Still Working and Husband is Losing It

Starwish2022

Hi All,

I’m new to this group. I’m 62 and work from home at a pretty demanding job. My husband is almost 80 and has moderate cognitive impairment but he’s getting worse. It’s happening fast. He is also Greek and insists on drinking ouzo every day. I’m feeling very alone as I don’t know anyone in my situation. 

Thanks for listening!

M

David J

Starwish, There are so many different situations on this forum. I hope that the ouzo doesn't interfere with your care of your LO. Does your PCP or your husband’s PCP understand what is going on?  It isn’t unusual in relationships that span decades that there are issues. Good luck with this and maybe the ouzo can calm your husband and comfort him.

Starwish2022

Thank you so much for getting back to me! His PCP tells him to cut down on the drinking as alcohol is bad for the brain but he doesn’t or cannot listen. Every day it seems something crazier happens. 

Yesterday he interrupted me 3 times during work when I was at meetings to tell me there we people downstairs. But there wasn’t. 

Etc. 

Take care 

jmlarue

It sounds like your DH is having hallucinations. There are medications that can help with some of these problem behaviors, but the typical PCP is not really well versed on prescribing these specialty anti-psychotic drugs. I would suggest that you ask for a referral to a geriatric psychiatrist specialist for your DH. If these hallucinations are frightening for him, be sure to say that and that you think he needs to be seen urgently. As your husbands dementia progresses, you will find that you need to rely on the specialist more and more. Our PCP docs are generalists and don't usually have any special training in the management of dementia.

Gig Harbor

Aside from the other suggestions you have received is it possible for you to have a caregiver come in to stay with your husband while you work? Can you possibly work away from home? It is like having a full time job and trying to take care of a toddler - you just can’t give enough attention to your job. There might be daycare available in your area but that would take quite a bit of work to get him there. If you can’t hide from him in your home I would suggest trying to rent a room on a daily basis to work from and leave him with a caregiver. Good luck and welcome to this forum.

Bill_2001

Hi Starwish2022 -

We have much in common, only that the genders are opposite. I am caring for my dear wife, who is older than me and suffering from dementia. I am also still working. Blessings to you - I know exactly how hard it is!

Adult Day Care has been a godsend for me. I work from home 1 or 2 days per week, and the other days, I drop off my dear wife at an Adult Day Care Center. It helps both of us break up the week and seems to be just the right balance between keeping her home with me and getting her (and me) out of the house. Hopefully there is an Adult Day Care center near you. I found one that is on the way to and from work. It also helps to talk to your boss (if you have not already) and let them know what is going on. You may be surprised at the cooperation you receive.

A while back, I posted the article below to this forum, to help new caregivers see what is coming. It is quite frank, and somewhat dark. But I believe if you know what someone else has discovered, it can help you.

I have re-posted my article below for you.

# # #

New Caregivers – the Journey Ahead

If you are a new caregiver of your dear spouse, and they have dementia, this may be the journey that lies ahead of you.

I have chosen to sit down and carefully craft this post, for the benefit of caregivers that are just beginning this journey. You don’t yet realize the size of the storm that is coming your way, and I want you to be more prepared than I have been. It is game changer.

I have resolved to do everything I possibly can to take care of my dear wife myself. That means that I am trying my best to avoid placing her into a facility for as long as possible, if at all. The choices we have in this country for placement – be broke or go broke – are shameful. Planning on relying on Medicare in retirement? Think again. Dementia creates the need for “custodial care,” which (surprise!) is not covered.

If you are indeed a newer caregiver, by all means call a Certified Elder Law Attorney and get your affairs in order, right now. Do it while your spouse can understand and sign forms. This is the single most important thing you can do. They will gather all the information about your situation and guide you through the process of preparing legal papers. Spend the money. Do it now.

Here are some pain points that I have discovered, and that I want to share with newer caregivers.

1 - Caregiving sneaks up on you. By the time you have joined this board, you are already deep into the quagmire of caregiving. Think back a year or two, and the things you could still do together. Now here you are, reading posts on a message board run by the Alzheimer’s Association. It will only get worse, slowly draining more and more of your time and energy. You will start letting things go that you once enjoyed, one by one. Hobbies, friends, family functions, will be dropped by necessity a little at a time. Until that one day, which I have arrived at, when your life is nothing but caregiving (and in my case, working full time too). Caregiving is a cruel trap with no reward.

2 – Say goodbye to most of your friends and family. No one wants to take care of someone with dementia because there is no reward/fun in it. Remember the fun times you and your dear spouse had with your friends and family? Now, you can’t go out like you used to. Your spouse embarrasses everybody. Someone has to change your spouse’s diaper. Do you really think your friends are going to help you? So, you end up doing what I am doing. You stay home again tonight, and watch your world get smaller and smaller. Your friends and family are tired of hearing about it; you have become insufferable.

