Caregiver warning signs of suicide

[LisaK]

My father has had ALS for over 12 years now and my mother is primary caregiver. He is doing as well as can be expected. They have people come in to help and we all do as much as we can to assist; however, I have noticed that my mother is very depressed and has made enough mentions of wanting to 'go away and never come back' that I am very concerned. She may have a bad day and is crying hysterically and making these types of 'threats', but then she calms down and says she just needed to vent. Then, the following days/weeks, she seems fine. I have dismissed it somewhat in the past as her needing to vent as she has said; however our 18 year old nephew committed suicide last week. The family is devastated and at a complete loss because no one saw it coming. This has now alerted me in a big way to the fact that my mother may be sending up the red flags that she is in over her head and can no longer manage. At the funeral for my nephew, my mother made specific mention to how she too has considered this in the past (she told this to my best friend, who immediately told me). I just don't know what to do. I want to address this with her, but I am not sure what the reaction will be. It is also very frustrating that she has refused any kind of help. Clearly she is suffering from depression; however she refuses to take any type of antidepressant. I have also tried to get her to join a support group or at least talk to another caregiver who is dealing with the same things as her.

I try to be there pretty much every day to break up any tension and relieve her from some duties. When I ask what else I can do, she just says no on can help. I know she feels very alone and I am at a loss. She now has daily help. Someone comes in the morning to get my father out of bed, bathed, bathroom, and feeds him breakfast and lunch. I try to come every day to feed him dinner. But this illness is just so horrendous. He needs someone to do everything. He can still swallow and breaths fine with no machines; however he can no longer lift his arms or move his legs so he is completely wheelchair bound and his speech is pretty much gone as well. He communicates well; however he needs someone to do everything for him. I understand what she is going through at least as much as an outsider can understand. (That really infuriates her when people make that comment) and I know it is so difficult living with this disease and caring for someone, but I don't know what to do. My father has always said he just wants to remain in his house so putting him in a home is out of the question. If anyone has any experience with this or input, it would be so greatly appreciated. Lisa

 

[Zaphoon]

Lisa,

I'm very sorry your dad has ALS. It takes its toll not only on the person that has it but those who give the care. After 12 years, I understand you mother's exhaustion. I am sure there are those on this forum that will stop by this thread soon and share any suggestions they may have.

I would say you need to talk to your mother about her past comments. Think how you'd feel if you didn't and she were to attempt something. I would also suggest she seek help from the local ALSA and MDA chapters. They have social workers that are trained to help see people through tough times like this.

 

[Twinsmom]

Dear Lisa,

I'm so sorry for your entire family. Your family's journey with your dad's ALS has been a long one! As Zaphoon said, I'm sure no one wonders at your mother's exhaustion. I think his suggestion is excellent. Since she's refused help and antidepressants, the best bet at this point would be the social worker making home visits and creating a relationship with your mom so she, over time will be able to work through some of the obvious emotional stress she is going through.

Your support is invaluable! I hope you are also seeking emotional support...you have the strain of worry and love for both your father and mother- which is an immense challenge.

Peace,
Melody

 

[sharona]

Hi Lisa,
Please confront your Mom about this it is very serious, my brother commited suicide & no one had a clue that he would do this, he was a police chief with alot of pressures if I had known he even was thinking this I would have done everything in my power to help him,so please talk to your Mom & i'm so sorry about your Dad my husband Larry has been sick for 3yrs & the neuro can't give us a diagnosed yet & it is very frustrating.God Bless.
Sharon

 

[Marjorie R. Wilcox]

So sorry, Lisa to know how things are going. I have heard that if a person talks about it, they aren't likely to take their own life. I would think that the help you now have set up will relieve her some stress, but since it is no fun to watch someone you love decline, I would watch her and give HER a lot of attention. Does she like to read or go to a movie, for instance? Encourage her to get her mind off things by relaxing in at least an occasional "time out" for herself. Maybe having her hair done, or a pedicure, or just a lunch at the mall.

