I'm new and looking for advice

I'm the caregiver for my 86 year-old father (living with me in my home) approaching the severe stage and I have some questions about what to expect next.

He has very limited mobility, is still pretty communicative (some good days/some not). He suffers from hallucinations for which he now takes medications. He is periodically incontinent. I use a baby monitor to keep an eye on him and a pressure sensitive floor pad that alarms when he tries to get out of bed. I'm wondering what to expect in this next stage and how you manage support.

13 Replies

  • You are doing everything you can for your father. It's time to consider whether you con continue giving him this level of care at home -- including lifting and turning him -- or whether to place him in a nursing home.

  • Thanks for the reply! I'm doing everything within my power to keep my father at home. I don't want him to die in a facility away from family if I can help it. My husband is a tremendous help and he retires at the end of the year, so I will have even more assistance. My daughter also provides respite for me. So my support system is very strong. I have all manner of monitors and alarms to help me monitor him and I even have a sheet that helps me move and re-position him in bed. My problem is that I'm a planner and as he is now entering the severe stage of this disease I just don't know what that truly means. Will he be incontinent all the time or only some days? Will he be able to feed himself sometimes or completely incapable of doing that at all. Should I be determining now if his medications can be crushed or worry about that later? How will I know if I need to change to a soft then liquid diet? What does one use for a liquid diet? I think I'm simply fearing the unknown and that is compounded by the fact that I believe he is declining rapidly. He first started taking medication for AD only 2 years or so ago and already he is teetering toward stage 7. Any insight you can provide will be greatly appreciated. Thanks so much for responding.

  • Go to the Alzheimer's web site They have detail of the seven stages Or google 7 stages of Alzheimer's You Tube also has information

  • Thanks so much for the suggestion. I found the website for late stage care giving and it had exactly what I was looking for.

  • You might want to contact your local hospice organization to ask whether they have a Transitions program for patients whose life expectancy is longer than for traditional hospice programs. Your county may also offer information and assistance. Some health insurance programs like mine, have toll free numbers to call and speak with registered nurses. Also check with his primary care health provider to see what resources you can consult for information about administering medication. I'm glad to hear that your husband will retire at the end of the year and join in your team effort to keep your father comfortable at home.

  • Great suggestions. His insurance does have a number for nurse advice; I had not thought of that. His primary care physician just set up some home health care nurse visits and lab tests, so that will be helpful. I'll just have to make sure I keep them coming periodically. Sounds like I might need to check on the medication options. I did find two webpages that were very helpful about what to expect and about hospice care. Thank you again. Your tips and those from Lori56 have helped to relieve some of my anxiety.

  • I I'm in the same place you are I am keeping my mother full time and she has dementia and Alzheimer's I do not understand this at all all I know that it is something terrible to watch your mother mine leave her everyday my mother no longer walks and she hallucinate all day everyday and I get no answers from the doctors to what to expect and I am so scared that I do not know what is coming next I refuse to put her in a nursing home because that would hurt me so bad I feel like she took care of me so I should take care of her but this is the hardest thing I think I have had to do I need people to talk to to encourage me about this terrible that is taking my mother's life from her

  • Oh my goodness. I really hear your pain. You are right...this is the most difficult but loving thing your will ever do. Watching your mother slowly disappear before your eyes is painful. I have a couple of questions for you: 1st do you have anyone helping you? My husband helps me although he is still working. The best doctor to have is a gerontologist. They can prescribe medications that might help manage symptoms. My dad uses Aracept and Namenda. But, they don't necessarily slow the progression of the disease. In all honesty I don't know that they are doing anything, but I give them to him daily. 2nd: how often does your mother have hallucinations and do they frighten or alarm her? 3rd: Have you read any resource materials? "The 36 Hour Day" is an excellent book. It will explain a lot about why you see the behaviors you see and gives tips on how to manage some of them. 4th: Are you having behavior issues with your Mom? If so, what is she doing? My father has only been diagnosed for 3 years, but in that short time he's gone from Mild Cognitive Impairment to Stage 6 Alzheimer. Do you know what stage your mother is in?

  • The same is going on with my mother in law. What meds are being taken? Who prescribed them? Are they helping the hallucinating? I feel your pain.

  • The same is going on with my mother in law. What meds are being taken? Who prescribed them? Are they helping the hallucinating? I feel your pain.

  • Dad was prescribed risperdal by his primary care physician. There is an increased risk of stroke associated with this medication, so you have to weigh the risk/benefit. He was having hallucinations almost non-stop and the constant mental activity was very taxing for him and wore him out. Even he asked if there was something he could take to make them go away. He couldn't focus on eating, tv, or conversations.Then, he started acting on them; he thought he had dropped a cigarette butt on the floor (he doesn't smoke), so he was climbing around trying to find it. He thought the ceiling fan over his bed was falling, so he tried to scramble to the other side of the bed to escape it. I had to stay by his bedside constantly just to keep him from falling. His quality of life was truly suffering, and the doctor and I felt he had an increased risk of hurting himself. The medication has significantly curbed the hallucinations. He still has a few, but they are not as intense, don't last as long, and he is more easily redirected away from them. I hope that helps you; we're in this together.

  • I know this probably sounds silly, but when my 87 yr. old mother was hospitalized for hallucinations, they found she was dehydrated. After full hydration was achieved she remained fine for a year. She passed from stroke at 88, but in pretty good mental shape.

  • I'm glad to hear your mom responded so well, but I'm sorry for your eventual loss. Dad was treated once for dehydration, although it did not cause hallucinations. I've since really tried to make sure he stays hydrated. Thanks for the reminder; dehydration is so serious.

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