I was dumbfounded by what DH’s aide said-what do you think

Soul Mate

A few months back my DH’s aide said she couldn’t see how I could do what I do.  I was taken back because she is only here 12 hours a week while I am here 24/7.  She is half my age.  Apparently 4 hours, 3 days a week is a struggle.  I have just been keeping on keeping on.

 

My husband is one of those that must be on the go (walking around or riding in the car) or is restless and complains non-stop.  So when the aide started last October her task was just to keep him on the go. No restrictions as to where– so they go on scenic drives to parks or do her shopping/errands, etc.  Then back for lunch.  (He is type 1 diabetic and stage 3 kidney so needs a special diet.)  And then they walk around our area, which gives her the ability to get in all her daily “fitness steps”.  While they are gone I try to get bills, household chores and the like done. When he starts getting antsy after she leaves, then I take him out in the car to do my shopping and other errands.  

 

Last October when the aide started DH was just beginning to go into Stage 5.  By January I was having to bath and dress him.  Around that time he asked to wear depends, worrying that he might have an accident – but so far none has occurred because of frequent, planned toilet stops. Over that time his gait has declined and he developed visual spatial problems.

 

Now the aide is suggesting that it is time for him to go to memory care.  Just want to check in with you all and get your take.  Was thinking that wouldn’t be necessary until stage 6.

 

First he has vascular dementia, as did his father.  When his father was at this stage all his father did was pace back and forth in the apartment (I’m trying to avoid that by giving him outings). My MIL had to put him in an institution (back then no memory care places).  He lived another four years.  Luckily he was considered a ward of the state of Florida and she did not have to pay for his care.

 

We do have some savings – just enough to not qualify for help.  I will go bankrupt if I have to pay for four years in memory care.  I’m trying to delay as long as I can, so I will have a future that’s worth looking forward to. 

 

Also I have tried day care facilities, but he was terribly upset that he couldn’t eat what the others were eating because of the diabetic and low-salt diet.  I think that he’d have the same upset in memory care.

 

Also because of the need to be active, I need to find a facility that has large inside/outside space that he can wander around. 

Faith,Hope,Love

Hi Soul Mate.  I think that decision is yours not hers.  If you are doing ok handling his care giving than you should keep on doing what you're doing.  I'm curious if she's experienced in dementia care.

Ed1937

I agree that the decision  is yours to make. You know how this is affecting you; she doesn't. I always thought it was time when my wife would get better care in a facility than I could provide at home. I wish you luck. Every caregiver is different, and has different tolerances.

You mentioned going bankrupt. What state are you in? Have you seen a CELA (certified elder law attorney)? If not, that's something you really need to do so you know where you stand in multiple areas.

jmlarue

I absolutely agree with Ed. I just consulted our CELA today to discuss the possibility that DH could be placed in a Medicaid facility by the VA (not my choice), He was able to reassure me that I will not be left impoverished if that is the case. Mind you, when everything is said and done, I will have invested $9,000 in expert legal advice, but I'm confident that many more thousands of my assets are now protected for me and my future. I'll be responsible for pulling together all the relevant documents (like a year's worth of bank statements), but the CELA will handle the entire Medicaid process from application to contesting any unfavorable decisions. I can now go forward without fear, knowing I have a powerful advocate working for me.

Pat6177

Soul Mate, I have not yet placed my DH so I can’t speak from personal experience. But my opinion from reading this forum is that the time for placement is determined by a combination of the status of the PWD and the condition of the caregiver. This is something only you can assess. 

I agree with the others about seeing a CELA to make sure you have your ducks lined up. 

Again, from reading on this site, people say that the progress of vascular dementia is a stair step pattern meaning that there are sudden drops in abilities followed by a plateau. Similar to the drop last winter perhaps. I would suggest that after talking with a CELA, you start looking at MCFs and maybe even put him on a waiting list or two. According to the folks on the forum here, if your DH’s name comes up and you are not ready, you can just postpone. But if things suddenly progress, you don’t want to be scrambling in a crisis.

Finally, I would also suggest that you start thinking about how strictly he needs to adhere to a special diet. It may work today but as the dementia progresses, it will get harder. I know there can be serious ramifications to not adhering to one’s diet with Type 1 diabetes. But your DH may start sneaking food and refusing food and you’ll need to adjust accordingly. Maybe you can drop the dietary restrictions for the kidney disease and just pay attention to the diabetic diet.

Quilting brings calm

How many times in life has a person said to another ‘ I don’t know how you do it’? 