Remind her that this won't be for always. It will be over one day and just a bad memory. Help her to make good memories knowing she is such a comfort to the PALS. Have them talk about better times past, and promise her, that when this is over, there is more life for her to live... that she is needed and cherished. I know what would boost my days, and that is most of what would.

 

[irismarie]

But I think we should also remember that if someone gets so far as to commit suicide - and really means it, that is the important bit - it means that death is easier for them than life.
Should we deny it to them?

 

[indigosd]

Lisa, please know that I am so sorry for your family-the ALS, the death of your Nephew and for this heart concern for your Momma. It is such a heart breaking and soul changing journey. It is a FAMILY Disease! Is it possible to give your Momma a real break like a 2 week vacation from this reality-time just for her AWAY, doing something interesting and fun? What I hear is that her glass is empty and she needs to be allowed to fill it up again! Being a CALS is exhausting and most of us put all of our needs on the back burner. Why? It might be that there is no time, or no money, or just toooo exhausted, or that it may be seen as selfish or uncaring.. A short break is helpful short term. She has been doing this for twelve years and simply needs time away. Not everyone in a crisis needs to be on antidepressants. I agree with Marjorie that ususally those that talk about it are the ones that do NOT do it. How old is your Mom? Does she have a computer and is she comfortable using one? Offer her the support of this forum! Social workers are nice but it isn't the same as the very real support that she would get from us here. We completely understand her journey. We are all on the same roller coaster ride from H*@ll! People can offer heart felt sympathy but your Mom is right, no one can truly understand it Or "help" until they have actually lived it. I too have wished at times that I could just get away-get in my car and drive and leave no forwarding address. :] I don't feel suicidal-just overwhelmed and exhausted at that moment. Can you tell her how very much you appreciate and admire her tender loving care of your Dad and her courage? Send her a bouquet of flowers if she enjoys them or a box of chocolates from your Dad! I think she also needs to be acknowledged and appreciated. :] I hope that she will find her way here and give herself the gift of support that will lift her up! Thank YOU for being such a loving and caring daughter.
Marjorie, right there with you and I have your back! Sending you virtual Godiva Chocolate and a smooth Red wine to go with it!
Sharon, so sorry about your brother and no definate diagnosed. It is easier to have the label isn't it.
Kim and Melody, such good advice as usual. :]
irismarie, that is surely a thought provoking question...I guess that I believe that it is a permanent LONG TERM [forever] solution that is extremely heart painful for those that loved that person. I won't even touch the organized religious ramifications. The truth is that we are all one heartbeat, one breath away from death. We are all going to pass from this existence and the mystery is when? ANd sweet irismarie, we have soul much to live for-flowers to plant, people to hug, books to write, music to sing! :]

hugs, Kay Marie

 

[LisaK]

Thank you all for the responses. I feel like I have tried everything for her at this point. I do know that she is in desperate need of getting a respite. She constantly says this. In fact, when I bring up the local ALS chapter, she gets angry. She says, if they really wanted to help, they would make arrangements for caregivers to have a respite. She has never even tried a support group. I have used them for myself in the past for various things and thought they were invaluable. Everyone is different, but judging from my own experience, I think a support group would do wonders for her. She feels like no on understands what she is going through and to a certain extend she is right. I know for myself I struggled with infertility for years before we had our children and while I knew I had lots of people around who loved me and wanted to help me through it, I never could open up because I didn't feel like they really understood. I imagine she is feeling that same thing. I have explained this to her, but she still refuses to try the support group.

I live less than a mile from her and my husband, myself and my children are there pretty much daily, but we don't have to do everything she does. We arranged for her to have a respite last year when the stress finally became overwhelming for her. She didn't go far or stay long though, because she was too uncomfortable leaving my father. Still, the couple of days away did her a world of good. But then she was back to the grind and it wasn't long before she was back in the same place. Since then, we have someone come in from 8 til noon M-F which is a huge help. Respite would be doable because financially it is not an issue and we do have people that can come to do the personal things like bathing and bathroom and myself and my brother can help with the rest, but it seems like he gets very offended about this and makes it difficult for her. I think she feels trapped for this reason. She knows if she goes, she will have to deal with his attitude on return so why bother. I have tried to talk to him. He doesn't seem to 'get' how difficult her job is, probably because he feels like she has the lesser of the two evils compared to what he is going through. Truth be told, I don't know who it is worse for.

