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My 71-year old mother is badly suffering from Alzheimer's. She cannot bathe or feed herself, she wanders outside of the home, and she can't remember her children and often her husband. My 77 year old father is able bodied, and is her primary caregiver. Unfortunately, he possesses no natural aptitude for caregiving, feeding her frozen dinners, not bathing her regularly, and not making sure she's taking her medication. She has wandered away in the night on multiple occasions without him even knowing.

We have pleaded with my father that she needs more than he is giving, but he clings to two things: one, that she belligerently wants to stay home and 2) that her condition will definitely decline if her situation changes. Is that true in your experience? I feel like if she was in a program, had a caregiver or went to a facility where they provided better care, she could actually feel better. I think if he really though that it would help her situation, he might enlist more help but as it is, he thinks she would just reject any outside help. She did freak out when he took her to a facility for a tour and tried to run away so now he's convinced it would never work. Has anyone had this experience? Any thoughts or advice?

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Another terrible situation to be in. What I can offer is that it got to the point where I realized that I can't give my mother the care she needs and deserves, so I am working on getting her placed in a home, God knows how I will take care of that, but one step at a time. I am now going through the process of enacting the Enduring Power of Attorney, a hurdle for sure, a lot of red tape, but it will be the only thing the bank will recognize and there will come a time when I can't handle bills online and will have to write checks. I bring this up only to alert you to the difficulties. Your father like I was is apparently trying to make it work against all odds. He will have to sit on her day and night, and I mean literally be in the same room. Her demands, and limitations will only get larger. It is not possible for one person to do. The doors will have to be locked, she will become if not already a danger to herself and others. It will become too too much for him and he will realize it, just a matter of time and endurance on his part for an impossible task, like trying to empty the ocean with a thimble. I go through guilt and then I remember what the doctor told me when I said she wants to come home, he said home for your mother is wherever she is once she is receiving attention. It is hard for all of you, encourage dad to get her in taken care of, he can't do it alone, thought I could, I can't, no one person can. You will be able to do this with guidance and I do believe mom will be happier, safer and get the care she needs and deserves and dad needs a life to remake, it is what it is not what we wished it was and this is reality. He is not giving up on her, he is freeing her and himself, least that's my take, you'll find your truth and way through.
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Mom has dementia due to a stroke- it is quite severe. Dad was extremely resistant to Mom going into a home and we tried to bring her home which was a terrible failure...with myself there as well as 24 hour care. It is my belief that while the initial change might be difficult, in a months time things will drastically improve. Consistent care and medication as well as the stimulation that a group environment can provide, never mind the safety issues, would in my opinion greatly improve the quality of life for Mom. Search out a great facility! My Moms home has a full schedule of activity and the food is good, staff very loving. We are welcome to visit at any time for as long as we wish and I have signed up as a volunteer when I am there, that is how nice it is. Dad will probably be relived after a bit of adjustment and he can visit your mom every day! I would then suggest that you get him involved in some social interaction somewhere, friends, clubs, church or volunteering to keep him busy and mind occupied.
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I found something that works for leaving the house, my 82 Year old husband left our home at 1 am last week and it is very hard to stop someone from doing what they want when they are in a high stressful state that the caregiver can not divert, the police brought him home, the next day I had my SOn install Guardian door locks, above the regular locks, the next night he tried to leave and I prayed the locks would hold, and they stopped him cold, he cannot work them - so he just went back upstairs & went to bed. this is a brass heavy duty fold over lock. I have Motion detectors etc, (dogs set them off more then anything) but number one is finding a way for them not to get out.
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Statistically, the care-giving spouse will die before the spouse who needs the care.
Your father's life and health will change when he gets help in her care, but it is an adjustment and guilt ridden.
Their final years together (which may be 20+!) will be better for both when he realizes he is doing the best for her to not put her in a facility but rather in a care home. In WA state they are licensed as Adult Family Homes, in Oregon they are either an Adult Foster Care Home, or Residential Care Home. These are homes that care for 6 or fewer residents. Your mom will be like one of the family. Your dad will be able to visit daily, and even take her for overnights, daily excursions, etc. But she has someone else taking care of the day to day needs, bathing, medications on time, home-cooked meals, other residents she will build a relationship of mutual caring. Her caregivers are fresh--not doing the 24/7 that your father is doing. They have lots of experience with different stages and behaviors of dementia. That said, you need to check out the home, and ask questions as not all the homes are dementia specialty, experienced, etc.
So you can help your dad know that just like retirement isn't the end of working, finding a good care home for his wife is not the end of his marriage and their relationship. This will help him and her to have a better relationship (although with challenges/guilt) because it is not only hard on the spouse providing the care, it is hard on the spouse that needs the care.
Best of luck. Check into Elder Services available in every state to help with the decision, and finding help.
Another thought is that she go for respite for a few days, or overnight, or a weekend. This allows each to "try it out".
It will almost be like he is in a sense courting her, visiting often, bringing flowers, taking out for a walk or a sundae, etc. Help him and her to look for the positive side of the changes in our life. They can relate to the changes that happened through out their life--every change was challenging, (marriage, moving, babies, illness, employment, retirement, etc) but we look for the positive in the change instead of long for no change.
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Altering the environment of any demented patient will be disturbing. they do best in familiar surroundings. Her husband clearly needs more help with his wife.
Some men can be very good usually sons looking after the elderly but many older men have selective memory when it comes to caring for a wife. A caregiver needs to be brought in and Mom may refuse to co-operate in the beginning but if she can gain Mom's confidence and provide a regular schedule I think both mom and dad will be happier. If one of the children visits will she allow them to help with personal care? Doors need to be secured so she can't wander out at night which again is a very common occurrence. If dad does not sleep too heavily he can simply put a bunch of jingle bells on the doors she needs to use. Do not forget that dad probably does not want his wife to spend her final years in a nursing home.
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Often when someone with dementia has the structure of consistant care, medication, and activities a good facility provides they actually improve. Wandering can be deadly and if it can't be managed at home, and often it can't, a facility with an understanding of wandering will be the safest alternative. Someone who wanders needs 24/7 care.