3 – Days turn into years. Before you know it, five years of your life have vanished. Your dear spouse does not understand your sacrifice, and they don’t CARE. Too bad for you, as you turn the pages of a calendar, getting older yourself, while your dear spouse slowly disappears into the ether. This was supposed to be the best time of your lives together. This is the time of life you once looked forward to. Dementia came along and destroyed it. If you are early in this journey, you are still in denial. Prepare for losing the best years of your life. This is going to take a very, very long time. This just goes on, day after day after day after day after day after day after day after day after day after day. Every day is the same. Birthdays, holidays, long weekends, and anniversaries become just another day to slog through caregiving.

4 – You are the sole memory retrieval system. Remember all those precious memories that you and your dear spouse spent a lifetime creating? You had better, because they no longer remember them. The places you went together, the things you did, the fun you had. It’s all over, and your dear spouse remembers none of it. You are alone in your memories. In fact, you can just make stuff up now, because it no longer matters. Your spouse does not remember, and no one else cares. Your lifetime with your spouse exists only in your mind. Was any of it real? This is the stuff science-fiction horror movies are made of.

5 – Heartbreak like you have never experienced. Do you remember getting your heart broken in your youth? Some girl (or guy) lost interest in you, said something really mean, or just dumped you for no reason. That is CHILD’S PLAY compared to getting your heart ripped out piece-by-piece over a period of years. Vascular dementia is killing my dear wife, one day at a time, over a period of years. Each day, she grows colder, more distant, more of a stranger, than the day before. She no longer makes me a surprise dinner, brings me flowers, or makes love to me. Brace yourself for sustained emotional pain. If my dear wife did not have dementia, what she is doing would be considered emotional abuse.

6 – Help costs a fortune. If you get to point where you need real, tangible help with your dear spouse, be prepared to pony up thousands of dollars. Sure, you will get many “thoughts and prayers,” and people will visit occasionally. You will get a lot of advice, and tactics for managing your spouse and your own stress levels. But what about REAL HELP? Someone to watch your spouse while you get away for a while? Someone to take your spouse to the bathroom and change their diaper? Someone to cook dinner for both of you? Or someone to babysit your spouse with dementia, while you just get some SLEEP for a change? Prepare to pay. Your friends and family used to enjoy spending time with you as a couple, doing things together, and helping each other out. But your spouse is no longer an enjoyable person. Who wants to deal with nonsense conversations? Who wants to deal with dirty diapers? NO ONE. The reality is that I must spend half my salary on adult day care so that I can continue working. My dear wife’s retired friends and family are too busy traveling and spending time with their grandchildren. Suddenly, no one has time for her since she has dementia. Everyone offers to help, but no one does. PREPARE FOR THAT.

7 – Nights and weekends are the worst. The days you used to look forward to, you now dread. My favorite time of the week now is Monday morning. What does that tell you about my life? As your spouse progresses into dementia, prepare for your nights to be a lonely nightmare. You are sleeping next to a stranger. Your marriage is over. There is no cuddling, no caressing, no lovemaking, no passion. The nights are long, silent, and lonely. And that is on a good night. A bad night comes with combativeness and incontinence. Do you remember when midnight was the magic hour with your dear spouse? Those days are gone for good. Midnight now comes with either complete silence and indifference, or another change of the sheets after she has soiled her diaper yet again. And I have to get up in the morning, take her to daycare, and get to work. NIGHTS ARE HORRIBLE. And weekends just compound this silence and loneliness across two entire days. I look forward to Monday morning when I can drop my dear wife off at daycare and spend the next eight hours pretending that my life is not over.

8 - Vascular Dementia is Fatal. It is slowly killing my dear wife. There is no easy way to say it. And it is slowly killing me too. There is nothing to look forward to. Not today, this evening, this weekend, next month, or next year. Just more of the same. More tired nights. More loneliness. More nasty diapers. More desertion by friends and family. I am putting forth superhero-like powers into caregiving, but I know what the final outcome will be. Death. In the meantime, there are no more vacations, no more outings with friends, no more passion, no more conversations, no more laughter, no more anything. I thank the Lord every day for my job. It is the only thing in my life that still feels normal. My dear wife’s dementia is killing both of us. 

Starwish2022

Hi and thank you for your note. I will take your suggestion. It seems like all I do is make doctors appointments and take my DH to them!  But you are right.

Starwish2022

Hi and thank you. I’m trying to find someone to come sometimes from care.com website. I have someone but she’s not available for a few weeks. Will be following up!

Starwish2022

Wow. Your note and the posting you shared are really useful. I do have to contact an attorney. I have a list but have been putting it off. There’s always so much to do. Thank you again.

Ed1937

Starwish2022 wrote: I do have to contact an attorney. I have a list but have been putting it off. There’s always so much to do. 

Welcome to the forum. As you can see from the posts above, you can get a lot of good suggestions here, as well as being understood with whatever emotions you are dealing with. 

Please do not keep putting off seeing a CELA. This is a very important thing to have taken care of early in the disease. It's never too early, but the time comes when it is too late, and you don't know when that time is.