 I think the caregiver is telling you something important for your own health. Just reading what you wrote, she is acknowledging that caregiving for a person with dementia is hard for even short lengths is time.   She’s not saying she can’t do it.  She is implying that it must be very hard on you ( at your age, compared to hers) and all the time( rather than a few days a week).  That’s all true.  It’s the very reason for this forum’s existence. 

It’s possible that you aren’t managing your own mental, physical, emotional)  health well  because you are concentrating on his.  That may be something she notices as an objective party.  It may be why she mentioned memory care.  She doesn’t know your financial situation so she may not understand that you don’t consider it feasible. 

Next time she makes similar comments- ask her why she made it.

Soul Mate

First, as Bill2001 so aptly put it:  The Calvary is Not Coming.  Most of us are going to have to go it alone. 

Thankfully in our day and age, we have the ability to receive “smoke signals” from others via this forum.   Thank you all for your comments and different perspectives to my post.  I really appreciate it.  And thanks to all the many other posters from whom I’ve learned so much.

 

FAITH, HOPE, LOVE

The aide is training to become a geriatric nurse.  I know that she understands the medical side but I’m sure she doesn’t understand the financial side.  

 

ED

About the CELA, I have already had that meeting (prompted by all the many, many promptings on this site. He just happened to have a satellite office just a couple of miles from me.  He also is a financial advisor and he has a tax preparer on board for his clients that need one. (one stop shopping, so to speak).  

 

The meeting was short.  We already had a DPOA, so no worries there.  The CELA did give me a tip on managing some small investments.  

 

There was no need to discuss keeping a house as an asset as we moved to senior living six years ago.  At the time my husband was sneaking around doing electrical and plumbing projects and I was trying to head off possible disasters.  Also I thought if we moved early on he would become familiar with the surroundings.  But that knowledge faded over time and he no longer knows how to navigate the building, the hallway outside our door and now has trouble finding his way around the apartment.  In my next life, I’ll just stay put in the house.

 

JMLARIUE

 Thanks for all the info you post about VA.  The VA social worker encouraged me to apply for secondary compensation for by husband’s diabetes (Vietnam) this summer due to his long-term retinopathy and last October diagnosis of stage 3 kidney disease.  Turns out the low salt diet really worked for him and he is back in the normal range.  So there probably isn’t going to be any secondary compensation at this time. 

 

When my husband dies, no more pension.  Our savings were meant to support me should he die first.  Now they will go to fund memory care. I think you are very fortunate and wise to find a way to spend a little money to gain some more.

 

PAT 6177

As I said above, the salt free diet has vastly improved the kidneys.  However, just these last few days a new problem has arisen.  His short-term memory must be going because he forgets having eaten and ten minutes after a meal he is asking for food again.  My work around is to save his salad for those moments or to give him some really low carb foods like watermelon.  His sugar has also been running high, so I may also have to increase insulin levels

 

FAITH HOPE LOVE

The aide is studying to become a geriatric nurse.  Working for us, she is learning first-hand about dementia and diabetes.   She is also a kind and very empathetic people person (much like all of you on this forum).  

 

QUILTING BRINGS CALM

I think you are right.  I think I may be like the frog in the pot –   I have just been adapting to the changes and didn’t notice the pot is now boiling.  I’ve made appointments with doctors and facilities and moving forward.  Thanks for bringing the calm.  

 

 

 

 

AnnMB

I'm back here after loosing my DH last week. The decision is yours as to when you put him into MC or LTC. Having respite is wonderful but remember being the 24/7 primary care giver can be exhausting. Not only are you running your household, you are taking care of DH and making sure he is remaining calm and happy. During those 12 hours of respite try to get some time to rest - nap, read a book, watch TV, etc.

DH's aide made a legit comment. Many of my friends said the same to me. I kept DH home until a month before he passed. It was called "love". As long as I was able to take care of him, get 12 hours a week to get groceries, do bills, and have a bit of time for me I was coping, I was taking care of him and burnt out but I was willing to continue to do it. You sound like you are doing the same.

I spent a lot of time thinking about finances when we, as a family, decided that DH needed to be in LTC. I made lists, talked to the care coordinator, called my extended benefits, talked to my financial advisor at the bank, and made budgets coming out my ears. I had to live on 60% of our income and he would have gotten 40% which meant he would have been subsidized. But, it meant I would be living a frugal life until he passed. I was prepared for that as I wanted the best for him. I have no regrets with the decisions I made and never had to implement. I was prepared.

I am thinking of you as you forge ahead making your decisions. Be kind to yourself during this journey. You will know when the time comes to put him into MC or LTC. It will feel right in your heart.