Home health care

ME44

I'm 70 and in reasonably good health, some issues that are well managed. DW is 67, about 3 years or so in. I would say moderate stages. A fair amount of urinary incontinence, needs assistance with bathing and dressing. We have an adult daughter who's doing all she can to help us. I cook breakfast every day, and either our daughter brings meal prep or I cook. I'm getting some increasing suggestions that I bring in a home health care aide. Other than maybe a little respite care I'm not sure that we have a great need. I'm a little tired, but I'm retired and feel like we're mostly managing ok. I guess my questions are: when did you decide to bring someone in? How frequently did they come and what did their task list look like?

SDianeL

respite care is important for you to recharge. Even a few hours per week helps. The VA provided respite help for my DH. She came once a week for 4 hours. Some agencies have a minimum number of hours. She was a CNA and couldn’t give him his meds. She mainly sat and listened to him and made sure he was safe. I ran errands, went to doctors appts, went to a book store or library, etc. She would have done light housekeeping, help with bathing and fix light lunch but we didn’t need that. The agency will provide a list of what they do and decide what level of care you need. Having help would benefit you and your daughter. I highly recommend it if you can afford it and if your DW will accept it. I got my husband to accept it by telling him it was for me. I needed the help.

Michele P

I am agreeing with what others have posted and want to add another comment regarding the assistance from your daughter. A family member and I assisted with care for years with a relative with Alzheimer’s. For years, we requested that her husband bring in help to take the burden off all of us. As the disease progressed, more and more was asked and expected of us. It became more than any of us could handle. We worked full time with demanding jobs. Bring someone in now. You are fortunate to have your daughter’s assistance. You don’t want to burden her to the point of burn out and exhaustion.

Nancy13

Hi. I'm new to this, living with my husband newly diagnosed. Is there a chat here?

SDianeL

https://alzconnected.org/discussion/comment/253189#Comment_253189

welcome. Sorry about your husband’s diagnosis. You can post a new topic by clicking the plus sign and putting in a subject and typing a question or comment. There are different sections for caring for spouse or partner, general topics, caring for a parent, etc.

Michele P

https://alzconnected.org/discussion/comment/252580#Comment_252580

I love that you told him that the help was for you. I am filing that! Your posts are so helpful. I am so sorry for your loss. The knowledge you bring to us is invaluable.

SDianeL

https://alzconnected.org/discussion/comment/253498#Comment_253498

thank you. 💜

howhale

If you can handle the expense or the resource is available for any amount of hours, take advantage. You say that you are a little tired. It won't get better. In short order you will be a LOT tired and may find it hard to ever recover from that. The time another caregiver can take with your loved one to allow you to recharge, see the bright sunshine outside in peace, eat a quiet meal, take it and use it for your self. In regards to what do you ask of the caregiver, I struggled with what instructions to provide our caregivers also. Many home health care services promote the household chores with which they can help, laundry, meal prep, etc. I decided my instruction would be simple, make every minute you spend with my dear wife the best minute possible for her right now. Her days were miserable, her life a shambles, use the time to do whatever is appropriate to give her the best time you can in whatever way that is. There are the obvious tasks for caring for her, e.g. meals, safety, hygiene, etc. I was clear that I did not have them in our home to do those routine household tasks. They were there solely to provide what was needed to make the time with my wife the best is can be for that moment. It was critical that I find caregivers who could work in our world of constant change, adaptation, flexibility and the highs and lows. Some had to be let go, great people and caregivers for the physically impaired but not for this nightmare. I finally found caregivers who were superheroes and added safety, care, loving and enjoyment to my wife's otherwise miserable existence. Make every minute you are here the very best minute in my wife's day! When I would stay out of sight and listen and hear laughter, my wife engaging to whatever extent she could, smiling, even dancing, I knew I had given the correct direction to the caregiver.

