My mom has severe dementia, any advice??

[Kaleigh]

I would love to hear from people that are going through this with their parents. I feel like I''m in a canoe without any oars. I have done my best to advise my dad about getting proper care but so far he is deaf to my suggestions.

They are coming home soon and this unfortunately will fall in my lap. Thanks for any insight you guys might have. Lisa

 

[monarch64]

Oh gosh, Kaleigh. I wish I could give you advice but I''m not at the point in life yet (thank goodness) where my parents have deteriorated mentally. My mom has plenty of girlfriends who have dealt with this type of issue with their own mothers/parents, though, and when I talk to her next (I wish she would become a PS''r, darn it!) I will ask her for some advice.

I''m sending positive thoughts your way, and hoping that you find strength in the difficult times to come.

 

[Kaleigh]

That''s so sweet monarch. If you get a chance ask your mom and see what her friends did. I have an idea of what to do. But my dad isn''t moving one inch. Plus he lets her drive.

And the car has been in the shop many times due to fender benders. I have a hard enough time taking care of Nanny, (her mother), so my energy is running low on this. Sigh.

 

[strmrdr]

dont have much in the way of advise but your in my prayers as is she.

 

[monarch64]

Kaleigh, I emailed my mom and expect to hear a response from her in the a.m. She''s (IMO) really good with advice and I''m sure she''ll have some input on this situation. We, as a family, faced a similar situation two years ago when my dad was going through surgery and cancer treatment and his mom (my grandmother) was there at odds with every decision we made as his immediate family. Sometimes family can be so stubborn and they don''t see things the way we do... my heart goes out to you and everyone else who has to go through these types of things. In the end, you have to follow your gut instinct and do what''s right and best for all involved, I think. Of course that''s much easier said than done. I''m sure your other PS friends wil chime in and offer you much better advice, but for now that''s all I have! Peace be with you!

 

[movie zombie]

no advice other than perhaps to call your own physician and ask the questions. good luck.

movie zombie

 

[Lorelei]

Kaieigh I know how hard it is with ageing parents. See if you can have a word with your Mom's doctor and see if he can provide any input or care here. Your Dad probably feels that he can struggle on to care for her alone and that it is his duty to do so, but dementia is a terrible condition and he will need all the help he can get. See if you can make him realize that help can be arranged to help him care for her, this might be difficult as I know how stubborn parents can be, but all you can do is try. Regarding the driving lets hope he realizes that she should not be driving at all, maybe her doctor can help convince him of this and might have the necessary power to put a stop to it without involving you. If your Dad won't listen to you about accepting help, maybe he will from his or her Doctor. Hopefully he has thought about it and realize that it is more than he can cope with and he might now agree to have some help.

Most of all, take care of YOU! You are a great person with a lot of additional responsibility, it is so hard being a carer and as you say you have Nanny too, but a person with demetia is one of the most difficult to care for. Make full use of any professional help you can get, I know here there is lots of support available, hopefully there is in the States, get as much support behind you as you can. This can always be tailored as Mom requires, maybe initially someone to help her and your Dad around the house a bit, or to sit with her while he has a break or yourself, but if you try to get things in place now, as she needs increasing help then hopefully it will be ready for her and you and your Dad. If you become very involved in the care, make sure you do take time for you - this is so important as we give and give and can neglect our own needs and wellbeing without even realizing it. Remember you can only do so much. My Grandmother had dementia and she wasn't easy and it was frustrating at times, she had to be watched constantly.

Sending out my prayers and positive vibes to you.

 

[Paradise]

Oh, Kaleigh. My heart aches for you and your family. Dementia / Alzheimers is such a devastating disease. How did the doctor''s arrive at the diagnosis? What sorts of things is she doing / not doing to rate the severe dementia label? In other words, how well functioning is she right now?