The other issue is that they (my parents) are not getting along well at all anymore. He is finally completely dependent on others and I can't even begin to imagine his frustration so naturally he has moody days and all frustrations are vented on my mother. On the other side of that, she is who he depends on so she can't even walk through the room without him asking for something. While it sounds to some people like she is out of line, I understand her frustration. She feels like she has no life. I guess to an outsider, it might sound like she is being selfish, but she has been doing this a very long time and it's exhausting to be at someones beck and call. At the same time, I see my father and can't imagine how it would be to not even be able to scratch and itch without asking for help.

I feel like I am just rambling at this point, but there are alot of issues and a long history with this illness. We have been through so much and at this point, I am at a loss as to what I can possibly do for her. I plan on talking with her about the suicide comments. I am VERY concerned at this point, especially after what we went through with my nephew last week. We are leaving to go on vacation with them tomorrow so once i have some quiet time, I will discuss it. THe only thing I can think of at this point is that she really would like for him to be put in a home because it is just too hard for her at this stage; however she would never do it because she would feel to guilty. Meanwhile being caregiver is slowly killing her. I also think she worries about what we (my brother and I )would think of her if she did this. My father has made it clear that his wishes are to stay in his home so I am going to offer to find 24 hour in home care and allow her the option to get out of the situation. I don't think she will do it, but I want her to understand that I am OK with whatever decision she has to make to keep herself well. I think she is waiting for my brother and I to step up to the plate and say, 'listen, we know this is too much for you so we are taking action'. I have had all of these conversations with her before, but I think we need to take things to the next level. Just not sure what that is at this point. I wish I could put her in contact with some of the caregivers on this site b/c I know it would help her.

She wants no part of the computer, we have tried that as well. In fact, between my brother and I, we have tried everything mentioned above. I guess I was just hoping for an easy answer, something we were missing. But reality is that the situation is unbelieveably difficult and there are no easy answers. Support is an great help though. I come here randomly when I need it and always feel better after having done so. God bless you all. I know what you are going through (from the daughter's perspective at least).

 

[indigosd]

Lisa, are you going on a vacation with the 2 of them? From the sounds of it, I think that you need to have a heart to heart with your DAD with your Mom present. He needs to understand that everyone has needs and that she is truly exhausted. Would he agree to a short term placement so that she can have some time to meet her own needs? 12 years is a very loooong time. My husband has attempted to do similar things with me and uses the excuse that HE IS DYING. Nipped that in the bud very quickly! Guess what, we all are and that is not a valid excuse to be self centered in my book. Yes, it is horrible to be the PALS and just as horrible to be the CALS. It sounds like you just need to give your Mom permission to be overwhelmed and exhausted and angry and then support her and remind her that she is soul loved and appreciated. :] Has your Dad always been the one in charge or control in the relationship? If so, I am certain that she is truly struggling. Remind her that GUILT is oftentimes SELF IMPOSED :] I subscribe to a web site called Daily OM and most of the time, it is so on the mark. This was my Daily OM horoscope for today and it made me just LOL!

January 11, 2010
Finding Time for You
Your Most Vital Commitment
Within each of there is a well of energy that must be regularly replenished. When we act as if this well is bottomless, scheduling a long list of activities that fit like puzzle pieces into every minute of every day, it becomes depleted and we feel exhausted, disconnected, and weak. Refilling this well is a matter of finding time to focus on, nurture, and care for ourselves, or "you time." Most of us are, at different times throughout the day, a spouse, a friend, a relative, an employee, a parent, or a volunteer, which means that down time, however relaxing in nature, is not necessarily "you time." Though some people will inevitably look upon "you time" as being selfish, it is actually the polar opposite of selfishness. We can only excel where our outer world affairs are concerned when our own spiritual, physical, and intellectual needs are fulfilled.