persevere

Hey there ME44, welcome to the club. As a husband caring for my wife of 40 years I am just going to offer a few tips that I have been wanting to put out there for husbands. A shower hose is a must if you don’t have one. For washing hair and private parts. I always shower with her. It’s just easier that way. Keep her hair shorter rather than longer. Easier to manage and put in a shower cap. They make bra straps for bra straps - lol. My wife’s bra straps were always falling off her shoulders. It was suggested to me by a woman I had coming in a couple days a week to get these simple straps that go across the back and keep the main straps up. Did you know that depends actually tear along the sides so you don’t have to slip them down the legs if you’re using them. Slip on pants and shorts. As for when to get help, if you’re having to watch her 24/7 even a couple times a week for 3 or 4 hours if you want to work in the yard or garage or run an errand. Care.com is a good website as well as word of mouth.

jennybeeay

https://alzconnected.org/discussion/comment/253867#Comment_253867

Hello persevere,

You have so much knowledge to share and it is so helpful to those who are coming to grips with what lies ahead. I am beginning to explore home care options as my DH gets more and more dependent on me. He is in the early stages of Alzheimer’s. He has two children who have busy lives and are not that connected to him for a variety of reasons. I feel the pressure to manage his care but I know I am just one person. I want to keep him at home so I am thinking about how to start to integrate someone in to our life so I have some time to take care of myself and to work. I looked at Care.com. Can you tell me more about how you used that? It looks like they advise people on a monthly basis and I assume they help to match you with caregivers. Would you be willing to share your experience?

Thank you very much.

M5M

Hi Jenny, I'm sure perservere will be back with some more good suggestions, I will add my thoughts oh finding a helper in the meantime. People "new to the game" often say "I'm doing OK, we don't need any help now…"…..but in reality, finding the right care helper often takes a while, and when the "need" is there, it is often in a crisis situation when you don't think as well and then make a poor choice. Many of us are not used to having "help" in our homes, certainly not someone to handle the often intimate details that come with caregiving. So I would start with thinking how you will approach finding the right person. Make a list of questions you want to have answered in an interview-write them down- and also make a list of what you want them to do. Then, when you identify your person, allow some time for yourself and your LO to get used to each other. Most people find it works best to tell your LO that the help is for you, not for the person with dementia. I stayed at home with the helper and DH for several weeks. We chatted, sat on the patio, occasionally the 3 of us took a short walk. The helper watched as I made breakfast, coffee, how I cleaned the kitchen, and she started handling some of those tasks regularly. Gradually it became clear that this person was a good choice, and I started leaving some, after several weeks. DH did not-still does not "like " for me to leave, but he now will chat with the helper when I am gone and he is well cared for by someone who is relatively comfortable in our space.

Good luck!

M5M

persevere

https://alzconnected.org/discussion/comment/259038#Comment_259038

Hi Jenny, just seeing your comment. Looks like you got some good advice from others already. Both Howhale and M5M have very good approaches. Care.com requires you to subscribe monthly or yearly in order to actually reach out and message prospective caregivers. It’s fairly cheap. All of their caregivers undergo background checks. Also, it’s quite possible that you already know people or people who know people in your same situation. Word of mouth is just as effective. In my case the things that are important to me is that they are trustworthy, caring, dependable, flexible, and don’t mind doing a few chores if that’s what I need. My DW is at the point where it’s not easy to entertain her. Just keeping her on an even keel and making her feel safe is of the utmost importance. Once you find someone start very slowly. Like others said, let them observe how you interact and how you like things done. If your husband is in the early stages then hopefully he can participate in trying to make this work. I think one of your challenges will be that most caregivers are female. I’ve heard this can be a bit more difficult for husbands than wives with dementia. Feel free to message me if you’d like but I think all of the inputs you’re getting are very good. It’s all about what ‘you’ need to make this work.

jennybeeay

perservere…your user ID seems so appropriate here and I'm sure it's on purpose. That's what I intend to do also. Thank you so much for your input and for affirming Howhale and M5M's advice. I really like their approach as well. Lots to think about here and I'm glad that I have a little time to take a thoughtful approach..at least for now. We're both still in the acceptance phase..particularly my DH because I've know about this for longer than he has.

All the best to you.