My MIL and her sister both were stricken with alzheimers. My MIL passed away from the disease in Nov. 2004 after having suffered with if for 10 years. Fortunately or unfortunately, her husband had passed away about 2 years before symptoms became very evident. (At least he did not have to suffer through it.) Her 3 boys were at a loss as to what to do until she she landed herself in the hospital with a psychotic break due to prescription drug overdoses...she could never remember if she took her pills so just kept taking them throughout the day. Once that happened, I think even she realized that it was time to move into an assisted living/alzheimers facility. Thankfully the money was there to pay for it. She stayed in the regular assisted living space for about 2 years and then transitioned to the alzheimer''s floor for her remaining 5 years. We even hired a caregiver (not a nurse) during the last 2 years to come spend 6 hours a day with her to help bathe her, feed her, and just be with her - as this type of care in these facilities can sometimes be lacking and we all had day jobs that we needed to go to. Also - as the disease progresses, these patients need their surroundings to change very little or they get extremely agitated and anxiety ridden. We wanted to take her for rides or bring her to our houses to visit for holidays, etc. It got to a point where we were advised against it as she could not handle it and would always ask to go back. The whole thing was and still is devastating, but the option of moving into a facility was a godsend for us.

Her sister, on the other hand, is a different story. Her husband was still alive and trying to care for her on his own. They came to stay with us on several occassions (they live in FL and we are in MA) and you could just see the stress bubbling at the surface. He loved her and did everything he could to care for her but it is so difficult on the spouse (and all the family members) as the patient continues to deteriorate. We kept trying to get him to look at facilities (I believe the money was there - one of his sons is very wealthy and was willing to pay most of the burden), but he was insistent that he was going to care for her as long as he possibly could. We heard a news report recently about how the immediate caregiver''s health often deteriorates due to the stress and that many times, the spouse will die before the alzheimer''s patient. Well, this happened in this instance. He had a heart attack and died during the night, but it took 2 days before they found him... his wife was wandering around the house but didn''t quite know what was going on or what to do - and she wasn''t answering the phone when her sons were trying to reach them...

Since his death, she is now in a facility and is actually doing much better as far as these things go. She is more verbal and seemingly more relaxed. We all believe it''s because shes not so isolated. There are other people around and things to do rather than being cooped up in your house with someone who''s trying to do their best but not quite making it...

So - sorry for the long windedness - but in my opinion, once your Mom and Dad are back (from a vacation? or where?), hopefully he will quickly see how physically and mentally exhausting it is to care for her - and potentially dangerous as well (driving, leaving the stove on, etc.). If he starts to drop it in your lap, I think you need to take the bull by the horn and be extremely firm with him. If he wants your help then he needs to let you set up things the way you think is best (you had mentioned that you had some ideas on what to do...) - or your help won''t be extended. Period. You simply can''t do it alone and neither can he. End of story. And don''t let the guilt trip he''ll put you on get to you. You need to be strong for him, her, yourself and whatever other family members there are. Hopefully he''ll come around - especially if you don''t give in and walk away a few times. Another thought might be to find a way to bring him to a support group to hear other people''s stories and how they are dealing with it. Not sure how receptive he''d be to that - but it could help open his eyes...

Not sure if this post helps or hurts or both... My prayers to you.

 

[Mokey]

I don''t have any advice, but you have my prayers and support. Bless your heart, when it rains it pours! Like others have said, don''t forget to take care of YOU, your family needs you too. Again, my prayers are with you. Mokey

 

[diamondlil]

I''m so sorry to hear this, Lisa. I wish I had an answer for you. I hope you can talk opely with your father about the options.

My grandmother (dad''s mom) suffered with dementia for the last 10 years of her life. Thankfully, my parents were able to find an assisted living facility to care for her, because there was no way my mother would have been able to do it 24/7. In my grandmother''s case, she was always happy, polite, and would sit an chat for hours (although she repeated the same stories over and over). She had a couple of quirks that we had to laugh about like her collecting napkins and plastic bags.

The hard part was when she forgot who we were and lost all those precious memories. I never quite learned how the deal with that. My kids (her great-grandchildren) had a very difficult time visiting in the last couple of years so we chose not to put them through it very often.

Having been through that with my grandmother, my husband and I have often talked about what we want for ourselves in the future. I hope that you can speak with your dad and have him understand that getting help will be the best for both of them.