It sounds as though your dad has done the best he can but it is now beyond his abilities. It's very hard for couples to seperate. Placing her in a facility could provide her with the help she needs and you might also see improvement in his health. 24/7 care for someone with dementia is exhausting.

Of corse, as others have mentioned, there are othere alternatives, more help at home form family and friends and /or professional home health care. There are a lot of variables and only the family can decide what best meets everyones needs.
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I would encourage you to get a home care agency involved and just be honest with your Dad. Approach him kindly with the fact that you feel they need some help and that you do respect his wanting to care for his wife. This is very admirable. There will come a point when she will not be able to be up and about. I would also encourage you to get meals on wheels for them. Your local Area Agency on Aging will be able to help you. I would encourage you to get respite care and also some a support group for you... take care, j
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What about a multi-level facility - by that, I mean a place that is a retirement complex with units that have more advanced care. That way your dad could be in the retirement complex and your mom in either assisted living or the dementia unit depending on how much assistance she needs.
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My mother would never have agreed to go to a memory care unit or even an assisted living community...1) mom is not very sociable 2) she was in denial that she could not live alone anymore 3) mom is a control freak who wants complete control over what she can and cannot do and everything going on around her.

Yes it is true that Alz/dementia patients can progress when faced with something traumatic and stressful. My mom would progress from a minor out patient surgery, when she lost her driver's license. A lot of it depends on the personal personality too.

When we placed mom in a memory care unit, she had been taking Namenda for about 6 weeks. She was furious that we did this, but she did not decline. Whether it is because of Namenda, we don't know.

I think your biggest problem is your father because if your mom was placed, and she will ask to go home continually, your father probably would not be able to handle it.

