Procrastinating

JC5

I ask myself why I am putting off getting help at home for my DH Why is such a simple decision so hard for me to make. It would help me so much to know I can go out and someone will be with him. Give myself piece of mind. But yet I put it off ! Do I really want a stranger in my house , I’ll be tied to their schedule or do I just not want to accept the inevitable? I know I just have to make that call Has anyone felt like this and how did you go forward?

trottingalong

I do feel like that. I haven’t reached that point of needing anyone yet, but I can see the writing on the wall, I don’t like the idea of someone being in my home. I also stress about the expense. I live in a small rural area and help is not only hard, it’s not quite top notch either.

mrsdee13

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.

JJ401

I am procrastinating too. Getting the help acknowledges the decline. But, its not the decline of DH (he's holding steady for now), It's my decline. My hip is just getting worse and I can't do some things now. I need to hire someone for house cleaning. I just can't get myself to pick up the phone and call.

Why can't I do it? I called and hired the grass/yard guy. Why am I putting off hiring someone for inside. We can add it to the budget. Its not the cost. It's that I can't get myself to acknowledge my infirmity.

frankay

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.

SDianeL

I think part of it is admitting you need help. Mine was pride. I started by hiring cleaning help every 2 weeks. I stayed home while they cleaned. It was a huge help. Then the VA provided a caregiver for 4 hours a day once a week. The first 2 times I stayed. Then I would run errands or doctor appointments. The agency Assisting Hands sent the same person each time. She didn’t really do anything just made sure he wasn’t alone. She came noon-4pm. He called her “my lady” and she was awesome.

justbreathe2

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.

lenbury

Several months ago I realized I needed help in the morning. I had someone come in 5 days a week for 4 hours -- it has been a lifesaver. The aide is experienced with dementia and has given me the opportunity to speak with someone that understands what I am going through and provides a break for me.

JudyVE

https://alzconnected.org/discussion/71813/procrastinating

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. ❤️

trottingalong

https://alzconnected.org/discussion/comment/234319#Comment_234319

My DH is almost 81, I just turned 68. We are in a similar boat. Level of care and cost are factors I worry about.

ImMaggieMae

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.

CampCarol

I have an aide coming now that he loves. She comes 3x weekly for 4 hours each. However, as others have said, be prepared to try multiple people/agencies. It took me almost 10 months, 4 agencies and 12+ aides to find a really good match for him. But it’s so worth it if it works out… him just having somebody other than me to look at has been really beneficial. And although he has no clue who she is when I tell him she’s coming, he’s overjoyed to see her when she arrives. That smile makes the effort I went through to find her all worth while.

Sandi Roe

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

Traveler18

The help is so important for respite for you and as a back-up if you become ill. I wanted a couple of people who knew their way around our house so that if I was ill, people could come and help out. They are just our "helpers" and my husband hasn't pushed back (which he does for most things). My suggestion would be to get someone lined up to help as you may need someone in the future and you can't do the research if you are sick. Always be prepared for the next stage/step. It takes time to research, but we got lucky right off the bat. I had some referrals and in our area there aren't the minimums I see referenced by others. I have two different people who each come out one day a week for 3 hours. I get so much done and am able to reconnect with others which helps my mental state and my DH really enjoys the "visitors." It has been a blessing!

White Crane

My DH is now in MC but before that I had a very nice lady who stayed with him so I could get out for awhile. Here is what I did. I called the Area Agency on Aging. They did an assessment and I was given 16 hours a month of respite care. After awhile it increased to 32 hours a month plus a shower aide. It took about a year to get the right fit for DH. When we finally found her, she was a jewel. At first, DH was angry and said he didn't need a babysitter. He settled down though and began to enjoy their time together. She would bring him treats and games and play rummy with him. I urge you to make the call and get the help you need.

B2ingua

It is hard to find the right person. I pay a local agency. For my Mom we found that person. Mom was a widow for 34 years before we had someone come in to the house. But they clicked and they would go out to lunch dutch treat 3 days a week. The lady would handle all the money because Mom would want to tip 20.00 on a 6 dollar meal. We haven't found that for my wife but maybe she is further down the spectrum.