 

[tanuki]

I don''t know where you live or how much money your parents have saved up, but I do have some advice.

My mom is 80 and it has become increasingly clear that her memory and ability to organize her activities of daily living are on a steady course downhill.
There is nothing we can do about it.

So my dad made the decision for them to sell their house and move to this Retirement Community in the Atlanta area.

It is the best thing they could have ever done.

The concept is to try to keep couples together. So the retirement community is sort of attached to an Alzheimer''s center and a Nursing home.

They have a dining hall where they eat (my mom can''t organize cooking anymore and they had a couple of small house fires when she left something on the stove - early warning signs that we were going to have to do something) - so you don''t have to worry about that.

And they have these buses that come and make the rounds of the local doctors offices and a lot of organized activities.

The only catch is that they require you to pass a physical before you get in. By some miracle my mom passed hers enough to be accepted. She can hold a credible conversation - it''s just that she gets lost driving around and takes forever to do anything.

Parksprings

I''m sure this isn''t the only place like this in the country.

It may do you some good to check around and see what your area has to offer.

 

[Madam Bijoux]

This is one of the most difficult situations a family could face. Keeping a family member who has dementia at home will exhaust the caregivers and could be very dangerous. I believe the safest thing to do would be to get your mother into a place like Fair Acres, where she would be watched over by a competent and concerned staff. There is a waiting list to get in, but it''s one of the best-run places in the state. Everyone on the staff is either an RN or studying to be an RN, and the doctors at Riddle Hospital care for the Fair Acres residents. (My father had dementia that got to a point where he was a threat to himself and to everyone around him. The kindest thing we did for him and for the rest of the family was to get him into Fair Acres.)

 

[widget]

Oh, Lisa....

I''m so so sorry to hear this.

Are you the only person in your family who has to deal with this? My only thought might be to try to gather a "team" of people who your Dad likes and respects (friends, family members, physician, minister, etc) who can unite to try to convince him that some kind of residential care is the best course to take.

Maybe there would be more power with numbers...

I found it heartening reading in some of the posts above that sometimes the patient is happier, or at least more comfortable in better controlled/managed living situations...maybe it would help to tell your dad of such stories..

However this evolves, you simply MUST take care of yourself...even if doing so might feel "selfish" or unkind occasionally.

My heart goes out to you..

Janis

 

[decodelighted]

Date: 3/14/2006 11:43:01 PM
Author: kaleigh
I have a hard enough time taking care of Nanny, (her mother), so my energy is running low on this. Sigh.

Oh Boy! This is just TOO MUCH! I know your Dad''s kinda droppin'' the ball on this a bit, but really - the ball is in his court. You are doing WAY more than "your part" already. There''s only so much a single person can cope w/, be responsible for.

I agree w/the advice to get info/resources/etc -- but then I''d urge you to PASS IT ON to yr. dad.

Hang in!

 

[Sundial]

Oh Lisa I really feel for you and your situation! My Dad suffered from Alzheimer''s and my Mom was reluctant to get any help in caring for him. She continued to let him drive until the police found him with the car, lost and unsure of where he was going. It just took time and his symptons getting worse before we could convince her to sell their house and move near my sister. Then he kept wandering off and the neighbors would find him and bring him home. Finally my sister talked her into trying an Alzheimer''s care facility for a short term visit. She could see that he was well cared for there and doing better than at home so she reluctantly agreed to let him stay. It is so hard and there is a lot of denial and guilt involved. No easy answers, but hopefully you can get your Dad to take away the car keys and get some professional help.

 

[Kaleigh]

Good advice everyone!!! Hey Deco my aunt ( Dad''s sister ) told me to stay clear of this. I have stayed clear of this for years. But now she could hurt someone else say while driving!!! That is why I won''t stay clear. She was diagnosed by physicians and psychiatrists in Philadelphia. Dad thinks he can cope with it but isn''t taking proper care of her. Also she falls constantly and he just bandages her up. I have no words for this. But when I do talk to him I am putting my foot down. If he doesn''t listen then I walk.

