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    Angela Lunde

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  • Alzheimer's blog

  • April 21, 2009

    Making the move to a care facility

    By Angela Lunde

44 comments posted

Several of you recently have asked the really tough question, as Bess did last month: "When, and how, do we make the decision to put her (our mother) in a special Alzheimer's unit?"

The reality of persons diagnosed with Alzheimer's disease or a similar progressive dementia is that many will ultimately need to make a move because they need more care than can be provided at home.

Families can sometimes lose sight of the fact that the demands of full-time caregiving are more then any one person can realistically manage. Understandably though, they may resist the thought of moving a loved one to a care facility.

In making the decision of when to move, there are no right or wrong answers. All caregivers, families, and persons with dementia are unique and will have different circumstances. Friends, doctors, and individual family members will each have opinions about when or if someone should be moved.

However, for most of you the decision to move a loved one is based on a combination of practical, psychological and/or medical reasons that may include one of more of the following:

  • Caregivers own health is being compromised (including sleep deprivation).
  • Caregivers own physical limitations (lifting, mobility).
  • Caregiver is experiencing loss of work and/or the inability to manage other household or family responsibilities.
  • Sufficient respite support or qualified home care are not available or become unaffordable.
  • Symptoms of the disease are evident and challenging to manage at home (incontinence, aggression, paranoia, wandering).
  • Person with disease needs more supervision than can be provided at home.
  • Home environment is no longer safe (negotiating stairs, getting in and out of bathroom, narrow doorways).
  • Person with disease is becoming more dependent with more activities of daily living such as eating, dressing, bathing.
  • Person with disease is experiencing weight loss, dehydration or simply refusing to eat.
  • Proper medication management is compromised.
  • Person with disease no longer recognizes home as home.

Even when a thoughtful decision is made to a move a loved one, caregivers are bound to feel sadness, grief, fear, and probably plenty of guilt. These feeling are normal. Caregivers may feel guilty over not upholding old promises to parents or spouses, or they may fear what others will think or say, or fear that the care will be inferior. In addition, the decision underscores the inevitable decline of their loved one, resulting in further sadness and grief.

Once the move is made, many families say it was harder than they had imagined, and that they probably waited too long. The degree to which you can reasonably adjust to the transition is often associated with the planning that was done before the move. In other words, accepting the move seems to be less painful when families feel that they took the time to explore options and then made the best decision they could.

Keep in mind that the role of caregiver doesn't abruptly end once a loved one lives elsewhere, it just changes. You still play a vital role as your loved one's caregiving advocate. However, without direct care responsibilities, you can resume with renewed appreciation the time you spend with other loved ones.

Finally, if you love someone with Alzheimer's disease, remember you are entitled to have a life of your own. Taking care of yourself is a gift to your loved ones as well as yourself. You simply cannot meet every demand. Your thoughts and feeling are normal. You feel guilty because you love.

"The promise to always keep mother at home might have been made with the best intentions and hopes, but inherent in that commitment is the idea that the family will do what is best for Mother. It may be a promise that should be broken, because keeping mother at home may not be best for her."

— from "The Best Friends Approach to Alzheimer's Care"

44 comments posted

blog index

  • August 3, 2009 7:52 p.m.

    Besides having dementia, my mom has diabetes. After our dad died, my brother lived with her to test her blood sugar levels and make sure she got her insulin and meals. So he could continue to work, we hired home helpers to come in during the day. The trouble was, mom would lock them out of the house or try to hit them. She also started fighting my brother about taking her insulin. In December she came down with the flu and could not keep any food down and had to be hospitalized. As she recovered though, her doctor suggested she be placed in a skilled care facility. She hated it and us for taking her there, but we now realize that she was beyond our control. Since December she has been in three different nursing homes. The first got rid of their Alzheimer's unit, and the second sent her to a mental hospital to evaluate her meds because our mom, who was always a sweet and gentle person, tried to strangle a fellow patient. She is now in a very "homey" place with staff that really deals well with their dementia patients. It breaks my heart to see her declining in this place, but I know in my heart that it is the best care for her...and her kids.

    - Alex

  • July 8, 2009 1:58 p.m.

