When to seek help

frkrygow

This is my first post. Please pardon any gaffes.

DW has been slowly slipping into dementia for at least a decade. She and I are both strong and otherwise healthy - as in, able to hike six miles, bicycle 30+  miles, kayak, etc.

Family members are an hour away in three different directions. We see at least some of them weekly but they can't be much support.

DW has made small mistakes in daily life for a long time, but now they are much more frequent and basic - as in, "Where's the yogurt?" In the refrigerator. "Where's the refrigerator?" In the kitchen. "The kitchen..."  Through _that_ doorway.  

 I now must do all the cooking, laundry, and watch carefully or help with any cleaning, gardening, choosing clothing, etc. I must turn on the TV, answer all phone calls, find the missing gloves, be sure tea and not oatmeal goes into the teacup.

Family has recommended hiring a caregiver. (Once they are available! I tried through Care.com just before I needed a brief outpatient procedure, but there were none available.) Family says it would allow me to get away for a few hours break. But it seems hard to do when we're managing. She enjoys being with me, and it seems good for her when we do things together, even cleaning, so she can be active. Otherwise she just sits. And it seems like we'd be hiring a "friend," so compatibility must be important, including even shared interests. (Our interests are a bit unusual.)

She knows she has "short term memory problems" as she puts it. But I've not yet said "You have dementia. We need help." It seems like a big step that will crush her.

How long do people wait before hiring help? Are there milestones? And how would we choose whom to hire?

Iris L.

frkrygow wrote:

She knows she has "short term memory problems" as she puts it. But I've not yet said "You have dementia. We need help." It seems like a big step that will crush her.

Welcome.  Don't say this to her.  Read about anosognosia.  You will have to learn work-arounds which you will learn from the members.  They know what to do. 

 Iris L.

Joe C.

frkrygow, Welcome and sorry you needed to seek out our community, there are many great people here with valuable advice on any subject. My advice is to start a caregiver as soon as possible. In our case we have had the same caregiver for 4 years. When I originally suggested a caregiver DW opposed anyone coming into our home. She was still active but losing the ability to cook, use the TV remote, etc. She has AD with anosognosia so she has never recognized her disease. When I needed surgery 4 years ago I used a “fiblet”, telling her my doctor required a CNA to come to help with my recovery. The agency I hired the caregiver through was aware of my fiblet and everyone played along. Since the caregiver was coming to help me DW did not oppose her being in the house. In a few weeks DW bonded with the caregiver and she became just DW’s friend. Initially the caregiver twice a week for 2 hours, now her regular schedule is 30 hours per week and sometimes more if I have stuff going on. I never would have made it this far in our journey without our caregiver, she has been a Godsend.

60 falcon

Hi, you'll get lots of advice and support here.

I think I waited too long to look for help. I'm basically burnt out now.  A few months ago I hit the point where I finally accepted the fact that I need help.  I was afraid my wife wouldn't tolerate help, I wanted to save money, and I guess I just thought I could do it all.  I agree with Joe, start looking for help sooner than later.

I couldn't find in-home help where I live but I did find adult daycare.  It's less than ideal for me, being that it's an hour away, but my wife seems to like it.  I can't say that I feel like I get much of a break yet, but maybe I will eventually.

As far as telling her about having dementia, some folks tell their loved ones and others don't.  Each situation is unique.  My wife knows and has from the very beginning.  

Doityourselfer

We are all at different paces of hiring help.  I haven't yet, but only I will know when/if it's time.  For example, when my husband becomes immobile that will be a milestone.

LadyTexan

My DH has early onset Alzheimer's disease. He is 58. I should have brought help in sooner. DH was in the hospital in May. I was informed by his care team that DH needed 24/7 monitoring. That is more than one person can effectively do IMHO. 

The following are just a few examples which may indicate it is time to bring in help:

1. If your loved one cannot independently recognize an emergency and effectively call for help.
2. If your loved one cannot safely be left alone due to dangerous activities such as attempting to use the stove when it is no longer safe, or wandering without the ability to safely return home. 
3. If you are burned out to the point that you are not an effective caregiver.
4. If you want to be proactive and prevent burnout.

Currently I have a caregiver for 4 hours per week. If I could financially afford to bring in the caregiver for more hours I definitely would. While the caregiver is here I am able to grocery shop and run errands or just go to the park.

jfkoc

As soon as you want time away from the house alone and/or you would rather spend time with your wife rather than cleaning, cooking, doing laundry.

The approach is seriously important. You need the help or they need work...never say it is for your wife.

my2goldens

LadyTexan wrote:

1. If your loved one cannot independently recognize an emergency and effectively call for help.
2. If your loved one cannot safely be left alone due to dangerous activities such as attempting to use the stove when it is no longer safe, or wandering without the ability to safely return home. 
3. If you are burned out to the point that you are not an effective caregiver.
4. If you want to be proactive and prevent burnout.

1.   Yes, this is where we are.

2. Yes, this is where we are

3. Yes, this is where I am

4. I'm already at burnout. 

David J

The question of getting help: when, what, how much…a constant question in the world of dementia care!  I had hired caregiver help several hours per week for a few years. Mostly it was respite for me. There was some bonding between DW and the caregivers, but most care still fell to me. When I needed a minor surgical procedure, I arranged a respite stay for DW. She did really well in the MCF, but her condition worsened and she ended up in the hospital twice. I think she would have ended up there regardless of  whether she was at home or at MCF. The doctors’ notes today describe her as having severe dementia and unaware of her surroundings. 

I waited too long to get her into long term care. I kept thinking I had the ability to care for her and that my love for her trumped the care level of hired caregivers. I was wrong. I can’t do it all.  Get help earlier rather than later. Consider placement earlier rather than later.  Get ahead of it. 

Gig Harbor

I went on FB local job site and said I was looking for someone to be a companion for my husband from 11-3. I said the major thing would be to go for walks with him. I told my husband we had been chosen to help out with the local college to train women getting back into the workforce. It has been a total success. He loves having 4 solid hours of attention. They walk and then come back and have lunch with him. Sometimes they watch TV or else listen to music. They have offered to clean but I really want him to have the attention. He enjoys his ladies and I always come home in a good mood. Right now it works because he needs no physical care. By finding them on Facebook I was able to see their posts and get an idea of their lifestyles. I pay them in cash at the end of each day.

Jeff86

Nearly all caregivers wait too long, rather than act too soon, to get help.

For me, the decision was easy.  My DW became afraid of being alone.  I was in the first year of a three year employment contract, a condition of a business sale, and couldn’t stop working to take care of my DW.  So I hired an aide to cover weekdays, Monday to Friday, 9 am to 6 pm.  

Most importantly, and luckily, my DW accepted the aide virtually right away—because my DW was fearful, and because the aide was so wonderful.  

That was 3 1/2 years ago.  My DW loves the aide, rightly so, as she provides wonderful care.  This has also enabled me to continue to work, which I want to do, while knowing my DW is in great hands.  I am sure, too, I am a better and more patient caregiver for having this help.  And maybe, too, I would find it harder to keep my DW at home if I didn’t have this help.