Thanks to all who have written to me

Lyn Bear

I wrote on this message board for the first time a couple of weeks ago.  I am not sure what I hoped for (it was recommended to me by my therapist).  Over the past week, I have received nine wonderful postings from those of you out there who are struggling alone with the care of a loved one.  It is so good not to be ALL ALONE anymore, even though I don't know you personally.  How I would love to sit around a table with a cup of coffee and talk to you!!  My husband was diagnosed "officially" by testing just 18 months ago, but I have seen the symptoms building for at least 6 years.  We were living in an independent living apartment when things began to get bad, here in a life care community.  Had I only known, I would never have come here, as they have neither memory care nor elder care offerings.  Do you all find that your husband (or the person you're caring for) wants to be with you constantly?  This has gone on through 2 years of the pandemic when we were 'locked down' in our apartment for nearly 2 years, meals delivered, only allowed out for medical appointments.  Our neighbors who lived alone would say (by phone, we couldn't visit): "You are so lucky to have your husband with you."  However, as he was going downhill, the pressure was terrible.

In order to keep him from nursing home or locked unit, I agreed to move to assisted living to be with him.  He is getting very little attention from staff and I am exhausted and depressed.  I have no social life and I find the longer I am in this situation, the less I want to go out and the more reclusive I become.  My husband can still function OK in most things with me at his side, but he cannot go out to eat anymore as he can't focus on the menu, orders something I know he doesn't want, and then doesn't eat it.  He can't self-start with anything, and I have to remind him of what to do next (but then he can still do it).  Part of my being scared all the time is that I know what is coming down the road with him.  I hear from many of you that it's so hard to get help, and that's what I've found.  You pay and pay for everything and then end up on Medicaid, when you thought you had plenty of money for your retirement.

I am SO grateful for this place to vent.  People who haven't dealt with this don't seem to understand how important it is to have someone to listen.  For all those of you out there are doing this alone, as I am, I say thank you every day for you.  Please keep in touch.

Kay82

I can understand how you feel. I have been with my mother for 9 months now. For various reasons, I have had unreliable help from my siblings. I have spent hours on the phone trying to find respite care only to discover there is no company or organization in our county or will service our county.  Finally her doctor says he can make the referral for a visiting nurse. 

You and your husband are in my prayers. 

Ci2Ci

Caring for someone with dementia is quite a challenge, especially when you have little to no support/help. I commend you for doing it thus far. No one (no one on this board, at least) will judge you negatively when you decide that it is too much for you to bear and/or that his needs are greater than what can be met in a home environment. Many of us will err in waiting too long, for our sake and theirs.

I pray that you will make the best decisions when faced with them. Sending love & light.

sunnydove

Oh Lyn! I wish we really could share that cup of coffee together! Sounds like heaven! 

It's absolutely insane and unacceptable what a complete lack of help there is for caregivers. I have had so many say to me I just need to look and when I tell them it doesn't exist, they do a little looking on their own only to find out there is NOTHING. Well, unless you're well off. But I have had to stop working to care for Mom. Living off my retirement that is also being chunked away at by the economy I just can't afford respite. Not to mention even if I could, Mom would not cope well. When I finally had to stop working it was because she would cry when I left for work and refuse to eat or go to bed. Like your loved one, she wants to be with me all the time. The only time I get to myself is after I put her to bed when I get a few minutes by myself to cry in my own room. I don't even have mornings because I have to crawl into bed with her in the wee hours so she won't wake up alone and scared. If I even try to take a phone call she will start tugging on my sleeve like a toddler and show me things to get my attention back. It's cute, but it's exhausting. And while I no longer expect help or support from family, it would nice to still at least feel like we exist. No one checks on us or asks how she's doing (much less me.) Just a heartbreaking situation all around. 

There have been so many times I have thought I can't do it if it gets worse. But at every stage and progression of the disease I am able to step up and do what needs to be done. And you will too. I remember thinking what am I going to do when she becomes incontinent? And here I am, cleaning up pee and poo and finding poo hidden away or tracked all around after being stepped in. It's insult to injury. But I read a post on LicketyGlitz's blog about how she and her sister were going through some of her mom's things after she passed away and they found an old dried up turd and thought, "awwwwwww. one of Mom's turds!" with sentimentality. Your husband is so incredibly lucky to have you and when this is all over, you will have no regrets and you will cherish the time you had with him too - even the poo. 

Hang in there! You are a hero in my eyes for all you do! You clearly have a big and loving heart.

SunnyMae

Hi,
It is good that you are able to vent and find support here. I know that life care communities vary widely in their offerings, services, and contracts but it seems like there should be a higher level of support for you in AL. 

I would recommend thoroughly reviewing your contract and if you need to or have questions (and have the monetary resources) have a certified elder lawyer review as well to make sure you are not missing out on any available assistance.  

There must be a resident health nurse and/or social worker there who might be able to recommend services? Depending on what state you reside in they may need to create a plan of care and could include more assistance. Are there activities the community provides that you and your husband could do together and you might (eventually) be able to duck out for some private or quiet time for yourself. 

I hope some of this is helpful.

~~SM

Ci2Ci

sunnydove wrote:

It's absolutely insane and unacceptable what a complete lack of help there is for caregivers. ... But I have had to stop working to care for Mom. Living off my retirement that is also being chunked away at by the economy I just can't afford respite. 

Hang in there! You are a hero in my eyes for all you do! You clearly have a big and loving heart.

YOU are a hero, too, SunnyDove! 

sunnydove

Ci2Ci - you have no idea how much that means to me! It's amazing how far a little appreciation and acknowledgement can go. I obviously don't do it for that reason, but it's validating and reassuring for to be recognized for trying your hardest. Thank you! And.... right back atcha!