Recognizing the importance of "you time" is far easier than finding a place for it in an active, multifaceted lifestyle, however. Even if you find a spot for it in your agenda, you may be dismayed to discover that your thoughts continuously stray into worldly territory. To make the most of "you time," give yourself enough time on either side of the block of time you plan to spend on yourself to ensure that you do not feel rushed. Consider how you would like to pass the time, forgetting for the moment your obligations and embracing the notion of renewal. You may discover that you are energized by creative pursuits, guided meditation, relaxing activities during which your mind can wander, or modes of expression such as writing.

Even if you have achieved a functioning work-life balance, you may still be neglecting the most important part of that equation: you. "You time" prepares you for the next round of daily life, whether you are poised to immerse yourself in a professional project or chores around the home. It also affords you a unique opportunity to learn about yourself, your needs, and your tolerances in a concrete way. As unimportant as "you time" can sometimes seem, it truly is crucial to your wellbeing because it ensures that you are never left without the energy to give of yourself.

I love how the Universe is constantly taking care of me and sending me reminders!

Can you print this off and give it your Mom and tell her that there are PALS that really do understand the journey and will support her in meaningful ways that will truly help her? Have a talk with your Dad! Enjoy your vacation :] How fortunate that they have you, your family and your brother to love, support and understand them on this journey. I am giving you a platinum star to put in your crown! More hugs!

 

[imanzcan]

Hi Lisa. I read your entire thread yesterday, last night and into the wee hours of the morning inbetween chores. I wanted to reply last night, but at times I find myself at a loss for words or opinions, but I feel like I must pitch in my two cents worth withou offending anyone, so here goes: Firstly, I am terribly sorry to hear about your dad and Als for 12 years. 12 years is a very long time, may God bless him and your mom. How old are your parents? If you were to disclose their ages and tell us what your dad used to do before als, and whether your mom worked or was an at-home-mom....it would help a bit. I am my husband's caregiver myself, but he is not a Pals. I have been doing it for a year. I just lost a young son to als two and a half years ago, so you see...that's back to back. I have been through hell with no use of anti depressants....I tend to work with my mind, I put positiveness ahead of me. My life is on hold right now, it has been for the past year. It was hard for me to start this caregiving thing all over again. Yes, it drives you crazy. I have had tantrums of crying and asking 'why us?' There are times when I wish I had my life the way I had it before. I used to be very about town, but not anymore. The situation I am in is very, very overwhelming. I do everything for my husband, plus I am the 'man' around the house. The only, and yes "ONLY" help I get is a lady that comes in twice a week , Tues and Thurs to bathe him and such, but I do everything else. I have been at it for 1 yr, but can you imagine doing it for 12 years? Your poor mom...she is burnt out! It's a wonder she has kept her sanity being at it this long. What kind of a person is your dad? Is he a compassionate and easy to get along with type of a person, or is he otherwise? Sorry for the questions, but there are things we need to know too! Being a caregiver is a HARD task, it takes everything away from you. But what can you do? Please keep us posted about your situation. As far as the suicidal thoughts go, I don't know about that. I wish I could help you. If your mom wanted to do something stupid she would have done it a long time ago. I agree with the earlier poster she needs some time out. She needs to be taken out to eat, go to a movie, or any little thing. Like me, the only places I go to is the dang grocery store and pay bills, and that's it! If your dad is bedridden and has had als for 12 yrs how are you guys going to take them both on vacation? I am keeping you guys in my prayers...this is getting too lengthy. May God bless each one of you.

Irma

 

[LisaK]

First of all to Irma, I am so very sorry to hear of the loss of your son. I cannot even imagine watching your child go through this devastating illness. We lost my 12 year old neice to a rare illness 2 years ago and my 18 year old nephew (her brother) just last Saturday. This is on my husband's side of the family. My husband has only one sister and she lost both of her children in 2 years. We are dealing with that on one side of the family and this on the other. It is very hard to try to keep everyone going but I am trying.

