Any luck with caregivers?

KathyF1

My DH is in early stage 6. I’ve tried 4 caregivers. Every time he starts off positive with their visits and by the 4th or 5th time he’s agitated that they are there. Follows me everywhere to get away from them. Granted not one of them has done what I expected to bond with him. They start off very conversational etc and that fades. So I’m paying them for nothing, it actually makes things worse. Any ideas of what I should look for in a caregiver that will be skilled enough to make him feel comfortable?

Biggles

I have had the same problems with care givers. They start off quite positive but run out of things to keep my DH interested in and he runs out of being interested in them. I’ve decided not to pay out any more money until I can figure this out. For a past businessman/pilot/yachtsman it’s belittling to put him on a bus trip to a ‘fun lunch’ or dress up day. I have told them he’s not a ‘fun’ person. I don’t think they know what to do with him. He shadow’s me all day; we actually have a lovely time together. We have a number of places that we can go to, picnics, sushi near the river, walking trails in the park, fish & chips at the beach etc but it is just us two and so a little isolating and lonely for me. My DH was getting quite stressed about who is coming today and it was making things worse so it’s now better at the moment without anybody. We go out every day and I even do our daughters floors each week, it’s somewhere directed to go with a specific job, it’s familiar for my DH, we can take our puppy and have a cup of tea and my DH can watch TV it ticks a few boxes! (she does pay me a nominal amount, which generally goes on milkshakes etc) it’s so hard to find some sort of balance with this horrible illness. Good luck.

howhale

I have been fortunate to find two very caring ladies who are caregivers for my wife who is in stage 5-6. What I did find quickly was that I cannot be in the house when they are with her or her attention turns to me only and she wants them gone. They rotate days so only one is here each day but when they arrive, I leave the house for "errands or appointments". We are lucky in that we have an apartment above our garage where I can hang out to rest or do the things that the household needs completed. I do grocery shop or set up appointments during those windows. We found that upon my return, it interrupts "her time" with the caregivers, she becomes suspicious and her mood goes angry quickly. I try to return at the last minute and depart quickly after their arrival. That works much better for us. I also arrange for the nurse or social worker to come during the window when the caregiver is here as the visit goes much better. Otherwise my wife deflects all communication to me, reducing the value of their visit. I communicate with them ahead of time and following the visit.

jfkoc

A thought, maybe they are trying to connect to much and it is over stimulating.

Kat63

My DH is in stage 6 and I have had numerous different caregivers to stay with him to give me some time for me. As I don’t have set hours or time I have had to use agencies and they send someone different each time. I have found my DH does okay as long as I am not gone for more than 2 hours. If I am away any longer he gets very restless with them and tries to get as far away from them as he can. So it is what it is but at least I get some time for me once or twice each week an hour or so at a time.

CampCarol

I had the same issue, paying for caregivers who do nothing. Some were good about his ancillary care (laundry, etc.), but couldn’twouldn’t relate to him. I found that DH was basically hiding in his bed until I returned most of the time. (I have to have somebody because I am also a caregiver for my mom, so I need to get out at least one afternoon a week to take her to Dr appts, errands, etc.) I am now on my 4th agency, and hopefully have finally found somebody that he likes. However she is the opposite of the other aides: she really doesn’t proactively do anything other than try and keep him company. I have to ask every time if she can help change his bed or whatever. Yesterday when I got home, the kitchen was a mess, and he had spilled food on his sweatshirt from lunch. I’ve decided that since he’s so enamored with her, I’ll deal with everything else (although it irritates me since care is expensive). I guess my point is to pick what’s most important to you and go after that, anything else is icing.

KathyF1

Thank you all for your input. If I could just find someone he would stay with while I leave for a couple of hours- but he’s joined at the hip with me. For now I think my best option is to give myself a mental break while he naps. If he’s awake I try to take him somewhere to entertain him. But strangers I think just make him feel insecure. No easy answers with this disease.

Kat63

I have also had more success as of late as I told him the caregiver has applied for med school (which is true) and he wants to work on his people skills so he wants to visit people just to get use to talking with people of different ages etc. My DH seems so much better with him as he doesn’t see him as being a caregiver for him. Just something else that has helped.

SDianeL

the caregiver the VA referred was great. She came one day each week. She just sat and listened to him tell the same stories over and over and help him with the TV remote. I would feed him breakfast and she arrived about noon. I would leave immediately. I would only be gone up to 4 hours max. I didn’t expect her to try to entertain him. He called her “my lady” and looked forward to her coming. She was very calm and soft spoken.

l7pla1w2

So many of these remarks sound so familiar. DW did not take to group programs. After a couple of hours, she wanted to be home with me. I tried a home aide, but after a few visits (on inconsistent days), DW didn't want her around. I think she sensed the aide was sort of a babysitter, which she resented. She wants to feel useful.

