Asking for help: What is realistic to expect?

DORI321

I need to vent, but if you have advice I would appreciate it.  My DH is in ES of EO Alzheimer’s.  He was finally diagnosed late last year, and he is struggling to accept the diagnosis or tell family. He has opened up only to a few family and friends.   I’m struggling with the reality of being a fulltime caretaker and wondering how I can hold up.   We don’t have kids and we live in another state from other family members, so it’s not easy for them to come and support.  I’ve gathered resources about home care but I can’t bring that up to him, because he will get too angry about me planning to desert him and scheming to control his life.  But I want to know what is out there for if/when I need it.

A few close family members know, but it is clear I need more support.   But I’m struggling to know what is realistic to ask of them.  DH gets angry if he thinks anyone is visiting to help him, not just see him.  He insists he does not need a babysitter, but he struggles being alone, and I need a break from the moods and depression.  (And he refuses to go to a doctor as they only deliver bad news.)  My brother is visiting next week to go fishing with him, and I am taking the opportunity to go visit a friend for part of the time.   But DH woke me up early this morning on a rant about how my brother and I schemed to make him go along with our plans.

How is someone else supposed to step in and do this?  My brother can deal with this, but can others who haven’t spent as much time with him?  And is it fair for me to take advantage of them visiting to leave?  I’d like to see family when they visit too, but I’m a prisoner the rest of time.  DH is too, and his sentence is worse and I know that.  Also, I know that DH moderates his behavior with others and I don't expect him to scream at my brother, but who knows what he can't handle one day to the next?

What do you think is realistic to ask of people who can come for only a few days?  How do I prep them about some of the changes they will see?  Any words of advice on how to ask for help?   And any wisdom about how to make it easier for DH?

Ed1937

Gotta go, but I'll handle one question. And is it fair for me to take advantage of them visiting to leave? If they know the reason they are there is to help, and give you a break, you are not taking advantage of them. You are taking advantage of the opportunity of getting away. Do it.

Never do anything, or not do something, because of what other people will think about it. You are the one caregiving, and there will always be someone who does not agree with your methods. You have to do what you think is best. Don't invite unhelpful criticism.

Rescue mom

Every person with dementia exhibits it in such different ways….it’s hard to give advice, but ours sound much alike and I can tell you what I did in similar situations when leaving my DH (who insisted he did not need help) and getting household help.

1. For regular day-to-day things, I told him the help was for me, not for him. He accepted that better. Some people here told PWD they were giving work to a friend down on their luck and needing work, and that worked for them. That did not work at all with my DH, he did not care about others (empathy went early). But he accepted that I needed housework help.

I had to learn to ask for help, either from family or a paid experienced person. Asking is hard, but most caregivers have to do it at some point. It seems pretty common, especially in earlier stages, for PWDs to act better with an “outsider” than with their spouse.

2. He doesn’t like anyone in the house overnight except the kids and a couple of old friends. Even they can’t say “checking on you” or “do you need dinner” etc. Too much like babysitting. They can say they stopped to say hello. But “checking on” or “came to see if you’re OK,” was a huge red flag. They could bring food saying something like “we had too much” or “I want by this place and know you like it, so..” Just not “I’m fixing your dinner.”

3. I cannot imagine, and would never ever advise,  having caregivers or solo helpers who did not know the person has dementia. That seems so dangerous, on many levels. If they know, and will come stay or visit without you, it’s absolutely fair, and a treasure. Accept it, it’s not easy to find.  

But you really have to tell them about his dementia. There will often be some specific incident you did not expect, but the caregiver can handle it. Yes, maybe your DH screams at your brother. But your brother is an adult, knows your DH has a dementia that needs extra consideration, and you trust brother to handle it. 

You may have to decide between seeing visitors together, and grabbing some time for yourself when you can, which you must have and is hard to come by. Caregivers give up a lot. As is often said here, sometimes there is no “good” choice, just some not as bad as others.

4. I used to tell DH about my trips in advance, put on calendar, etc. That was wrong for me, it just gave him more time to worry and agitate. Now I just (usually) tell him the night before that I’m getting up early to go, and will be back “soon.” He is upset when I go, but gets over it very fast. He’s cranky when I get back, but the next day does not remember I was gone

DORI321

Thanks so much for your advice.  I agree with all of it.  I don't think I can use the tactic to tell him the help is for me unless they can lie and say they have a cleaning business.  He loves to hear everyone's life story and will talk their ear off.  It's a small community and he will end up figuring it out.  And your advice to take time when I can and accept when I can't is good advice too.  