Here is some background. Regarding my parents. My father was a truck driver, he was diagnosed the year after I was married when he was just 54 (he is now 67). He was retiring that year and had just paid off the house and were looking forward to so many things...so happy retirement, right? We have been very fortunate with him. It started with slurred speech. His speech was the first thing to go. We can still talk to him, but it is very hard for us to understand him. About two years after diagnosis, he graduated to a cane, then about a year later started with a walker, then another year or so later to a wheelchair on ocassion and now full time wheelchair. The process was very slow though. He has been in the wheelchair for about 6-7 years now. Even with that, he was able to feed himself until about 3 years ago. He still can stand if we pick him up and place his two fingers on a handrail, but he can't move very well at all.

He was always the one making decisions. My mother was the homemaker and did that very well. She now has to handle all of the affairs and basically be his voice which is difficult b/c he gets very frustrated with her if she doesn't do things the way he would do them. By nature she is a timid person, he is very aggressive. It is very hard to try to make yourself be something you are not, especially if you are on the timid side.

Throughout my childhood, I can rarely remember them fighting or even raising their voices at each other. Now, there is constant bickering and yelling going on and my mother doesn't handle it well. For the most part, my father has an excellent attitude. He is laughing every day and is never really depressed, but he definitely has days where he is moody and takes it out on her in a big way. I have had talks with him, with her....with him and her together. Basically he listens and won't acknowledge any of it. Very stubborn. I know he looks at her and thinks she's got the easy part of this. Now that she has help coming in, she feels that even more. She needs the help. She's not as young as she used to be. She is 65 and he is 67 and he is dead weight even at 170 lbs, it's very hard to move him. My husband even has trouble. She has to get him in and out of bed, etc. She does it every day. Her back is always hurting. Meanwhile, her house is spotless, she cooks fresh pies nearly daily and he eats like a king with home cooked meals daily. He looks unbelievable too. If he weren't in the chair, you wouldn't think there was a thing wrong with him. This is all due to the wonderful care she takes of him and everything she touches. She is a perfectionist which is to her detriment b/c she is constantly striving to do more, more, more. She has him spoiled. You can't believe the things she does for him. Now she has herself to the point where she is burned out. I don't like to talk bad about my father because he is a wonderful person as well. The disease has taken in it's toll on all of us in various ways. But he is very hard to handle sometimes.

Regarding our vacation. My husband and I just got a vacation home in FL this fall and we set the first floor master bedroom up for my father with handicap accessories and a lift chair. He is not on oxygen or anything, just wheelchair bound so with some help, we can get him on the plane and in and out of the car. They have a handicap van which they left in FL over thanksgiving so once he is his auto wheelchair he can go places without being transferred in and out of a chair. We live in PA so he is trapped indoors in one room all winter. Part of the reason we got the house was so that he would be able to get away from her during winter months. He gets very stiff in cold weather. The only problem is that when they are in FL, they don't have the daily help so my mother has to do everything. My father would not want me to help with bathroom and bathing duties (truthfully, I would do it if it were necessary, but I am thankful that I have not had to get involved to that extent) so it's all on her. I feed him and take him places to give her some time, but we can't go for very long (b/c of bathroom situation). So anyways, it's nice for him to get away, but not as nice for her being out of her element and without the daily help. Can't really win here.

Regarding me...I am 37 and married for 12 years (together for 19) and have 3 small children. 5 year old twin girls and a 4 year old boy. I can only give so much b/c I have my own duties but I do live right up the road which has proved essential b/c there have been numerous falls and such over the years.

By the way, any input is useful. I am not easily offended. If there is something that I can be doing and am just missing it. By all means, please say so. I am looking for help and ways to make changes to better all of our lives. I appreciate all of the feedback so much. I know you are all dealing with your own issues. Life can be very hard, but there is so much joy to be found as well. After just losing my nephew, i want to be proactive. I will have to live the rest of my life with regrets for not seeing the signs that apparently were written on the wall with him. I feel like my mother is screaming for help and I just don't know what to do for her. I am really feeling helpless and frustrated.