 

[Madam Bijoux]

You're absolutely right, Kaleigh. You have to play hardball with your father - don't let him dump this on you. Perhaps a gentle reminder that he is your mother's next of kin and will be held legally responsible for her will suffice. If your father still won't listen and continues to let her drive and she keeps falling and hurting herself, would you consider having her declared legally incompetent and filing to be her legal guardian? If you become her legal guardian, you could put her into a nursing home.

 

[jokerselsa]

Kaleigh, I am so sorry to hear your situation,
I know first hand how devastating the disease can be. My in-laws both have alzheimers and dementia.
My husband and i have been caring for them for the past 6-7 years. We moved back to Ohio from Fla. to care for them.
They were falling and calling 911 all the time. and when we would try to help, we would often get kicked out of their house. It got to the point of making a very tough decision,calling Adult Protective Services,who placed 24 hour care in the home. But they kicked thr caregivers ou also. So we were faced with another difficult decision,becoming legal guardian. Which we had to do to enforce the care in the home. Well after 3 homehealth aide services, my husband and I decided to care for them 8:30am-5:30pm M-F and have aides nights and weekends.They were admitted in the hospice program 2 months ago. It is a very tough job, but I commed my husband for wanting to take care of his parents. He has had to watch his mother forget to talk(lost her words) forget to walk, and just this past x-mas can no longer sit in a chair. We have been feeding her baby food for 3 months and now she chokes on liquids so we have to hydrate her with jello. His father has broken both hips over the years, Is often aggitated, thinks he''s not home,Has to go to work, has to get a car etc. I hope your father can understand how serious this disease is, and I know he is probably concerned with upsetting your mother. My father in-law covered memory loss for MIL several years before her disease became noticable,Then he started losing his.
but he needs to realize that she could hurt herself or someone else(driving), and that doing whats best for someone isnt always going to make them happy. I know there are support groups on aging, I will see if i can find anything for you. and will aso ask our hospice social worker for advice for you. Just make sure you take care of YOU first, you cant take care of anyone unless your healthy.

 

[monarch64]

Kaleigh, first thanks for bringing up this topic--it opened up a conversation between my own mother and me on how we can approach this with my dad who''s been ill for several years but always wants to drive himself everywhere, and she also knows she and I might have to deal with it someday if the situation gets to be like yours. Hopefully others will have this conversation with their own parents as well.

My mom replied to my email this a.m. She thought your dad should take more responsibility with driving your mom places or looking into services that help with this kind of issue. She also mentioned that maybe it would help if your mom could gradually be "weaned" from driving by enlisting the help of others. I agree with posts above that made mention of not letting all this weight fall on your own shoulders! Take care!

 

[gingerBcookie]

::BIG HUGS:: I see first hand all the time the stress on caretakers of demented patients. In fact, we''re taught and in our books, it''s listed (top of the list actually) as part of the care of dementia -- counsel and support for the caretaker and family. I''m so sorry you''re going through this. I can''t give you firsthand advice, but one of the things listed that helps dementia patients is environmental clues and having a very rigidly structured life. Definitely talk to a doctor as there are medications that can slow the cognitive decline.

 

[DonaBella]

Kaleigh...i am so sorry. Unfortunately, my mother has the kind of dementia that could lead to Alzheimer''s and I have known about this for a little over a year.

I wish I had some solid advice for you, but I really don''t. My mom and I chat about once a month. She lives in another state so the day to day stuff is not something that I have to be forced to deal with, but she is always on my mind. Time is stealing her away from all of us and she is no longer the mother I used to know. She has good days and really stormy, bad days. It is hit and miss, so I hate to admit it, but I hesitate to call her for fear that she will tear into me on one of her bad days.

My father has not spoken to me since last June due to a misunderstanding regarding an incident involving my mom at my house here in CA. The funny thing, my mom and I have gotten through it and its over with for us...but he has resigned himself to living with her in her current state, resenting me for who knows what reason. He is horribly depressed and stays busy with little part time jobs that he can escape to to forget his situation for a bit. My youngest brother lives nearby them so he lets me know how our mom is and our dad.

