term Medicaid that became effective in January 2022.   Look at the column for married couples with only ONE applicant applying for long term care benefits:

https://www.medicaidplanningassistance.org/medicaid-eligibility-florida/

As for the IRA and 401, in only the at home spouses name; it is more complicated.  Be sure to double check that information.  It actually would be a good idea to check with your state Medicaid agency to find out the Florida rules.

 Here is some information on that by state with explanation of terms, etc., just be sure to check as said to ensure the information is up to date.:

https://www.medicaidplanningassistance.org/medicaid-eligibility-401k-ira/

J.

LizG55

Paris20 wrote:

Hi Paris, 

I hope you are alright now. I hear you loud and clear I really do.   I'm trying.  I need to make some calls this week. Apparently, it's a problem getting someone less that 4 days a week here, they don't want "small" jobs...which is what they consider this. I will be having conversations to see what I can do about my situation here.  I can't last at this pace no question there. I've already been on Hospice and almost died a few times before that. My determination is strong and my do diligence, but the body not as forgiving.  I got a lot of good suggestions here and I'll be working on this. I'm trying to stop about 5 PM now and nap for an hour or two. Before it was at 6 PM and I got in about 45 minutes. Now I'm taking it more seriously. That two hour nap today really made a difference and I still got in showering him and such, doing his bedding, taking care of the birds issues and so on....but as you said it only gets worse. Well, when he starts wandering or the bathroom issues are unmanageable for me, I would have no choice but to put him in memory care...I couldn't survive that kind of caregiving, hard enough as it is. But my mind is flooded with ideas and hoping to get somewhere with this so I don't pass out on the floor, injure myself, or something similar. Thanks for writing and your kind warnings   

LizG55

Jo C. wrote:

Liz; good news - Florida does indeed have Miller Trusts also called, Qualified Income Trusts for Long Term Medicaid applicants.

Jo... how many ways can I say Thank you!!!  I appreciate you taking the time and interest. This is very important info. I had no idea about it and my current elder care attorney never said a thing!  I am so appreciative of all your help. This letter and the former.   Again thank you so much. 

Jo C.

Always best to use the guidance of a good Certified Elder Law Attorney; must verify what is shared to ensure you are on the right path.  If you feel the first attorney was not helpful, there is always the option of seeking the advice of another.  To find names of Certified Elder Law Attorneys near where you live and what Certification means, you can go to:  https://nelf.org/   

J.

LizG55

Jo C. wrote:

Always best to use the guidance of a good Certified Elder Law Attorney; must verify what is shared to ensure you are on the right path.  If you feel the first attorney was not helpful, there is always the option of seeking the advice of another.  To find names of Certified Elder Law Attorneys near where you live and what Certification means, you can go to:  https://nelf.org/   

J.

Jo, thank you very much. Yes, I need to talk to another.. you are such a valuable, helpful person. Again, thanks.