It started out as a very bad, stressful day yesterday, but he settled down and we had some good conversations.  He doesn't want to be mean to me.  He just gets so stressed and I am his lifeline for everything.  I'm trying to count my blessings today that I have my health and some resources to be that lifeline until we can use other options.  

Thanks again.  

DORI321

Thanks for this.  I will  ask for help, but also remember that nobody can second guess the hardship and pain that comes with is dreadful disease.

piozam13

That's how I felt in the beginning.  I felt trapped and had no life of my own.  I was miserable dealing with the gradual changes in DH's personality.

I had to change my attitude.  I had to accept.  Mind you - these were not easy - and I never really changed.  But I had to 'make' decisions and plans without consulting him.  

DH used to blame for everything that went wrong and for everything that he didn't like.  I had to ignore what he would say.  It's no longer him - but the disease.

This forum was my 'go to' place.  I got help, lots of info - anticipated what's coming.  You are always welcome here.

  

Joydean

Being a caregiver to your love one is, in my opinion, the hardest thing I have ever done. Guarding your heart, and emotions. When they say things that you know they never would have before, it hurts because you first reaction is that’s my husband saying that, but it’s not! Seeing them change from a strong health person to a helpless child breaks your heart. Your life long partner who now can’t dress their self, and so many other things, your heart just hurts for them. You have to make ever decision about everything, the thing’s you would always discuss together. The loneliness you feel. And when you/he or she, have a good day, you celebrate any small little thing! You help them to the best of your ability, but you accept you can not cure them. You hold on to your memories, keep loving, and for me, I keep praying a lot and thanking God for ever blessing. 

This forum and the wonderful people here have been life savers because of the information and the kindness they share. 

Iris L.

Please familiarize yourself with anosognosia.  It sounds like he may have some degree of awareness, but if you confront him with the realities of dementia, he will resist and become upset.  Learn work-arounds from the members.

Iris

DORI321

This forum is a lifesaver.  I read replies and other posts and see myself in so many lines and it makes me feel less alone and a little less crazy.  I have supportive friends and family but no one knows what it means when someone says "I had to change my attitude.  I had to accept.  Mind you - these were not easy - and I never really changed."

I tell myself that it is the disease and I pray every day to be a better, stronger person.  And then DH says something hurtful and I revert.  But then he comes back for a while and is so kind.  And then I remember again who I am losing.  

Thank you, everyone, for your strength.  

Lills

Long ago and in a galaxy far, far away.... 

I called our local Family Means to ask for help.  It had been a tough month so I finally made the call.  I was so choked up I could hardly talk.  

Long story short:  Family Means sent a volunteer to our home AFTER we had talked about strategies for being with my DH.  When she came, I told DH she was a classmate from graduate school (he knows all of my HS friends so I needed a fiblet.)  When she arrived, I acted very happy to see her.  The 3 of us went for a walk together and chatted.  She stayed an hour.  Next week, she came back and the 3 of us again walked.  DH made cookies for her (with my help, of course.)  The next week, I stayed a while but then went for a half-hour errand.  The next week, I was able to stay away for a longer period.  I worked up to being gone for 2 hours.  The volunteer was amazing and understood dementia! She played Find-a-Word with him and each week that was their connection.  I adored my volunteer.  Then Covid hit and she was no longer able to come.  

The 2 hours aways from DH was a god-send for me.  When I came back home, I was again energized and actually glad to see him again.  I knew he was happy. 

Hope something works for you.  

Paris20

DOR, I agree with the advice that the first step in dealing with what’s ahead is to accept what is happening. This means understanding that rational, common-sense approaches to solving problems related to this disease are often ineffective. What others think becomes irrelevant since our lives can often be consumed by the illness day-to-day. Thinking about family and friends is sometimes a luxury. Besides, in time everyone who cares will know what is going on and your husband will be unable to grasp, let alone discuss, his condition. Therefore, you become the decision-maker, framing DH’s life in a way that is safe and peaceful. Everything else winds up on the back burner. In my experience, depending on family for any sort of regular caregiver respite is unlikely to work, especially if they live far away. Eventually, dementia becomes a 24/7 challenge so it’s wise to gather the information you need to get through this on every level, legal, medical, emotional, etc. This forum is a good place to start.