Having a really hard time

s128

16 years ago my DH took a heart attack and it took EMT's 7 minutes and 3 attempts at shocking his heart to get my DH breathing on his own.  At the time neurologist said short term memory loss, Since he needed double bypass, I just let the short term memory loss go.  I was worried about bypass.  Thought memory would come back, the first few years I noticed a slight change in his memory. Then he was put on a very high dose of lipitor.  We were at my son's house playing cards, and when it was his turn to deal, he seemed to not know what to do or where he was.  Took him to doctor and he was able to draw clock, etc.  Doctor decreased lipitor and he was better.  But we started to notice his memory was getting worse.  Took him to a neurologist who said he had mild cognitive memory disorder and put him on memantine and aricept.  That was about 7 years ago.  In the last couple of years his memory seems to be declining at what I think is a very fast rate.  And I am ashamed to admit that I think it's my fault, because I have no patience.  My feeling is why should he do anything, when I wait on him hand and foot.  I think I have come to terms with it, but there are days when I feel so overwhelmed, that if I ask him to do something and he doesn't, I just say give it to me I'll do it.  When we were caring for my mother with dementia, I had all kinds of patience, I also had my sisters and DH for support.  Now its just me.  I finally said to my sons, we need help around the house, and they come.  My DH is very dependent on me.  If I get up to do something he follows me.  Or when I am cleaning he will stand and watch me.  I'm sorry, it drives me crazy.  Or he will pace. I said if you helped a little it would give you something to do.  I am trying to make the outside of our house as care free as possible.  I will say this is easy, we can do this, but it usually turns into a disaster.  It took us two hours to change the florescent light bulb in the bathroom.  We go out, to do something, and he waits for me to start and I honestly can't do it alone.  We have started hiring people to do things, but that in itself is frustrating because they don't come.  I got him a medic alert bracelet, because when we go out he leaves his wallet, money and keys home.  I keep telling him to take them, asking if he has his mask.  As far as personal hygiene thank goodness he is pretty good.  Some days he goes into the bathroom to take a shower, shaves but doesn't shower,  the other day I told him he hadn't taken a shower because I didn't hear the water running, he went in 3 times, shaved and then finally took a shower.  If I ask him to get soda or something out of refrigerator he doesn't.  Forgot what he went in for.  I pray every day that I don't make him feel useless, and so far it's not working that well.  I'll just say never mind I'll get it.  I got the big digital clock with day, date and time on it.  Got one for living room, one for  bedroom, so as soon as he woke up he would know the day and date. I don't think he looks at it.  He has a cell phone, I tried to get him to tell it to call me, we were having some success, but then we didn't do it, now he doesn't seem to grasp the concept.  I could go on and on, with things like this.  I had a procedure done on my veins, and I don't know if the fact that it has been bothering me is affecting him. He does help me get the elastic stockings on.  I wont leave him alone for more than an hour, to get my haircut.  When weather is nice we walk a little each day. His brother died in January, and his sister is not doing well either.  My sons told me to let him process it in his own way.  I was going to support group meetings, but they stopped with covid.   He eats well, but sometimes if I put things on the table he will just look at it,  so I started making his plate or sandwich.  I'm sorry if this sound all about me, when it should be all about DH.   Well thanks for listening.

M1

Hi s128.  Sorry you're having such a hard time.  It's difficult to realize that you really no longer have a partner who can "lift the other end of the board."  Very hard to realize that all those routine expectations--that he can help, that he knows what to do---are no longer valid.  You have to get your mind around the fact that it's not that he won't, he can't do what you are expecting him to do.

Sounds like he probably had a big brain hit at the time of the heart attack if he was out for as long as you say.  That was enough to start the problem, and who knows what other insults have accumulated since then.  But certainly, a lot of what you describe is very typical dementia behavior--the "shadowing"/following you around, the not being able to follow directions.  You might want to look up tam cummings' Stages of dementia (others are good at posting links, I'm not) to get a sense of where he is, but he sounds like at least stage 4 if not more.

Glad you posted, there are always folks here to listen and empathize.  It's not easy.  You will probably be less frustrated if you get your expectations adjusted.  But there's huge loss in that.

jfkoc

s128....Here it is just fine for it to be "all about me". 

Being responsible for a  person with dementia is hard. It is tiring, frustrating, sad, angering etc. All of us here understand.

I think acceptance, patience and education are the keys to this challenge. The life you were used to living is no longer and it is hard to make the changes that need to be made. We know all too well about that too.

We are always here to listen.

sandwichone123

In our lives and in our homes, we're all here for our loved ones. But here, on the board, we're here for the caregiver. Not that we don't support each other in our care for our LO, but we're here to support each other. It's ok to come here and talk about your own challenges and ask for your own support, because that's what we do.

 You're in a difficult stage where your dh is still functional enough that you look to him for support, but not functional enough to supply it. It's hard to transition from partner to caregiver, and it's a loss so there's mourning involved.

