Procrastinating

Me three, I am not much of a procrastinator, but I am not at that point yet, and I'm more concerned about the level of care and the fact that my DH will not let anyone assist him. He barely allows me to help him. I see the writing on the wall, and if things continue to decline, we'll be in this situation by the end of summer 2025. It's so sad there are no more options for this disease and assistance for families. Yes, the cost will be another issue. He's 82, almost 83 in a couple of months, and I just turned 65. I am doing all I can to educate and prepare myself for this journey. I pray for all of us.

I'm in year 8 of this journey. I too put off getting help but finally pushed myself to look into it. Most agencies wanted 4 hour blocks of time and a minimum of 16 hours/week @ $35-37/hour (more on weekends, nights and holidays). They would ask "when do you need help?" My response " I need help when I need help; I can't tell you when and most times I don't need help". Also there was no gaurantee that you would get the same person every time or if they would even show up. In addition, there were a lot of things the caretakers were not allowed to do and my DH was a big man. So I slogged on for several years by myself until 18 months ago when I needed help almost all the time and I found a MC for him. Now I know there is someone to help him 24/7.

I feel the same too. My DH not quite ready for help, but feel the time is not too far off. We have a dog and that is another problem with someone coming to the house and taking him. I am going to visit/tour a daycare place when that time comes. I would rather take him someone. That way I could get something done at home.

My DH was diagnosed with Alz about 3 + years ago. His older brother had the disease & died 5 years ago after suffering about 8 years. My dear departed SIL told me “Don’t wait to get help”. She did wait and regretted it. I took her advice and started getting help in the house about 12 months ago. I am fortunate to have the financial resources for this, and I realize not everyone does. But get in touch with your local council on aging, they have a lot of great resources. I started with help 3 days a week for about 4 hours each. I recently increased to 6 days x 8 hour shifts. When you get help in the house you will need manage that help. You also need to make sure you have things stocked that the aides will need : gloves, wipes, skin care products. If your aides are helping with light housework, you’ll need to tell them what you want done each day. Make a list. Have a white board with tasks / check lists. After having several different aides coming during the week, I managed to arrange a single aide for weekdays. It’s been great having that consistency. You will be tied to the aides schedule somewhat. But the respite time is so important. Get out with friends. Go to the gym. Just go for a walk or out for a coffee. I don’t have overnight help at this point, but I have prepared for that eventually, I have a small room outfitted for myself (I currently still sleep with my DH). I have a guest room that could be used by an over night aide if the time comes. My local elder services organization has been so helpful. There are resources available based on financial need that they can help you with if needed. Start with a few shifts a week, you don’t need to get full time help right away. Good Luck. ❤️

My husband and I are now in our mid 70’s and we have had help for more than 2 years. We hired her through an agency. We had one person in the very beginning who we sent home with the agency person who come with him the first time after about half an hour. Long story, but it clearly was not going to work out. We contacted another agency and the lady who is us now comes 3 days per week for 4 hours each time. There is a 12 hour per week minimum with most of the agencies I’ve spoken to. She’s honest, dependable and my husband gets along well with her. We introduced her as someone who is here to help, kind of as a friend. I stayed in the room the first session. My sister lives here as well and at least one of us is always in the house when the caregiver is here, usually upstairs in my sister’s room, paying bills, making phone calls, talking to each other, etc. It also gives me the chance to get out and do grocery shopping, errands, doctors appointments, etc., and also a brief time to just get away. Caregiving is so isolating.

The caregiver isn’t a nurse, just someone licensed and certified as someone to watch him. She can deal with incontinence and she’s calm and gets along with him well. He was around stage 4 or 5 incontinent, mostly urinary, cooperative but at the stage of repeated questions and often confusion when I first looked for a caregiver, just to give myself a break from the 24/7 caregiving. He could not be left alone with all the things in the house like the stove or things where he could hurt himself or walk outside and get lost. We have an open floor plan in the downstairs and not enough places to lock things up like kitchen utensils that I need on a daily basis for cooking meals, etc.

It’s expensive, but a necessary expense. I would not leave him alone any more than I would leave a toddler or young child alone. Unless something happens to me first, he will always remain here in his home with me. I just don’t have it in me to place him in an MC or other facility unless it was a medical emergency that absolutely couldn’t be taken care of in our home. I am lucky that he has never been mean or aggressive. At some point we will probably need more hours of help when he becomes less mobile. We just take one day at a time.

JC5, try it out. Make appointments to talk with whatever agencies or private caregivers are available in your area. Your decisions don’t have to be permanent. If you aren’t comfortable with one, try another. Agencies can be miles away but still have caregivers on their payroll that live close to you. Good luck to you.

we have a cleaning lady that we’ve had for 15 years. She has no schedule but when I need to be gone I have her come clean and watch him, “two birds with one stone” he doesn’t realize she is there for him too because she is our friend. I leave him still alone and leave a note where I go. For now that seems to work. His short term is really bad, I’m learning not to expect him to remember and try with patience to answer the same questions over and over again 🥴 we will never last this challenge without help. I’m not at that point yet for full time help and realize finances play a big part! I call it the CrazyTrain, we all get off at some point, Sandi