How to deal with resistance to in-home care?

4 answers | Last updated: Sep 13, 2016
Rose mary s asked...

Our friend has early onset Alzheimer's Disease. She has set up for a "team" of friends to be power of attorney, handle her finances,etc. We feel at this point that she needs to have someone come daily for 5 hrs. to keep her involved and active (she lives alone) and to make sure she eats one good meal a day. Several months ago, we hired someone to come 4 days a wk.for 3 hrs. (someone familiar to our friend). She seems to enjoy having this companion,but resisted more than 2 days a wk. Our friend was gone to visit family for a month and the feedback that was given is that she needs someone daily mid-afternoon-evening. However, our friend is resisting this and says she does not need it. Her physician feels we are being overly optimistic with this plan and feels she should be in assisted living. Our friend does not like the physician because she is the one who told her that she could no longer drive and blames her.

How do we deal with her resistance to help? The current caregiver is very good at setting up activities that she enjoys and responding to specific requests.


Expert Answers

Brenda Avadian, brings knowledge, hope, and joy to family caregivers for loved ones with Alzheimer's and dementia. She cared for her father with Alzheimer's and helps families one-on-one and in groups. She is the author of eight books, including the pioneering memoir "Where's my shoes?" My Father's Walk through Alzheimer's and the Finding the JOY in Alzheimer's series. She presents vivid, compelling, and funny keynotes to both professional and family caregiving audiences.

Rose Mary, what a wonderful situation your friend has set up--a team of friends to help her despite her resistance to in-home care.

From what you describe, I agree that she needs someone to keep her company. However, you also need to balance this with her need for independence and privacy.

Although we all enjoy company, we all like periods of time alone when we can do what we want in our own home. Your friend is no different than you or me.

Since the current caregiver is good at engaging her in activities and helping her then see about extending this person's hours and days.

Start by adding an hour a day each week or two then have the caregiver "drop in one day for a friendly visit while in the neighborhood."

Slowly expand on the hours and days until you hit your daily target of 5 hours.

Sudden changes are hard, but with gradual incremental increases you'll get closer to SUCCESS.


Community Answers

Monica heltemes answered...

Rosemary,

It is wonderful that your friend has so many 'helpers'! I am not sure if I understand fully - you mention that it was after your friend visited family that it was suggested that she have afternoon into evening help. Was this suggestion from her family? Is your friend's family also involved in her care?

I am just curious, because if family is involved, it might be time for them to help with planning both for now and the future. Assisted living facilities can have waiting lists so it is better to look into them sooner rather than later, so that back-up plan is available.

Perhaps your friend can see a physician other than her primary physician, a specialist who can stage her dementia and give more definitive recommendations for the level of assistance she currently needs. This could be a neuropsychologist, gerontologist, or occupational therapist.

I hope that gives some ideas that help. Your friend is lucky to have you.


Marly26 answered...

There are many times that we feel that our "friend(s) should be in assisted living because we see things that "we" don't like. You have to look at the situation differently. I know what the Physician has said but he doesnt' live with her either. If your friend will allow for your friend to come in to do her meals and others' to help that is great. You said your friend is at the early stages of Alzeihemers'. Does the Physician have her on medication that helps with this ailment? We ourselves have to remember that yrs. ago there wasn't a place you could go and stay other than home, and quite likely this is how your friend feels. As in come and visit me but I'm not leaving here. Are there things that have you so worried that you feel she should not be on her own? If she knows not to touch the stove, use stairs when nobody is with her, can answer the phone as well as call out, because of the lay out of your story I feel its' okay for someone to be there at times and other times give her, her space. Given the fact that I myself work in the Healthcare System (planning,evaluating hrs. etc) I have found that once that person is moved from there home, and pls. dont' quote me they pass away from loniness. Not from being where they are but where they want to be. If she is only seeing a Physician perhaps that Physician should refer you to a Geriologist. They deal with elderly people just as your friend and will give you a precise answer as what to do. In the meantime, since your friend is so adamant abt. staying where she is take babysteps with her. Allow her to have the hrs. she has and yes by all means have this person who cares' for her to pop in unvisited. Take her out shopping, see how she does. Make meals easy for her so that if she would like a snack its already there for her. Cut up some cheese, have crackers for her, even a small dish of bread and butter pickles. Elders' love their sweets so have some cookies in a closed container for her. All these little things add up. Have yogurt in the fridge for her, puddings, fruit etc. Anything that you feel that under normal circumstances' that she would herself have had for company but now for her, put them in small containers. Elderly people do not eat a lot at one sitting, they like to pick. If she likes her tea, have a small kettle (a 2 cupper) that will shut off) if you feel she is responsible. Even juice packets or ice-tea pkgs. are good. I dont' know where the family is in all of this however you never did mentioned them. Where are they? Obviously someone maintains her Bank Accounts, pays her bills etc. I would call a meeting, I would think prior to getting in to the Geriologist (which I feel a family member should take her) or they will ask the same as I am Where is the Family and who are you? Do you have Legal papers binding stating that you are the Primary Caregiver and they have given you control? This is where you really have to watch. Legalities of looking after a person of sound mind is one thing, caring for one that is not sound is quite a different story and the hot water could be boiling, if you know what I mean. Again, a home for her. Family definetly has got to be involved. This is imperative. There has to be Proof of Who They Are, they have to see her Last Living Will, all of her accounts', and GIC's, or other investments. Many questions are asked pertaining to her health. Her Physician. They also have to answer to who has been caring for her up to this period in time. Is a family member checking on her periodically? To get to the point. 1. What sort of Assisted Living - Full Care 2. Her Income: This will allow whether she have Private, Semi Private 3. Is she able to come to to the Dining Room for her Meals 4.Is she able to dress and bath herself or does she need assistance 5. Who will be taking her for Physicians' visits' 6. Who is able/allowed to come and visit her. Is she at risk? By that I mean taking off somewhere. 7. Who is Power of Attorney So many more. If you feel that she is in need of a home, get together with family b/c if her name is not on a list it could take 2-3yrs. for her to get in and that is if she is able to live not self-sufficiently but bathing, dressing etc. It takes that much longer if lets just say 2-3month period, and I have seen it happen she suddenly takes a change for the worst and needs Pallative Care (someone looking after her basically around the clock) she would end up in the hospital until they can find space for her in a home. Many times they end up in the hospital until the end before this happens. Again as I said, perhaps you didn't want to mention family in case they seen this I dont' know but you are being very purse lipped about the situation. In any regard it is time to contact the family, get them involved, explain what is going on. Obviously they have to know something, maybe not to the extent, however they do have to visit at times. P.S. You may even set up a visit at one of these homes and ask for a tour, taking her with you. Watch for facial expressions, any questions she may have and above all once home ask her how she liked the visit. Good/bad etc. I wish you much luck but even better Get The Family Involved a.s.a.p. Please do not feel that you are doing a dis-harm to your friend even if they take her elsewhere. It sounds like you have done your duties with love I might add, this has to be very stressful to you yourself. Take care my dear.


John castellano answered...

My Italian mother fought the aids tooth and nail, my father was slowly dying (she would only live 6 months after him) but having women in her house touching her times, cooking killed her. There were days she really relied on them others she would go into bed and ignore them completely. My father liked and welcomed the service she would not take a glass of water from them. What really bugged her was the aids worked for me the child caregiver and they reported back to me everything that went on in the house that she could have normally kept secret.