Many people have spouses with little patience, but it doesn't cause brain damage. Brain illness causes damage, and a lack of patience causes guilt. They're not the same, but they can feel similar. I don't see anything in your post that indicates that your spouse feels useless, just that you feel bad about the situation and are blaming yourself. I'd like to point out that you are not the cause of the problem, you're just coping with it as well as you can, which is what we're all doing.

The other things you mention: lack of initiative, not noticing/caring about time, not remembering processes or to call you--those are part of the progression of this disease, not something that can really be fixed, just coped with.

Diane

terei

Everything you are describing is due to dementia.   I think you may not have totally accepted that your H’s brain is simply unable to work properly anymore.  No matter how many times you may remind him of something, it is not going to stick any more. 

I think being a caregiver 24/7, which is what you are, is extremely stressful + some people can cope with it better than others.    

You need help + you need to be able to get away from your H.       You will have to give up the idea that you are partners any longer + if you want to retain your sanity, I would discontinue trying to get him to help you with any request or project. Instruct him what to do + he may do it, but dont assume he will.     If your sons cannot give you the time you need for yourself + for help, I would be looking for a local handyman + possibly someone to come in to keep him occupied.   

His apathy about anything that is affecting you (and possibly even himself) is also part of the disease.  You are right, he no longer has the capability to empathize with your feelings.  

I hope you can come to terms with what is happening + try to get some relief for yourself, on a daily basis, preferably.    And, no, it is not all about him.  Your life + quality of living is MORE important than his.   Without you or someone else, he is near helpless.  You still have many years to hopefully enjoy with friends + family.  Please do not give up on having a life separate from his.  You deserve it + what is happening to him is not your fault.  All you can do is make the best of it + try not to let it consume you.

banpaeng

Ms. S128, Ms Terie is giving you the right answer.  This is not a game of patience, it is endurance to see who dies first.  I have watched video and read till I am blue in the face.  Other than saying nice words, it don't help.  They will tell you to tell little fibs.    I lie till I am blue in the face again to try to keep my wife happy.  I hate myself for that.  I hate lies.  However you do what you must to endure.

They tell you to accept.  What BS.  You are lying to yourself if you say that.  I don't even accept this crap.  My goal is take the best care of my wife till one of us gives up and passes.

I have been doing this since 2013.  She is getting worse and so am I.  I took care of my son for five years of Cancer.  Helped my sister take care of our Mom till she passed.

I am thinking of nursing home but do not think I can do that.

Truly this is an endurance test.  I still remember what the Nurse at the VA told me 5 years ago. "Put her in a home before she puts you in the ground".  It was great advice, I did not listen.

s128

Thank you

s128

Thank you, I really do try.  I hate myself when I say something that I know I shouldn't have because it's not his fault.  I'm constantly apologizing.  The new neurologist we saw, said she could tell we have a close relationship, which made me feel better

s128

Thank you so much.

s128

Thank you. I signed him up with the VA, because I don't know what the future holds.  Because of covid, we only met with Dr. virtually.  He said he could probably get us a few hours help, which I was all for.  But my husband, was a very bold, definitely no way.  My sons said bring someone in and stay here with them and then eventually leave for a few minutes, which I agree with totally, but in my mind the best way to do it is bring it up, like this is why we need help. My son stopped in to take him to lunch one day and he wouldn't go. Because I wasn't.

s128

Thank you and God Bless you.

banpaeng

You say your husband is a Veteran, I will offer up some advice.  You will need three advocates.

Don't know what state you are in, but most states  have a group that advocates for the Vet.

At the nearest VA facility they will have a patient advocate.

Find an Elder Care Lawyer..  Not an everyday Lawyer but one that deals with Elder Care, Protecting Assets , and dealing with VA.  

If you get all three, you should be able to move forward.  As I am unable to post links (I do not know why) Google is your friend.

jfkoc

Bringing in help is a great idea but please think twice before you come anywhere near the real reason.

I asked my husband if the thought we could bring someone in to help her because she had been laid off. He thought it was a good idea....he saw himself as helping not as needing help.

CStrope

@Diane W.  this statement you made really hit home for me....thank you!

You're in a difficult stage where your dh is still functional enough that you look to him for support, but not functional enough to supply it.

John_inFlorida

You can sure say that again. Its hard when someone is still very functionable, but not able to do so many things

s128

Thank you, I like that idea.

s128

We have been to elder care lawyer.  When this first started.  I said to DH, I don't want to do to our kids what my mother did to us.  After my father passed, she said she was going to put the house in mine and my sisters names.  She never did and if we brought it up she looked like we were trying to steal the house from her.  Finally she got to the point that she needed round the clock care and we decided we wouldn't put her in a home.  I remember one Sunday morning sitting in her kitchen with my sisters and figuring out how much longer her money would last.  Thank goodness I got in touch with the senior citizen agency and they walked me thru what I had to do.   One of the worse things we ever did.  I am hopeful that our next schedule appoint for my husband at the VA won't be virtual.

Thank you

s128

Thank you, I'm finding that out the hard way.  Where he used to help me, I just do things by myself.  I'm finding that it is much easier for me.  I wish he had a friend like he was to one of our neighbors, taking him out and doing things.