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I have been doing this for almost 2 yrs. Both have dementia and mom is on 24/7 oxygen. At present we have an aid 8hrs a day. The rest of the time is myself and my husband and periodically my daughter. They have been in and out of the hospital several times. Both have been in the hospital recently and dad was in rehab after a fall. I could not wait to get him out of there. They put in diapers and he is not incontinent. His dementia progressed and he was talking gibberish. Please, any support would be so helpful. I am at witts end and do not want to put them in a nursing facility.

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contact your local Area Agency on Aging for senior services. There are several programs available. Some states have an older adult waiver program that would help pay for assisted living if that is an option for you. I agree that then an older person, especially one that has dementia enters a nursing or rehab facility staff automatically use adult incontinent products. If either is admitted again, talk with the staff, there should be a care plan or service plan that lists all of the services that will be provided, this is the perfect time to discuss likes and dislikes, daily schedule and incontinent issues. Even receiving in home assistance at 8 hrs, per day, while helpful, caregiving can be overwhelming if the person you are caring for is up at night or wanders. Speak with their doctor and explain what is happening. You can also receive caregiving support for you and your family through the local Area Agency on Aging and their National Family Caregiver Support Program. I am sure there are times you are overwhelmed, don't give up. You receive kudos as you are willing to be a caregiver to your parents, it is not an easy job.
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GayleV-They put them in diapers if they don't feel they can safely get to the toilet and sit on it safely. Have just been through this with my mom who is in a nursing home for rehab. I didn't like it, but they explained that she was weak and it just wasn't safe for her to go to the toilet. Obviously, if they had attempted this and she fell, it is a liability (lawsuit) issue for them. My mom is not incontinent. Just weak. Now, she is stronger and they are taking her to the toilet. At first, I just thought they were lazy and didn't want to be bothered with taking her to the toilet, but now understand about the safety issue.
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Yes, caring for mom with Alzheimer's and her husband with primarily mobility issues. They married 7 years ago. It is a challenge and I do take mom to a day program Monday through Friday for about 6 hours each day. Could not and would not do this without day care. It would be too much all day every day for me and her hubby! You have got to find some help. I highly recommend a day program for mom as it sounds like she is able to get around quite well, maybe dad too.
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Hello Lou125...About your father's experience in the rehab facility: It's very common for elderly people to become confused when you change their environment, so I'm not surprised that his dementia was more evident while there. It's also very common for any illness or injury to be the catalyst that precipitates a sudden progression of their disease. So it's likely his deterioration is not really the fault of the facility itself. As for their use of depends, when your father is not usually incontinent: I'm inclined to think that he probably did have some incontinence while there, that you weren't aware of. I've been a nurse for 28 years, and it would be odd to put diapers on people who don't need them; while it is extremely common for elderly people who are not usually incontinent to be so, while ill, or as part of the dementia progression. That being the case, I can see you wanting them to remain in their familiar environment, just remember, that a nursing home quickly becomes their familiar environment once there.
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Don't let the hospital select the rehab facility. As soon as you find out they are being referred to rehab, check out several different nursing homes. They are as different as night and day. Ask for a tour around meal time. You can then check out the facility to make sure it is clean and does not smell of urine and check out the dining room to see how the staff is treating the residents. Some have to be fed and you will see how the staff handles that. If your dad was there to rehab from a fall, they probably had determined that he wasn't safe to take to the toilet. This happened to my mom. They kept her in a diaper which I did not like but they could not be responsible for getting her to stand up and get on an off the toilet. This didn't go on very long and they are taking her to the toilet now. You said your dad was talking gibberish. Since he was wearing a diaper, this could have been a sign of a urinary tract infection. My 91 year old mom cannot articulate the symptoms you usually have with a UTI, but she starts to babble about crazy stuff and that's when I know she has a UTI. This is the main symptom for older folks. Whenever my mom goes to a nursing home for rehab, we have someone checking on her every day. I pay to have someone go spend time with her during the week and I stop by some evenings and weekends. There is almost always some issue that needs to be taken care of - clothes not being changed, nothing to drink in her room, dentures not in, etc. and this is one of the "good" ones. I do agree with the others who recommend that you meet with their doctors to get the doctors' prognosis as to their medical conditions so you know, for a fact, what you are dealing. Good luck.
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My father was considered terminal over two years ago. We are still on hospice. Once you have that diagnosis, more help is available. I know it is not something that anyone ever wants to have to deal with, but it has made our lives bearable.
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You not wanting to put them in a nursing home may not be in their best interests. Discuss all options with their doctor(s), and arrive at an unemotional decision. Both have a terminal illness, one which you cannot fix. Prepare to let go...my best to your family in this difficult time.
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Had a bad experience with both mom and dad. Dad was in acute rehab/nursing facility. He went further into dementia. They put him in a diaper and he is not incontinent. Just no one available to help him to bathroom. Also took me 4 days to get him out of there.
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I think trying to get some more in home help is a very good idea. Are you in a support group? That could be helpful too. Often it just seems overwhelming to care for both of them I am sure. I have done it... I would encourage you to call the area agency on aging in your community and see if they can offer some help. Often they will have suggestions and someone to talk with. take care of you it is important!
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I know that thru hospice we are offered respite care at a nursing facility. We get 30 days a year at no cost. In the beginning the idea of a "nursing home" was horrifying. But after we used their services and saw what good care they took, it ended up being a positive experience. We got a break and got a second wind. Is there some reason that you do not want to use a facility? I know that many parents "guilt" their children into not doing it. But sometimes it is the best thing for everyone. May not be in your case, just wondering if you had a bad experience.
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I am an only child. I do have aides 7days a week 8hrs each day.
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If you have siblings then that is the first place to start. We use Angels of Care. They are an agency that provides sitters. We pay about $17 an hour but it is well worth it. Even for a couple of hours every few days or so. Are either on hospice? If so, you get help from them too. We also hired a private individual at $10 an hour to come and help with laundry or just to stay while we went outside and did something as simple as mow the lawn.
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Have a heart to heart with their MD, he may be able to order in home help.
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