 

[indigosd]

Exactly what I felt was going on. You are a jewel and also your husband. Hard as it is-Dad is going to have to understand and accept that his wife and all of you need and deserve to have a life also. You are going to have to take the hard stand I think. Your Momma needs you maybe more than your Dad right now. I can so appreciate and understand you not wanting to do that part of personal care for your Dad. Have they tried to use a condom catheter for the urine? That may help give your Mom a break and you would not need to actually look or touch him. Oh, your plate is truly full. Keep talking and asking. We are here for you and for them. It is ok to feel helpless and frustrated. Hugs to you.

 

[imanzcan]

Lisa, thanks for all the info. I agree with indigo, you are a jewel. Your dad must have the slow progression type. According to your post, he can still swallow, he is still eating regular food, isn't he? My son had the aggressive type. His was fast. My son departed 15 mos after diagnosed. He got to the point to where he could not swallow, he had to have a peg inserted. That was quite an experience, but it had to be done. Has your dad lost weight? My son lost a lot of weight, way, way too much. It was very painful to watch him waste away. Right now I just want to remember my son the way he was before als, that is why I am making it short. It is too painful for me to put it in writing. May he rest in peace....he is in a much better place.

I am keeping you guys in my prayers, hoping that things will get better and easier for your dear mom. You bet they are not young anymore. I am in that age group myself.

Once again, thanks for all the info. Your dear mom is giving it her all, may God bless her. This disease is sooo bad. It tears up the whole family. I only wish I knew what causes this damn disease. May God bless each one of you. Prayers to your mom and dad.

Irma

 

[LisaK]

Yes, he is still able to swallow. In fact, just recently they sent him to a speech therapist (kind of a joke, but worth a try) and they were very surprised to find that he still has 80% of his swallowing ability. He has not lost weight. He eats delicious food all day long and I don't think he realizes how lucky he is. His only issue is with tough meat. We have to make sure meat is very tender or he has a hard time with it. I know we have been lucky as far as the progression goes. He was still very active, even driving as long as 5 years into this. He worked out as long as he was able and they just recently (a few weeks ago) had a stair lift put in and even though he can barely move a limb, he still insists on trying to get down the stairs (with lots of help, of course) without it. We will never truly know the reason for the disease; however it was determined that exposure to Agent Orange in Vietnam set off much higher rates of ALS than those in the general public so the VA has been able to assist in many aspects recently. My father says that is his only regret is enlisting in the war. He was not drafted, he enlisted and feels exposure to the pesticides is likely the cause of this.

Irma, bless your heart. I am so sorry to dredge up those terrible memories of your son's illness. Thank you for taking the time to chat with me, it means so much. I am so sorry that we all have to go through these things, but so thankful for wonderful people like yourselves who are so eager to help others.

What is a condom catheter? Just by hearing the word catheter, I am going to go out on a limb and say he will decline, but maybe it is something less invasive than the name implies. I can see his perspective. He has so little left of himself that he does not want to progress into something unless it is necessary. Unfortunately, that puts the brunt of labor on my mother.

 

[imanzcan]

I really do not know what a condom catheter is, but I can more or less imagine. I am thinking it is probably something that you can put over the male genitalia instead of inserting the tube into the male part. I do not know.....I am only guessing! lol We could look it up on the web...as a matter of act I will do it now. I have heard that the condom ones are more comfortable than the others. I am sure some of these forum members will step up and explain it to you.

Okay Lisa, take care of your parents and yourself. Don't be a stranger. We are here all the time to help or cheer you up. Oh...about mom and a computer...I honestly believe that if she gets her a computer and get to using it she'd enjoy it very much! You would be surprised how much stress this "gossip machine" takes off me. It is trmemnous help. You guys need to get her started. You are never too old! Shoot, I am enjoying mine, I am on facebook looking up and finding old friends. It is great entertainment. I'll take my computer over my phone or tv any old day! lol God bless you

Irma