    My parents retired overseas almost thirty years ago, to a place that has no known services for the care of dementia patients. We don't even have a diagnosis. It has been nearly impossible for us give them the care they now desperately need. Both are in their 80s, and the laws and standards are so well, backward, our struggle is to get them home to the US and into a facility as soon as we can (we've been trying for eight months now), and dealing with things like indifference, lost passports, lack of technology, and doctors who don't see the urgency of the situation. We earnestly hope that when we finally get them to the airport, they'll be physically able to travel. And as for walkabout, our worry is driveabout. There is no recollection of the revoked license, strenuous insistence on being just fine, and a whole lot of hostility aimed at the very ones who are losing sleep over all of it -- us.

    - Name Withheld

  • June 23, 2009 8:44 a.m.

    What do you do when the main caregiver sees their sole identity and purpose as the spouse of that same Alzhiemers sufferer? There is full-time help. They both need it. He should have been in an appropriate facility 2 years ago but she just can't give him up. This is the second time he has gone "walkabout". The first time was last year and he came back by himself 2 hours later. This last one he went missing for 12 hours, it was 90 degrees most of the day and the diligent police found him and brought him home. These people are not my parents but tend to rely on me heavily as a part of their support system. How do I shake her into making the decision and not being persuaded otherwise? How long can a person selfishly rely on the good will of many others? When does the system step in and take over? In their case it has been said that if he moves to a facility it is a death sentence for them both. Is it?

    - Sally

  • June 11, 2009 1:05 p.m.

    My father has Lewy Bodies dimentia and was diagnosed about 7 years ago. He is now on the finall leg of his journey in this life and we are staying close to support him for as long as possible. My mother made a valiant attempt to keep him at home for as long as possible and finally during a regular visit to his doctor, he was admitted to the hospital for respite care, to help my mother care for herself, and he has not and will not come out again. The tradgedy of this is the conversation about how to care for him in the future had already turned to a care home. Regretably his condition deteriorated so quickly that the decision was removed from my mother and the family without any choice in the matter. It is not easy seeing him in a facility now, but his level of care and security is far better now that it would be had he stayed at home. Have an open discussion with your partner or parent before it is too late about what inevitably will happen and let them know that even if they can't stay home anymore, you will continue to be their care-taker. Do this while they are still able to understand the situation and get their approval to do what is best for them and yourself. This will go a very long way in eliminating the feelings of guilt and sense of abandoning aloved one. There is no happy ending to this saga, but it can be a comfortable and safe experience for everyone.

    - D C Long

  • June 3, 2009 9:18 p.m.

    My cousin, who lives alone had gone through most of her life savings, buying new cars, jewellery from a mall kiosk etc. with huge visa bills before her POA was put into effect. With much work a mortgage has been obtained to keep her in her house and automatic bill paying and a weekly allowance to her for extras. We have a PSW 3 times weekly for dinner help and medicine compliance, two day programs at the Senior Centre with van drives to and fro. She constantly tells her friends she has no money, no food, her family have taken everything away and insists there is nothing wrong with her. She is very convincing and they believe her. Her licence was taken away by the MOT but she still insists she is getting another car. Has bought 2 bicycles promising to pay folks back, which she cannot ride because of poor balance, due inpart to 2 hip replacements.She has had a 2nd opinion. We are told by CCAC that we must wait for a disaster to happen before she is put in a nursing home which we feel she is not ready for now. We feel a retirement home (which she refuses to consider) would be ideal but she could walk out. She will not accept any more home help and is constantly threatening to fire the PSW help we have now. Today we discovered a "friend" had advised the government to send her old age cheques to her house rather than the bank so she would have some money. How do we protect her and keep her safe? Our goal is to have her enjoy and make the most of the days she has le

    - Linda

  • June 1, 2009 8:01 p.m.

    After reading your article, I cant seem to make it fit! My husband was told he was not care facility ready because of his constant care due to not wanting to stay in his bed or chair and his sleeplessness. I just dont see where his situation is so different than millions of others with the disease but I was told I would have to have a sitter in the nursing home because they dont have usfficent staff. Currently I am paying sitters around the clock but have no idea what I will do if the money plays out before he does!

    - MeMe

  • May 13, 2009 5:44 p.m.