DW gets agitated if I'm not with her, so I can't leave her by herself. Her memory is basically zilch, and she will call out for me if I'm out of sight. Of course, she thinks she's just fine and can't understand why I don't leave her alone. So now, I have to take her everywhere I need to go, which is exhausting, and I get no time alone. It's really hard to be a full-time activity director.

My ideal situation would be a group activity where DW thinks she's a volunteer helping the facilitators. Unfortunately, because DW is always nearby, I can't arrange that with a local agency that has a possible program (or, for that matter, discuss anything about her condition with anyone).

annie51

https://alzconnected.org/discussion/comment/229152#Comment_229152

I could have written the last two paragraphs that l7pla1w2 wrote! I haven’t tried groups or caregivers yet because I just can’t get on the phone or get away to check them out or arrange anything. I have one friend who this week came over (on the guise of a spontaneous visit) so I could see how he’d do with me gone for a bit. I was only gone for about 45 minutes. He did ok but seemed a little miffed that I left.
DH loves to show off everything in the house to anyone that comes in so that is what a caregiver will need to patiently listen to. Maybe it’s possible to arrange one via email or text to come up with a “story” so it won’t look like babysitting.

Cindy9519

I recently started using a caregiver in the last month and will report that it takes time for DH to adjust to someone unfamiliar in the house. The person I hired has done a good job but my DH isn’t interested in doing anything. He just wanders or stands around and sometimes sits and watches tv.

It is helpful to get a break so I recommend trying until you find someone who can help you.

White Crane

My DH is now in MC but when he was still home, he had a great caregiver and also a shower aide. This didn't happen overnight though. It took two years and several different caregivers before the right one for him came along. She would bring games or puzzles to play with and they would play rummy. She also brought him little treats and was always cheerful and happy to see him. I hope you can find the right person for your loved one.

l7pla1w2

https://alzconnected.org/discussion/comment/229221#Comment_229221

The caregiver I did have for a few visits did bring puzzles and pictures to color. DW refused to engage. The one activity DW seems to enjoy is cutting up paper.

I have considered hiring someone to stay with DW and not ask the caregiver to do anything specific, with the goal of getting DW accustomed to the idea of someone strange in the house over a period of time. And I would tell DW she doesn't have to engage with the caregiver. But she's smart enough to recognize a babysitter situation.

White Crane

Could you try telling your DW that the caregiver is there to help you out with some things around the house? Maybe she could fix a simple snack and offer it to your wife. Then give your wife some paper and blunt scissor and let her cut some paper or even paper dolls.

Biggles

https://alzconnected.org/discussion/comment/229082#Comment_229082

Hi Kathy my DH is the same if only I could find someone that suited for a couple of hours a week would be wonderful but he is suspicious or just doesn’t like any of the caregivers. I grab my time when he naps but he can’t do anything anymore and follows me everywhere. I’ve been testing him gently with instructions like turn the hose on or off, hold the puppy’s lead, pass me the salt and he misses every instruction. His speach has become so mixed up I can’t understand much of what he says, so I say the sentences that I think he wanted to say. He can no longer talk to our kids on the phone it’s so so sad.

KathyF1

Biggles, ditto. My DH can not follow any instructions. I don’t think he comprehends much any more. And his speech is completely jumbled. Part of what makes him difficult to be around, probably why caregivers find him challenging. You can not understand anything he says because his words are not words. Main problem with caregivers though is that he gets panicky if I’m gone. My mom and sister live nearby. He will stay with them for a couple of hours, I’ll accept their help for now when they can. But long term I do need a caregiver. Praying he’ll change in the future and not feel so insecure if I’m not here. Maybe there is someone out there that knows how to really connect with him.

M5M

we too have been through a couple of “no-go” situations, and have now found a great caregiver. However, I think it works best to have the person come for YOU…to clean the house, rake leaves, help you rearrange a closet….whatever fits the situation. Introduce them to DH then you and caregiver do whatever tasks you can. This took several visits but now DH will engage with caregiver and I can leave some. I still give her a verbal list of tasks to do, in front of DH, and she goes to “ do her work” until he chooses to talk to her. She does of course walk through the room and check on him p.. Of course it is hard to do this if you have forever rotating people.

cdgbdr

I work full time so had to come up with something. I have a companion here 3-4 days a week and DH's sister and brother alternate one day a week. I have occasionally had a friend stay with him when no one else could. He hates having someone here besides family or friends but tolerates it. It's been touchy at times. I don't know how long this will be viable but I want/need to work.