Prayer is so immensely valuable to me, more so now than ever before. I also started going to a therapist, which has seriously been a saving grace for me. Maybe talking with someone would help. There is also support groups for those who have family with dementia and Alzheimers.

My mom refuses most of the meds suggested, and takes a minimal amount at my dad''s supervision, but its only a matter of time for her. I hope and pray that you will know that I personally will keep you in my thoughts...

 

[Kaleigh]

Thanks Monarch and Ginger,
Very good advice. My father is very selfish and doesn''t want to drive her around. I keep telling him that he''s going to have to. She lost her license once already. Somehow she got it back in FLA. If he was more reasonable about all of this it wouldn''t be sooo hard. But he won''t listen to anyone. She is on some medication to help slow down the process of her cognitave degeneration. But right now is declining very quickly. Thanks to everyone for taking the time to help me out. I really appreciate it. Lisa

 

[crafftygrrl]

Oh Lisa,

My heart goes out to you and your family! My Mom was bi-polar as well as had Alzheimers. At first, my Dad would cover things up, so my brothers and I did not have a clue until things brewed into a crisis. We all live far away, so it was difficult to monitor their situation closely. Since I''ve been in your shoes, here''s my advice:

1. Take care of yourself. Try to get sleep and eat well, limit the junk food. Exercise is a great stress reliver. Go on walks/runs outside now that its Spring.

2. Take care of the responsibilities you have now--your family and Nanny.

3. Try to get consensus among your siblings and other people who care.

4. Talk calmly and reason with your Dad. If your Mom needs to go into assisted living, start researching now. It''s weird, but sometimes you have to parent your parent.

5. Enlist the services of an eldercare social worker/specialist. These professionals know the system and how to deal with all the paperwork for Medicare/Medicaid. It''s their business to assess the situation and work to make it better. Their services are worth every penny. They can arrange for cooking, cleaning, rides and other services that can help your Dad''s and Mom''s daily quality of life.

6. Have a medical professional assess all the drugs she is taking. Perhaps her situation is being caused or worsened by a bad interaction. There are also new medications that can slow the Alzheimers and help with dementia.

I feel for you. My prayers go out to you and your family. If I think of something else, I''ll post.

Claudia

 

[sevens one]

So sorry you have to deal with this Lisa.
I think you already have enough on your plate.

 

[Odilia]

I too will keep you in my prayers. I wish I had advice, although I''ll be checking this thread to see if anyone else does. My husband''s aunt, who lives about an hour from us, is also starting to get dementia, and unfortunately she lives alone. So we are having to look into this as well. I had to take care of her in Nov./Dec. last year, and it sure was stressful.

 

[monarch64]

Kaleigh, I''m sure you''re doing plenty of research on this issue yourself, but I did find this link and thought it might be helpful:
http://www.elderrage.com/

 

[Kaleigh]

Date: 3/15/2006 6:25:06 PM
Author: monarch64
Kaleigh, I''m sure you''re doing plenty of research on this issue yourself, but I did find this link and thought it might be helpful:
http://www.elderrage.com/

Thank you soooo much. I am sending my dad the link now. That is awesome!!!

Very helpful. Oh I feel better already.

 

[pebbles]

Lisa, would your dad allow an adult caregiver to come into their home to help out during the day? If he is definitely against moving to an assisted living center, bringing in a non-family member that doesn''t have such as emotional tie to her may help.

 

[icekid]

Lisa-

I know I''ve mentioned to you before about Scott''s grandmother- her dementia is pf course, continuing to get worse. However, she and her husband are over 90! So it''s so tough for him to continue to take care of her. And they still live alone. Scott''s grandfather only recently finally has accepted the help of an aid, who comes to their house 2 or 3 times/ day and deals with medications and meals. She also goes to an "adult day care" type of thing a few times/ week where they do arts and crafts etc to give her husband a rest from taking care of her.

I hope you can get through to your father and get your mother whatever help she needs to function.

 

[Kaleigh]

Yes Icekid, I do remember all about Scott''s grandmother. Adult day care could be an option too. Thanks for the thought.