    My husband of 45 years-almost 2/3 of my life has been with him-started his downhill trip with dementia in March of 2008. Earlier he became a type 2 diabetic, then after a colonoscopy in 2005, lost the ability to urinate the usual way & eventually had a suprpubic tube inserted + bags for day & evening. In 2007, became legally blind from macular degeneration & had to give up his license. In 2008, he had a minor stroke, & dementia descende on him. On April 20 this year, I was unable to wake him for supper, & called 911. After two hospital stays & two rehab stays, he is insecond rehab stay & getting physical & occupational therapy, etc. It is heartwrenching to see the change in him. I run out for all errands & try to get to see him every day. The staff is taking good care of him, but I am torn up every time I see him. I come home, and once inside with the door closed, & break down , every day. I have been told not to hold it back, but to let it all out. The apartment is so empty without him & every time I look at something he has made or his paintings, I go to pieces all over again. I have GI problems over this every day. Imaganing life without him is an awful thought. I have lost parents, both brothers, and the grandmother I loved & spent most of first 11 years of my life. This one will be the worst loss. I feel devastated. Please-pray for me.

    - Emily

  • May 13, 2009 1:40 p.m.

    I don't know what it is like in the US, but this time of life for elders must be terrifying. Loss of home, maybe auto, furniture, ability to make many decisions. We never thought so many would live so long with many attendant health problems. This is a lesson for many of us younger caregivers. We need to mind our own health, exercise & eat well, keep our minds alert. In Canada a good many seniors have pensions that cover their expenses in Assisted Living facilities and Personal Care Homes. Those who don't have adequate pensions can qualify for government subsidies. Health care and drugs are also covered by government. I am amazed at the care provided. So - caregivers - take care of yourselves. We are next up at bat!

    - Liz, (Canada)

  • May 12, 2009 3:59 p.m.

    My husband of 61+ years has been in a care center for less than one month. It has been a roller coaster experience for me. The sundowning became so severe that he was uncontrollable in the Alzheimer unit. He was sent out of town as a person seriously mentally impaired, to be treated and his meds evaluated as to how he reacts to them. As it turned out, he had a mild pneumonia, and early signs of congestive heart failure so that is what treatment was done at the hospital out of town and then he was sent back to the original care center. There was no med evaluation done. He is no longer in the Alzheimer unit. Hospice has accepted him and will tend to him at the care center. I am still wondering if some of the meds used to calm him were not the best choice for him. I am an emotional basket case to say the least, with all the guilt feelings, sadness, and wondering if I should have kept him at home. I love him dearly, even though he is not the same now. I feel he is suffering the loss of his home and the farm life. There were times when he was still at home that he did not know who I was and that was painful for me. It is a vicious disease. I hope there is a cure for the future generations.

    - Bonnie

  • May 10, 2009 9:47 p.m.

    My Dad was diagnosed several years ago (maybe 3-4?) with Alzheimers. He will be 87 this summer, and has another number of health going as well (Heart disease, now diabetes, etc.). His little brother has been in a care facility for 4-5 years with Alzheimers as well, and while it's easy to speak from the outside, he was probably kept at home a little longer than he should have been. While we have been fortunate that my Dad's wife is still willing and so far able to care for him living at home, we all agree that those days are very numbered based upon his steep decline in these past 6 months of so. Dad does go to an adult senior facility specializing in this disease about 3 days a week, not only for his own stimulation, but to give his wife a well-deserved breather as well. After spending the last 3 days full time with him in the hospital for heart related issues, it makes me SOOOO appreciative and empathetic with his wife who deals with this disease day in and day out, and has a heart of gold. Take care of the Caregiver as well as the patient. The Caregiver may rarely speak up and recognize the stress they are putting themselves under, regardless of the best of intentions. Even though it may be a struggle initially, moving towards the best interest of the patient I believe at this point is the right decision. Moving Dad to a FT facility will be hard when the time comes soon, but it's not going to be an option for anyone (him included) to keep him home for long now.

    - Patty

  • May 5, 2009 6:49 p.m.

    Today is the first day of my journey. I was just asked by my Dad to please look into becoming my Mom's caregiver. He has cancer and he wants to be prepared. Where do I start ? They have insurance that pays a caregiver. I will be giving up work to do this.

    - Annie Z.

  • April 29, 2009 7:37 p.m.

    Does anyone know where you can download a sample Letter of Medical Necessity that relates to the necessity for placing your loved one in a facility? If you have one and wish to email it to me, it would be greatly appreciated!!! djboca@gmail.com Thank you!!!