My mom is fine when we are not there...just like our children are when we take them to a babysitter or a daycare. I can handle mom insisting on going home, but mom does get abusive and makes a scene with my sis. Mom has tried to leave, she now wears a watch on her wrist that is a security device.

Mom socializes, participates in activities, has a couple lady friends who are similar in cognitive abilities. We have DPOA and mom is mentally incapacitated. I visit 2-3 times a week, take her for walks, have lunch together.I currently am organizing a shopping trip for mom, sis and me. We make things enjoyable, our time together is important.
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If your Dad isn't an instinctive/natural caregiver, it sounds as if he really will have to bring in some help if he is determined to keep your Mom at home.

In his place, before going the facility route, I would try two things: bringing in some amount of home care help, and getting some help installing some of the helpful technological devices now available to help monitor (and alert caregivers to) wandering behavior. There are also GPS tracking bracelets/watches and -- my favorite -- even SHOES now available that will first alert you if a person wanders outside a specific zone that you specify and then make it possible to track their location, if necessary. A variety of monitoring/alarm sensors and devices can be installed around a house that will alert you if a person moves off a bed or a chair, or even stands on a particular floor mat (e.g., that you place by a front door) -- including at least one alarm that you can record a message in your own familiar voice -- for example, "Honey, stop. Don't go outside. I'll be right there.") and that will sound when the sensor is tripped. And there are other devices, too -- motion sensors, and so on ... that can be incorporated into such a home system. Some would even allow you and your siblings to help monitor (and get alerts about) what was going on in the house from outside (Google GrandCare for more info about their system, and how it can be customized).

Of course, your Dad could install just a regular wireless alarm system with door sensors -- it wouldn't even have to be connected to a monthly monitoring company, I would expect, so no expensive monthly monitoring fees, just a few hundred dollars to set up the magnet connectors on the doors and the controller system to set off an alarm when a door is opened -- and he could set that at night; it would absolutely wake him up if she opened a door in the night (or any other time he "armed" the system while they were at home alone together).

I have not used any of these devices, sensors, or systems myself ... I've just begun researching and reading about them in hopes of finding or building something that will work for my particular concerns with my own Dad ... but I am amazed at some of the technology being developed to try to make it possible for elderly people to stay safely in their own homes for longer periods (even dementia patients). From medication alarms/reminders to monitors that alert caregivers and adult children to changes in heart rate/breathing, or wandering around the house in the night, or excessive time spent in a bathroom, or failure to open the fridge for hours around a normal meal time, or the fact that a door was opened after midnight, and on and on and on. Most of these work via simple motion or pressure sensors rather than more privacy-intrusive devices like cameras, and don't require the monitored person to wear anything or push buttons ... so many elderly parents are more willing to try them. Kind of interesting.

In your Dad's/Mom's specific case, I suggest checking out alzstore.com (wandering), elderdepot.com (mobility: fall prevention: wander alarms), and grandcare.com ... but also simply Googling keywords like "elderly electronic monitoring" + "wandering," "alert," "alarm," "frail," "home care," and so on.

And all of this being said, involving actual home health care aides for some part of the day or night is also important. Making them a part of your Mom's routine will be a change for her at first -- which may not be easy in the beginning -- but will become familiar and expected, and would make things better for both your parents, I suspect. The trick there, to keep the costs manageable and do the most good, is to figure out where that extra help will help the most ... bathing? Night time prep? Few hours in the morning or the evening? If your Dad has regular time when he knows he can "shut off" and not have to concentrate, it may help him to focus more when he needs to.

Eventually -- and possibly not all that long from now -- a facility may indeed be the best option. But truthfully, these can also be overwhelming for dementia patients ... so much sensory input, so little that is familiar for a time, so many other patients (unless you're lucky enough to live near and be able to secure a place in one of the low-resident-population models) ... if both your parents really want to try to make "at home" work for a while longer, a combination of home help and home tech (which could both help your Dad and make it easier for you and your siblings to "see" what was happening at the house) might give you all greater peace of mind.
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