    - David Rubin

  • April 29, 2009 2:08 a.m.

    Yes, the decision to place a loved one in an institution is difficult - but not placing them may be even worse. My 93 year old father even refused having caregiver at home. He insisted on taking care of my mother by himself. Well - both of them fell while walking and my mother was hospitalized for a gash in her head and a crack in her knee. After retuning home, my father again refused any help. My father had difficulty physically moving my mother so she ended up sitting on a chair and sleeping. This caused her to develop a blood clot in her leg. Further hospitalization caused my mother to catch, in the hospital, C-diff Bacteria in the intestinal tract and later she caught in the hospital VRE - a dangerous bacteria in her blood. Needless to say my mother has totally gone down hill in a short time and has stopped eating and drinking. It looks like we are headed to hospice care. My mother was still doing pretty well until this incident. This could have been prevented had my father gotten 24 hour care or placed my mother in a safe dementia unit. Please - leave the guilt and do what is best for your loved one. If you are a caregiver of someone with Alzheimer's/Dementia who has reached the stage where they are incontinent and having physical challenges - be kind to them and get the needed help/facility!

    - Oran

  • April 28, 2009 3:48 p.m.

    Reading the reasons for helping an aging parent into a nursing home make me realize that I wish I could care for myself the way a good child cares for his parent. It becomes ever more difficult.

    - Leslie Aitken

  • April 25, 2009 10:13 p.m.

    first time here also. My dad who just turned 65 appears to be in the mild to moderate stage. This is SO tough because he has been out of our lives for over 30 years (divorce, alcoholism) and since his medical needs have escalated he is calling me. All of the time. I think he forgets that he calls and leaves me tons of messages. Two doctors are differ in their diagnosis for him. One thinks he is depressed and the other alzheimers. I am married and we have 3 children. Completely at a loss, and overwhelmed. I want to show compassion, forgiveness, and love to my dad. I am taking him to the doctor next week. The one doc told me that depression can manifest in alzheimer like sypmtoms. Anyone else have this experience?

    - annie

  • April 25, 2009 5:23 p.m.

    I'm not sure where to start, first time here, my brother is 58 and we are told he is in stage 2?? we havn't seen any papers. His wife broke down and is in a ward so the family brought him back from Tx and drop him at our home. There is lot more to write but my sisters wants to be caregiver and I will help. Where do I start. Are their stages? Can he be let alone? Will the doctors tell us more?

    - Linda Key

  • April 23, 2009 11:02 a.m.

    The decision of move my mom was ultimately decided for me because of a quick decline in her abilities. She remained in a special dementia unit for nearly 4 months until she passed away a few months ago. I still have doubts and guilt about it but I do appreciate the fact that the facility we chose took good care of Mom.

    - Robyn

  • April 22, 2009 2:53 a.m.

    My father (95 or 96) 'should' have gone into care long ago. My mother (89yo) and sister have been struggling to cope with sister holding down a stressful FT+ job as well. A year ago my mother 'died' 3x and was brought back notwithstanding DNR instructions because the staff realised that she was struggling to live to care for Dad. She decided to have a pacemaker put in and has recently had a few TIAs. A recent fall resulted in broken collarbone, hospitalisation and now rehab care...but she may go home soon. Meanwhile I sit in Australia worrying about all 3 of them . . . My sister is often close to breaking point and my brother gets called to come and see either or both of them at each new emergency...not to mention his efforts to attend birthday and holiday occasions. My last trip back to USA was in 2006 but I have now retired and my pension will not allow more trips back and forth. When I retired my husband and I moved into a retirement community....we are relatively healthy and happy and feel that we will at least have spared our children what we are going through with my parents and their refusal to give up living in their own homes with help so difficult to find.

    - Ellen

  • April 21, 2009 4:34 p.m.

    After going through the struggle of keeping Mom at home with various caregiving for over 10 years, I have placed her in a Dementia Unit. I found one that had a 24/7 RN and a high ratio of caregiver to patient. Even with that I find I have to be a constant advocate for her clothes, health, hearing aids, glasses, food, and peace of mind. UGH! I am in counseling to deal with these years of giving back to a wonderful mom who is no longer able to care for herself. She is 98 and probably as healthy as I am!

    - Sue Trowbridge

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